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Diffuse Large B-Cell (DLBCL) Non-Hodgkin Lymphoma Relapsed and Refractory

Lymphoma Diagnosis Stories | The Patient Story

Diffuse Large B-Cell Lymphoma (DLBCL) Stories

Richard’s Story: New Targeted Therapy for Relapsed/Refractory DLBCL

Richard shares his stage 4 diffuse large b-cell lymphoma (DLBCL) story, and having to undergo treatment two different times after his cancer relapsed five years later.

After finding a new medical team, Richard decided to participate in a clinical trial testing venetoclax and selinexor to treat DLBCL.

Explore his story below to hear all about his experience with chemotherapy vs. the clinical trial, dealing with side effects, and the support he needed to get through it all. Thank you for sharing your story, Richard!

  • Name: Richard P.
  • 1st Diagnosis (DX)
    • Non-Hodgkin Lymphoma
  • Age at DX: 62 years old
  • 1st Line Treatment
    • R-CHOP chemotherapy
    • 6 cycles
  • 2nd DX
    • 5 years later
    • Relapsed/refractory non-Hodgkin lymphoma
    • Diffuse large b-cell lymphoma (DLBCL)
  • 1st Symptoms of Relapse
    • Excessive swelling in leg
  • 2nd Line Treatment
    • Clinical trial: venetoclax & selinexor

Richard’s Story on Video

Table Of Contents

Thanks to Karyopharm for its educational funding support of our program. The Patient Story retains full editorial control over all of published content.


1st Diagnosis & Treatment

Tell us about yourself 

It’s great to be part of this. I love to tell people what’s happening and how things are going with my clinical study, and just life in general, and just get another friend out there.

I moved here from Chicago 42 years ago, and so I think I’m going to stay. I’m married. We have two children. They’re adults now. Elizabeth, she’s my business partner, and we have a tamale company.

Richie, my son, is into real estate. In fact, last year, he was cited the best property landlord for the homeless. He helps people transitioning back into society from wherever. Him and his friends buy apartment buildings and they cut them in half to make them dorm room size and fill them up.

My wife, she just left the design business that she was in for years. I say she was set free! Now, she works with my daughter in the bodega we opened for the tamale company.

We had a catering kitchen, and catering dropped off the map. We had to do something. We opened up a bodega, which is like a corner store.

Describe how you processed the cancer diagnosis

I was like, okay. How did I get it? Where did it come from? How do I get rid of it?”

Those were the three things that entered my mind.

I thought, “I want to go to the MIT of cancer research.” I found out that that would be MD Anderson. That’s only four hours from here, from Dallas.

I would go down. I called them that day. “I need an appointment. I’ve got this and this.” They said, “Okay. Have all your records sent down here.” I sent my records down there. In two days, I had an appointment.

»MORE: Patients share how they processed a cancer diagnosis

Describe the treatment you underwent 

That’s where we did the R-CHOP chemotherapy. After one round, there was no evidence of disease, no evidence of cancer. I thought, “That sounds good. The chemo knocked it out. Let’s go! I’m done.”

They said, “No. You’re going to have to do five or six more [cycles].” So I did. At the beginning, I was really health-conscious in my diet and exercising and trying to stay fit, but I really had to step it up now that I had a culprit in my body. It wanted residence.

What were the R-CHOP side effects

It was hair loss and appetite loss. It’s just lose, lose, lose all the way around me, I thought. That’s why I needed to get out of the chemotherapy. I wanted to stop.

My going total plant-based diet was a big aid to that. Total plant-based was just something else to get excited about. What can I do? What kind of mushrooms beat cancer? 

No sugar. That was the first thing that went. No sugar, then dairy, then just total plant-based, and I was liking it. The new menus were interesting. It was exciting.

»MORE: Read other cancer patient experiences with chemotherapy

The Relapse

How did you know the cancer was back

Five years later, it came back, and I knew right away what it was. The tumor came back.

I call it the ‘culprit’ because I don’t like to name it what it is. Because it’s not going to stick around.

Because the tumor came back, I had edema in my leg. I tried to self-treat for seven or eight months. I just upped the vegan thing and tried to do more exercise and massage and sounds baths. I would do Reiki. 

What made you seek cancer treatment

My friend lives in Houston, but I’ll go down there and ride bikes. He just looked at my leg and said, “Oh, man, whatever you’re doing is not working fast enough. You need to have that looked at.”

I made the appointment to see Dr. [Farrukh] Awan. He just said, “Okay, you can continue what you’re doing, fine with me, or you can do this, or you can do this.” Then he said, “You know, there’s a non-chemo test I’d like you to take.”

I said that we have a tamale company. It was in the beginning of the tamale season, where it just goes berserk, so I just said, “How about January?”

He goes, “Yes, you’ll still have [the cancer] in January, I’ll still be here, and we can still do the same thing.” 

COVID-19 slightly shifted the path forward

Then COVID was at its peak. He just said, “No, we can’t start now. We’ve got half the staff, people are getting sick. It’s taking twice as long to see just one patient because of all the work you have to do, sterilizing, everything.” He just goes, “No, you can’t start.”

Then two days later, called me up, said, ‘Hey, we can do this. We can do this as outpatient.’

Describe the venetoclax-selinexor clinical trial

What was the regimen

I started with the selinexor and venetoclax. Then it causes nausea. My doctor kind of punched me in the arm, said, “Don’t be a cowboy. Take the [anti-nausea] medicine.” 

He’s right. I take it so you don’t have the symptoms, but you’d still have that feeling in your stomach.

What interested you about the venetoclax-selinexor trial over other options

My doctor said you can take it and go to work. Come in and we’ll watch you the first few times you take it, the first few weeks, because in the beginning it’s a step up [in terms of dosage]. 

You increase the amount, the dosage of each drug, itself. Then they want to watch you in the hospital to see for the first three days after you take selinexor.

That’s typically about two-and-a-half days for when I still take it because I only take that [drug] once every seven days.

Describe the clinical trial regimen of venetoclax and selinexor

Every day I take venetoclax. That’s seven tablets. They’re about the size of your average vitamin C tablet. It can be mistaken for that, about the same color tint. 

Seven of those, I just take them all at once. I take a bunch of water, make sure I can open my throat and just take all of them down. Also, an hour before that, they gave you some medicines to prevent nausea. I take those, set my alarm, then take the venetoclax after that. 

Then there are also other drugs you have two hours before you go to sleep to prevent nausea from when you wake up, but I usually don’t take that, I’m asleep and it doesn’t bother me. I don’t notice it when I wake up. It hasn’t been that intense with me.

Every day, seven pills. Overall, including the venetoclax, I take probably 13. Then the other pills are very small, for nausea. Another is something to help my lungs, keep me breathing better. They include:

  • venetoclax
  • prochlorperazine/compazine
  • olanzapine
  • loperamide
  • ondansetron
  • acyclovir (“twice a day, one in the morning and one in the evening”) 
  • allopurinol
  • selinexor (“a tiny blue pill that’s packed full of energy”)
How often do you take the selinexor

Once every seven days. I think it’s 80 milligrams, which I think is four tablets.

Describe the experience so far on the venetoclax and selinexor

I’m going into my fifth cycle, which will be my fifth month. The first three weeks, they admitted me to the hospital for three days. 

I loved it. [UT Southwestern] was a great, great hospital. I had a view in Dallas overlooking Love Field. The 22-foot windows, ceiling to floor windows. It’s during COVID, so nobody could come see me, not even the nurses. They didn’t want to come into the room. Only if they had to take blood, then they’d come in and out. 

I got lots of work done, made lots of phone calls. I read a lot, and got to watch a lot of planes land in Love Field at night. It was great. 

The second [hospitalization], they said, “Well, you’re doing so well. We don’t think you need to do it the third time.” When you go in, they say, “Because you’re on Medicare, if you think you’re being [discharged] too early, if you want more time, you can protest that and you can stay.”

I did that the second time. They said two days, I got to stay three. It was great. Nobody was around. I’m inside my own little resort. My wife used to love to see me go, too. “Oh, sorry to see you go!” (laughs)

They have a full menu. You can order all from 6:30 in the morning until 7 o’clock at night. You can order anything you want, all day long. It was great.

The third time, the third week, they say, “Oh, you’re doing so well. We don’t think you need to go into the hospital.” When they [mentioned] Medicare, I said, I’m switching it around. I think I should be admitted. I’m using my Medicare rules, so let me in!

I guess they thought I was funny, so they let me go in one more weekend. I was the poster child for the selinexor.

Describe any other side effects you dealt with

Well, it is pretty invigorating. In fact, I was never a night owl, but now I am. It’s like I don’t require that much sleep, although, I do sleep very well. 

TPS: You’ve had the opposite of fatigue, you had somehow a lot of energy.

That’s right. That’s the only place I know it’s coming from, is the tablets I’m taking. That’s what I think.

Describe the difference between the chemotherapy and this clinical trial

It’s like night and day. The R-CHOP, it’s torture. It’s not the disease that’ll kill you, it’s the treatment. At MD Anderson, it’s just massive acres and acres of zombies walking around. That’s what I saw. 

You got to talk to people because they’re everywhere. They’re on every transportation around the area coming in, you can’t avoid it. You can’t avoid not addressing it. It’s like, “Hey, what are you in for? How did you end up here today?”

People are more than eager to tell you, kind of waiting for somebody to ask them.

It was a day of travel and a day of chemo. You need a day to rest before you travel again. That was never any fun. 

It didn’t get better for a week. Then it got better, and then I’d say, oh no, I’ve got to go back, here we go again. But I was getting better. It was necessary for me to do that. That was the only thing I knew at that time.

The chemo regimen impacted your family, as well

If you don’t have support at home, you’re out of it. If your kids don’t want to eat that way or they don’t want to try new things, you’re cooking for yourself.

That’s no fun. I know just how much support [patients] need to do something as simple as changing what you eat.

How are you getting monitored on the clinical trial

Every other week, I have bloodwork. Once a month, I see the doctor. I’ve had two PET scans, not crazy about that because that’s just all sugar, but it gives a great picture. 

How was the progress of the venetoclax-selinexor trial

I saw pictures of the intruder, the culprit [the cancer]. When I started in January, it was like spreading into my kidneys and my whole lymph system. I saw [the tumor] in January.

It’s like a little tiny pea-size today. It’s gone. I felt that yesterday when I was having my PET scan, it’s just flat, nothing there.

No picture, no anything. It turned out great.

How does it feel to see so much progress made during this clinical trial

This works. It’s gone, this worked, or is working. I need to stay on this unless…

Every day, there are new studies coming out. I’ll do this for a while, keep it at bay, and then soon something will come up and say, “Here’s a clinical study. Take this pill one time and you’re good.”

That’s what’s on the horizon. When I was first introduced to CAR T in 2016, it was just like, I’m getting out of here. No way, you’re not doing that to me.

My wife and I asked the physician’s assistant, who was telling us all about CAR T. It was just like, no way you’re going to do that to me. 

Now it’s come a long way, too. The next thing is right around the corner.

How long will you be on the venetoclax-selinexor

In fact today, my doctor said forever, because the type of lymphoma I have, the diffuse large b-cell, unless I do the CAR T. As Dr. Awan said today, “Or you get the next thing that’s right around the corner.”

It’s rapidly happening all the time. More and more studies have been approved.

Managing your cancer like a chronic illness

I’ve just got to do it. Do what you’ve gotta do. What’s next? I don’t want to get all caught up in that. I just said, “Yes, that’s fine. I got it. I know how to do it. Let’s go on. What’s next?”

If you have trouble, think of it as you’re a boy scout. You’re working for your badge, and you’re going to get it because everybody else has got a badge, so you want that banner with all the badges on.

I did talk to a patient. I don’t remember their name or anything, but they said that we live better than the Vanderbilts ever did, or any of those people, the wealthiest of the wealthy people. 

We live so much better than they did because they didn’t have the same medical institutions that we have now. They got a cold, they could catch pneumonia and die. Running water and bathrooms and all that.

We live better than the Vanderbilts ever did, and the Rothschilds put together. It’s only getting better. It’s like, “What will they think of next?”

I’ve got more wealth than the Vanderbilts.

What turned you off about the CAR T process back in 2016

Oh, because you’re in the hospital and completely annihilate your immune system. You’ll be there for about two weeks. The last place I want to be is a hospital when you have no immune system. That’s where sick people are. It seemed so harsh. 

Then if they ever take your T cells out, send them to “college,” and then we put them back in, and there’s still a chance for all this stuff [to happen]. 

My wife and I asked the physician’s assistant, we said, “If this was your daughter, would you give her this treatment?” He couldn’t look at us, so we just said, “See you.” That was our answer.

Clinical Trials & New Research

How do you feel about participating in a clinical trial

We could be trendsetters. You’re part of this. When you beat cancer, how would you feel?

Yes, put me on the poster. We’re part of it. If you don’t think you can change the world, you’re doing it.

Describe what it’s like being in a clinical trial

Every day they ask for the time you take the medication, the dosage, and any comments. I have my list right here that I was reading before that I know what to take. Then there are my alarms on my phones. There’s a difference between being in a clinical study [and the chemo].

It’s not like going through chemo when you’re out of commission for two-and-a-half weeks because of what you did to yourself two-and-a-half weeks ago, submitting yourself to chemotherapy. 

[This time] I got my life back. Whether I had to take pills, I never thought I wanted to be the person who has the daily pill things all the time that I keep them hidden and I keep them in a sequence order that I take the pills.

I move them to one side of the cabinet because there’s so many of them. Like I said there’s 13 different ones. When I take them, I move it to the other side of the cabinet so I don’t forget. Then the next time I see them, I’ll move them across.

I have my list in there and take it because the clinical study, when you’re taking the dosage at home, they really want documentation. They want a back up. Not like, “Did he take these?” “Yes. I think so.”

What convinced you to participate in the clinical trial

Dr. Awan, he was really encouraging. He was just like, “You’re great, I support what you’re doing but after tamale season when [the cancer] is still here, I’ll be right here, and we can start whenever you decide.”

That was the complete opposite from MD Anderson where when I went down there, they were like, “We’ll get you started now.”

The doctor-patient relationship was key in deciding where to go for care

He’s a great guy. In fact, everybody on the staff is really good. They just talk to you, not as a patient, they just talk to you and tell you what’s going on.

They say, ‘Okay, here’s what it is, things are looking really good. Do you have any concerns or questions?’

They tell you what’s coming up. When they started to increase my dosage every week, it got more intense on the nausea. I don’t want to play up that so much.

It’s there and I don’t want to talk about it, because it’s not something to emphasize. You know ahead of time, it’s going to be there, you take the pills, boom. It’s good. 

I’d love to talk to somebody, some other patients, because mainly I have not ventured into going on the internet and finding out all about it. Finding out all this stuff. It’s like no, that’s not for me. I’m just going to keep on doing what I’m doing, live my life, selling tamales, and forgetting about it. 

Highlight the importance of the caregiver and the role that they play, these unsung heroes

I have a caretaker, Debbie, who takes care of me. I can count on her because I can go off in the other direction pretty quick.

We [patients] just got [the cancer], but they have to orchestrate the whole thing. They’re taking care of you. They’re making sure you stay alive, that you eat. 

My wife can make some gorgeous meal. I’m just like, “Oh, wow.” Then I just take one bite and just say, “I can’t. I just can’t.” She says, “That’s great. That’s fine. Just put it away.”

She helps me keep up with my friends because I don’t talk a whole lot about it, about my illness to my friends or actually anybody. I let my wife talk about it. If you need to know, she knows. It’s like, “Oh, how old am I? Oh, yes.” She keeps track of all that.

Why is it so important to find new treatments that might lead to better quality of life

Just being able to move and feel good and get about, not be sequestered somewhere, it’s freedom. 

I was just real fortunate to have my whole family behind me and actually caring more than I did sometimes when they make you do something.

Somebody would always take me to Houston [for chemo], either my daughter or my wife. That was a two-and-a-half day deal. The four-hour car rides are always the best conversations.

[It’s manageable] if you’ve got the support. I stay out of it most of the time. [My wife] tells me what’s on MyChart. Of course, I keep up on my medication. My phone or my alarm goes off, and my phone throughout the day for different reasons. 

The promise of new research

I’d like to encourage somebody to keep on going, because it does get better. I have [diffuse large b-cell lymphoma]. Well, it’s not going to go away, but like I said, the next thing is right down the line. 

CAR T would wipe it out forever. There’s an over-the-counter CAR T coming out, more or less over-the-counter. It’s simplified, which makes it a lot easier. 

I was talking to my PA, physician assistant. I bring in a record of what I take, what time I take it, how much of it I take, and any comments. I had everything all filled out.

He’s like, “Wow, this is amazing. You have everything documented.” I said, “I was told to keep it documented.” He goes, “Yes. Some people have taken so many other medications for different things, that they’ll say like, ‘Oh, I forgot to take it this week.'”

It’s like wow. It has to be built into the system, I would think, like the dosage. I could not just forget, like, “Oh, I forgot to take those.”

What’s your message to other patients about participating in clinical trials

The first thing I asked was what’s the success rate, and they’d tell you, realistically. Then I want to hear all the benefits. I don’t want to hear all the fine print, all the side effects. 

The one big thing that we talked about, upset stomach. There was this long with the other side effects. There could be more of a possibility to be struck by lightning. Who knows all those side effects.

Just go into it thinking you’re going to be cured. The [positivity], that helped me. I can see myself at the end of this. Even now, there’s no evidence [of disease], but I still have a ways to go.

It never really leaves you, the idea of [the cancer] coming back, but that’s okay. I’ll deal with that.

What has helped you get through prolonged cancer treatment

Know that there’s a god. You’ve got to find out for yourself. What better time than when you’re close to what you might think is the end of your life or something? What a better time to connect?

Have you ever heard of Wim Hof? He’ll change your life. He’s also known as the Ice Man, and he does breathing treatments. He’ll climb the Himalayas in his gym shorts. He’s an amazing guy and he does these breathing techniques. You do a round of those in the morning, and just you’re charged. 

Meditation is very important because I’m alone a lot, you better like being with yourself. Especially during all the quarantine we went through.

You have to want to be an introvert. You spend a lot of time alone, a lot of guided meditation. There’s some great ones on the internet. I use them all. I don’t want to commercialize this thing and name somebody’s name.

Meditation is great. Stay active. Stay physically active, walk. Walking also jogs the brain. If you walk with somebody, it makes the job move quick, too.

How important is it for people to share that and for other people to listen to the stories

Oh, it’s cleansing. It’s part of the healing. I’m talking to you, I made it this far. I’m going to tell you what else is going on. You learn a lot about yourself.

Maybe you put some limits on yourself that then when you hear yourself say it, you’re like, whew, did I say that? I guess I am like that. It brings change. Change where you have to.

There’s encouragement everywhere. I just want to pass that on. 


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Kayla’s Hodgkin’s Lymphoma Story: Classical, Stage 3A, Refractory to Gray Zone Lymphoma

Kayla was first diagnosed with stage 3A Hodgkin’s lymphoma, but after undergoing ABVD chemo, found out cancer was still there. It was possible she actually had gray zone lymphoma, so they treated her like a relapsed patient, undergoing more chemo and a transplant.

Now in remission, Kayla highlights dealing with two diagnoses, losing hair from chemo, and using naturopathic medicine.

  • Name: Kayla T.
  • Diagnosis:
    • Hodgkin’s lymphoma
    • Classical
    • Refractory cancer
      • Diagnosed as gray zone lymphoma, treated like relapsed patient
  • Staging: 3A
  • 1st Symptoms:
    • No real symptoms, pulled muscle in chest that prompted doctor visit
  • 1st Line Treatment
    • Chemotherapy:
      • ABVD
        • 7 months
      • Gemcitabine, dexamethasone & Rituximab
  • 2nd Line Treatment
    • Busulfan & cyclophosphamide
      • High-dose for 1 week just before SCT
    • Radiation targeted to chest
    • Stem cell transplant


I don’t like to bullshit. So, this is going to be a shitty experience, is probably the first thing.

You are going to get through it though. It might take you longer than other people. Your recovery might look different from other people.

But you are not alone.

Kayla T.

Diagnosis

What were the first symptoms

Just before Halloween, I was vacuuming behind my TV at a weird angle. I felt a rip in my chest. I thought I pulled a muscle.

I felt okay, but there was an immediate tearing sensation. A few days later, I was at the movies with my friend and then-boyfriend. 

I remember so distinctly, when I went to sit down in the seat, all of a sudden it felt like there was a vacuum in my chest. It was hard to breathe and it was cramping.

I didn’t want to cause a fuss, so I pushed through it for the movie. I was drinking water and taking shallow breaths. From them on for about a week or so, I just struggled.

I continuously had that ripping and cramping sensation. If you were sitting close to me, you could hear what sounded like a water bottle being crushed.

That was the sound my lung was making.

After about a week and a half, my mom said, “Enough is enough. I’m taking you to the ER because that doesn’t sound normal.” 

Hospital walk-in clinic visit

We actually wound up at a walk-in clinic next to the hospital first. The doctor had no idea what was wrong, but I could tell it was freaking him out. 

He said I needed to go to the hospital and get X-rays. We did that. They did the scan and some blood work.

I get bronchitis every year, so he compared my X-rays to ones I had a year before.

He did say my lymph nodes looked a little swollen, so he wanted to take it to the radiologist just to be sure. I didn’t have a pulled muscle or anything. 

Three days later, I was sitting at the art gallery I worked at. I got a call saying I had been scheduled for a CT scan.

They didn’t really tell me why. I just knew I was scheduled to get it.

How did you get the initial diagnosis?

I took my CT results, which they told me not to look at, but of course I did, to my doctor. I had looked up some of the things on the sheet, so I kind of already knew what was going on when I went in.

The respirologist (pulmonologist) who did my biopsy told me I needed to see an oncologist because he was pretty sure I had lymphoma. 

I said, “Oh. Okay.”

I was very unemotional about it. It didn’t really affect me as I thought it would.

My mom was like, “Are you okay? How are you feeling?”
I said, “I don’t know. I just know I have a test tomorrow.”

I was so focused on my studies and that really distracted me from the whole thing. I’m the kind of person who just does stuff. When he said it, I was just like, “Okay, what’s next? Let’s do it.” 

Tests and scans you underwent to get the official diagnosis

I did the CT, lymph node biopsy, another CT scan, a PET scan, and a bone marrow biopsy.

After all that, I got the final diagnosis. The bone marrow biopsy was able to tell if it was stage 3 or 4.

Stage 3 for me meant I had tumors above and below my diaphragm, but I was 3A because I was asymptomatic.

I still didn’t freak out. I just wanted to know what I had to do.

Describe the bone marrow biopsy

What they have to do is get your bone marrow and plasma out of your bone. They go into the biggest bone in your body, which is in the femur and hip area, and extract from there.

Your skin all feels frozen in the area. It sounds awful because it really is, but they stick a giant needle down into your bone through your back. 

If you’ve ever put your hand to a vacuum hose, it feels like that times 100 in your back. Since they’re going into your bone, it feels like the entire surrounding area is being sucked into a tube. 

At the end, they showed me their sample, and it’s so tiny! I was like, “All of that just for that?”

1st Line Treatment

Discussing your treatment plan

After all the results came back, my oncologist and I had a discussion. She said typically, they treat it with ABVD chemo over a six month period.

Then, I’d get a scan and see if I needed radiation or something. She asked when I wanted to start and told her I wanted to start the next week.

Right before, they did a bunch of blood work and breathing tests. I had a bunch of tests to make sure I was healthy enough for chemo. 

Getting a PICC line

For the first chemo, I didn’t have any external IV and that was excruciating. They made me an appointment to get a PICC line put in before the next one.

The PICC line basically goes into your arm and up to your chest cavity. It makes blood work and everything so much easier.

How was your first ABVD infusion

I wasn’t too nervous. I’ve never been squeamish around hospitals. I really didn’t know what to expect.

You see all these cancer movies, so you think you might know, but it’s really not the same. 

The nurses all pay special attention to you because it’s your first day. They just want to make sure you and your body are handling everything okay.

They go over each drug in detail, what the side effects might be, and how long each drug should take to infuse. Then a resident came and told me more about the side effects of chemotherapy.

I was told what to expect and what was normal. She also gave me some hospital support network resources should I want to use them.

Because I didn’t have a PICC line the first day, my infusion took a long time. It took six hours for all the drugs. Some of them hurt as they go through your veins, so they had to slow the infusion rate and add saline every time.

That’s another reason I opted for the PICC line afterwards, because I didn’t want to go through that pain every time. 

It was weird because I was 21 and I was here in this room with all these old people. I was like, ‘Cancer doesn’t discriminate!’

I would say it was more uncomfortable than anxiety-inducing or awful.

Side effects of ABVD chemo

When I was finished, I felt fine. I didn’t feel sick or weird. I felt a little heavy, but that’s about it. Then later that night, I puked everywhere. I ate a big bowl of soup and puked it all up. 

I also started having really bad upper body pains. I had to get some morphine the next time I went in because of it. 

The side effects came in different stages for me. For the first two months of my treatment, I had a lot of upper body pain, and it was also very cold.

I did have some vomiting, but the anti-nausea medicine is actually what was making me nauseous. I figured it out after the second time.

I told my nurses I was going to stop taking it, and they were fine with it. The nausea stopped. Never puked again. 

After the first couple of months, the fatigue really started kicking in more. It’s harder and harder on your body the longer you’re in treatment.

I was still in school, and I was working a part-time job. I was able to maintain a normal life to some extent. 

The biggest side effect I had was weight gain. I was on steroids for both years I was in treatment. They make you want to eat more, and even though I wasn’t eating that much more, they made me swell.

I was pale and swollen, and I was gaining two to three pounds consistently every week. I really wasn’t eating a lot, but it just kept adding up.

I gained 25 pounds during my first year of treatment. That was a really big blow. I had never weighed that much before, and I was normally very active.

That weight gain also caused quite a bit of pain because my body wasn’t used to supporting that much weight. I wasn’t working out at all at one point because I was just too tired. 

Hair loss

My hair fell out, but I kept about 30-percent of it. That was the worst for me besides the weight gain. I thought, “If I lose my hair, I can’t do this.” My hair was what defined me.

Even now, if I had to ever go through treatment again, losing my hair would be the worst part because you look at yourself in the mirror and you don’t even know who you are. It just makes you feel worse than you already do. 

»MORE: Dealing with hair loss during cancer treatment

What was radiation like

Halfway through my chemo, they did a scan. Some of my tumors had shrunk, but they hadn’t shrunk enough.

At the end of chemo, they decided to do the radiation. I did one month of radiation targeted to my chest.

You go Monday through Friday. It’s really quick. I would hold my breath, and the machine would draw lines over my body. They made me a custom head mask that kept me in the same place every time. It took all of 15 minutes every time. 

The only side effects I got from radiation was a dry throat and mouth and a mild sunburn on my chest.

Radiation was a walk in the park compared to chemo. I would take it over chemo any day.

I finished my chemotherapy and radiation treatment in June of 2015. In September, I went back for a follow-up and found out that my cancer was (still there).

Refractory Cancer & 2nd Line Treatment

Processing the news of refractory cancer

I was really focused on losing the weight. I wanted to get control of my life again. Throughout most of my university, I took summer classes, but this year I didn’t. I just focused on recovering and losing weight. 

I thought I was getting back to normal. I went in for a follow-up appointment.

That’s when they told me my treatment hadn’t worked and the cancer was still there.

I was really frustrated because my radiation oncologist told me there was a possibility the original treatment plan didn’t work because they had misdiagnosed me with the wrong cancer.

That really boiled my blood. He said he couldn’t prove it, but that’s what he thinks happened. 

We had a conversation about what to do moving forward. We didn’t want to do the same chemo regimen. They were going to treat me as a relapsed patient even though I was never officially in remission for those four months (refractory). 

As a relapsed patient, my new treatment plan was high-dose chemotherapy and a stem cell transplant. He told me I was going to have three months of really high-dose chemo that would kill everything in my body.

Then they were going to harvest my stem cells, give me more chemo for a week, and then they were going to give me my stem cells back.

He also said they would probably go ahead and do more radiation after the stem cell transplant just to be safe. He wanted to start right away.

»MORE: Read more relapsed/refractory cancer stories

Second line chemotherapy

I started chemo and got it once every three weeks. The first week afterwards, I couldn’t sit up or get up at all. I was horizontal for seven days. The next few days, I was slowly able to walk again. It was really hard to go to school. 

I had more weight gain because I was on steroids, but I didn’t have an appetite because I was so tired. I lost all my hair this time. I had a rash, and I got a lot of mouth sores.

What was the stem cell process like?

I went into the hospital and they hooked me up to what looked like a dialysis machine. Blood goes out, stem cells get taken out, and it gives your blood back. They collected a lot of cells and stored them in the freezer. 

That’s when I was referred to the stem cell transplant unit. I was in the day hospital since I was using my own stem cells for an autologous transplant.

I would wake up, go spend all day there, go home to sleep, and head back the next morning. I did that for about a month.

They were prepping my body for the transplant. I had a lot of IV drugs. I also got the strong chemo. It’s a two-day process for this one.

SCT chemo side effects

When I got it the first time, I instantly threw up. I had really bad upper body pain, so they sent me home with more morphine. 

I got two days of rest after that. They pumped me up with saline and hydration. On the fourth day, I got my stem cells back. It took like three minutes.

It’s gross because the whole room starts to smell like creamed corn and garlic. Your sweat smells like that. I stunk for about a week. 

Recovery after transplant

I had to be careful for 100 days. I got an infection at one point and had to go to the hospital to get a carry-out bag of antibiotics to carry around with me. 

They told me no physical contact with other people, no going to the mall, no takeout. I had to go to the hospital pretty much every day.

It wasn’t that bad. I’m pretty sure I went to school still. I don’t think I was supposed to, but I went when I had to.

One day, I went in for a blood work check, they told me my numbers were going up.There was one point where my nurse wanted to give me a transfusion, and I said absolutely not.

I’m really into natural healing and nutrition, so I asked my naturopath and started googling how to bring my platelets up.

I read that papayas are really good for that, so I was eating a papaya a day. The next time I went back, my platelets were much higher. 

I hate when people tell me I can’t do something or that naturopathic ways of living don’t work. You have to be open-minded about these things.

There has to be some kind of compromise in treating your body with natural and conventional medicine.

I personally think I had a better success rate and recovered faster because I was eating healthier food.

Reflections

Did you celebrate being in remission

I was so over cancer at that point, that I was like, “Okay, whatever.”

I was graduating university at the same time, so that was my reward. I also planned a trip with my friend to San Francisco a few weeks after they released me from the hospital. 

I don’t really remember celebrating necessarily because I still had so much shame. To the outside world, I was like, “Okay, let’s get back to my life,” but inside, there was chaos.

Going in-depth about the hair loss and emotional impact

My doctor told me all of my hair would probably fall out, but I’m stubborn. I basically willed my hair to stay in my head. I lost a lot of it, but I still had a thin amount.

When it started falling out, I remember one morning waking up, and it was just all over my pillow.

A few days later, I was brushing my hair in the shower, and clumps just started coming out. That shower alone probably took out a good 20% of my hair.

I had this weird ritualistic moment, and I was like, “Should I keep this hair? What would I use it for?” I was studying art, so I thought I might use it or something, but I never wound up using it. 

I had an issue with showing people how I really felt at the time. Even though I was telling everyone I was fine on the outside, it really brought me to a dark place. I felt very disassociated from who I was.

I lost all of my self-esteem. It was really hard for me to tell other people that. When I showed my mom the trash bag full of hair, she freaked out and asked if I was okay. I was like, “Yeah, it’s no big deal.” 

It was very devastating for me. I did everything I could to keep the hair I had left.

I wore caps at night, I bought protein shampoo, and I was also taking some naturopathic supplements to support my hair and skin.

During my first year of treatment, I was taking curcumin, vitamin D, BioSil, and a green protein I would put in drinks. I had bought hair extensions and sewed them into a hat. 

Advice for someone who’s about to lose their hair

It’s gonna suck. You have to somehow be ready for that, “oh shit” feeling to hit. Some people embrace it and shave their head.

I was never that brave because I was so ashamed about having cancer. I wasn’t able to be proud of my fight.

My advice is, if you’re like me, go buy yourself a wig and some fun hats. Come up with a creative solution that allows you to express yourself.

I couldn’t afford a wig at the time, so that’s why I did hair extensions. You can sew them into just about anything. If I could have afforded a wig, I would have definitely gotten one. 

Do something for yourself within your means that gives you your control back. Being able to style something on your body, even if it’s not your own hair, is really important.

When you look in the mirror and don’t recognize yourself, it’s really hard, so if you can do something to make yourself feel better, do it.

»MORE: Dealing with hair loss during cancer treatment

Using naturopathic medicine as a complement to western medicine

Everything started kicking off when I was 18 or so. I was having a lot of chronic pain, headaches, and just generally feeling unwell all the time, and I didn’t know what was going on. I got an allergy test done, and it revealed some allergies I knew about and some I didn’t. 

I was like, ‘Okay, I’m an adult now. I need to take care of my body.’ I’d always taken care of my body, but I wanted to be more conscious and aware of what I was putting in my body and how to support myself more holistically.

I saw a naturopathic doctor, and we came up with a plan together. I ended up getting diagnosed with fibromyalgia, which is a chronic pain condition that they really don’t know anything about. 

I was at the rheumatologist, and she said, “If you’re not sleeping well, I can give you a pill.” I thought, “I don’t want a pill. I want to figure out the reason I’m not sleeping and the cause of the pain and fix it.”

I told the naturopath what was going on and asked if she could help me. I’ve been seeing her for eight years now. We’ve worked really hard to support my adrenals and focused a lot on the foods I was eating.

I had been eating a lot of nightshade vegetables. They’re very inflammatory. I was already dairy-free and I went gluten-free. I started implementing little changes in my life. I felt night and day better within a few months. 

She has always listened to everything I have to say. She never discredits anything I say or makes me feel unheard. I trust her so much. She’s helped me more in six months than any doctor has in my whole life. 

Being a student with cancer

It was definitely weird. When I got my official diagnosis and everything, I emailed all my professors and told them what was going on.

I told them I wasn’t planning on dropping or anything, but I asked if I could do more work from home if it was okay with them. They were all super cool about it and so understanding. I went in when I could and if I had chemo or didn’t feel well, I didn’t go. 

Because I was in my fourth year at the time, I had a lot more days where I didn’t have classes. I tried to schedule my classes around that. I studied fine art and art history.

I was in my sculpture class presenting my project for the semester, and I had to tell everyone, “I’m sitting for my presentation not because I’m lazy but because I just had a bone marrow biopsy.” 

It was awkward telling my classmates more than my teachers. I feel like they all treated me like an alien after that.

I had this one teacher who told me it was okay if I needed to take a year off, and I was like, “No. I’m in school because it’s keeping me going.”

School helped motivate me. I almost treated school as a metaphor for myself.

Going to class, doing my projects, and handing them all in on time was like me showing cancer that I was going to beat it. 

I wasn’t very emotional. I didn’t talk about cancer because I didn’t want to. I think I really took what I felt and put it all into my schoolwork. I treated school as a metaphor for my body.

I thought, “If you just go to this lecture, if you just do this next project, you’ll be okay.” I equated graduating with me making it and living. 

Finding your cancer community

In the summer, I was watching TV with my mom. I turned to her and said, “I think I need to talk to somebody because I hate everything and everyone. I’m angry all the time.”

I fully admit it. I was an asshole to everyone. We talked to my oncologist, and he set me up with a therapist who deals with cancer patients and survivors. 

Going to see her for the first time was the first time I had openly talked about how I felt.

I was still staying on a very surface level. I wasn’t getting to the nitty gritty or anything. At that first session, she introduced me to Young Adult Cancer Canada. They are an organization who help young adults with or after cancer connect with other young adults who get it. 

She told me they were having a retreat a few weeks later. I told her I didn’t feel like sitting around a fire with a bunch of people with cancer.

She said, “It’s not like that, but I understand where you’re coming from. Go on the website and just see what happens.” 

I went home and looked into it, so I filled out the form. They accepted me, and the next thing I knew I was on a flight to Vancouver to hang out with a bunch of strangers. I’ve never felt more connected in my entire life. 

I still wasn’t very open because I didn’t know how much I was allowed to feel. Even without sharing as much as I should have or wanted to, being able to hear these stories of other people who had been through what I had been through was enough for me. 

That retreat pretty much changed my whole life. I go to all their events. I help people who are in the same place I was, so it’s very rewarding. Joining that community has changed me forever.

How did cancer shift your perspective

I have a perspective now that says, “Live your life and take in moments.”

I feel like everyone is always in a rush to get to the next place, to get the next big thing, or to be better at this or that. That’s fine, but in doing that, you miss all these nuances in life that are never going to happen again.

Having cancer really taught me to slow down, appreciate what I have now, and notice the moments.

I don’t take what I have for granted, and if I have a goal, I don’t say, “I’ll start tomorrow” anymore. I start today because I might not have tomorrow.

It also really taught me a lot about mental health in general. Suppressing your emotions is only going to hurt you and people around you more in the long run.

By not being honest with yourself, you lose that connection with what you’ve gone through, and it makes it harder to heal. 

I never talked about how I felt when I was sick, and I didn’t want my parents to talk about it with anyone because I was ashamed. Now? I’m like, “Tell the world!” By sharing your story and what you’ve gone through, you can not only help heal yourself but others going through something similar as well. 

Being brave isn’t always about smiling through the pain. It’s about being vulnerable and sharing how you’re feeling. 

What would you say to someone who has just been diagnosed

I don’t like to bullshit. So, this is going to be a shitty experience, is probably the first thing.

You are going to get through it though. It might take you longer than other people. Your recovery might look different from other people, but you are not alone. 

There are people around you who want to help you. You just have to take that step and ask for help. I never thought there was a light at the end of the tunnel for me.

It’s taken me years to realize that there is light. It just takes time. We don’t want to wait as human beings, but this is something that only time will heal.

Effort from you being honest is what will help move that along.

If you’re having a hard time, connect with someone online. Find a social worker who can give you resources.

If that’s too much for you, try doing something to connect with yourself. Write in a journal and accept your feelings.


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ABVD Adriamycin (doxorubicin) bendamustine (Bendeka) Bleomycin Bone marrow transplant brentuximab Carboplatin Classical dacarbazine (DTIC-Dome) etoposide Hodgkin Lymphoma ICE Ifex (ifosfamide) Relapsed and Refractory Vinblastine (Velban)

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Tylere’s Hodgkin’s Lymphoma Story: Classical, Stage 3, Relapse

Tylere shares his stage 3 Hodgkin’s lymphoma story, undergoing ABVD chemo and then suffering a relapse. He was able to get into remission after more chemo, immunotherapy, and a bone marrow transplant.

Explore below for more on how he also navigated life with cancer, fertility preservation, and the kind of support he needed during treatment.

  • Name: Tylere P.
  • Diagnosis:
    • Classical
  • Staging: 3, Relapse
  • Age at diagnosis: 24
  • 1st Symptoms:
    • Swollen lymph nodes in neck
  • 1st Line Treatment:
  • 2nd Line Treatment:
    • Chemotherapy:
      • 2 rounds of ICE
        • ifosfamide
        • carboplatin
        • etoposide
      • Bendeka (bendamustine)


One thing is when I finished maintenance chemo, people would say, ‘You’re done with chemo, so you’re done with cancer!’

No. I’m not. I have a hard time saying I’m a survivor. I still have a check up every six months, and the fear is always still there. I’m thriving after cancer, and I prefer the term “thriver” over survivor. I guess they kind of mean the same thing, but I like it better.

Tylere P.

Diagnosis

What were the first signs something was wrong?

I noticed I had swollen lymph nodes on the left side of my neck. My mom is a nurse practitioner, so I showed her when I was visiting one weekend.

I asked if we could go get it checked out. I asked her what it could be, and she said I could have some type of infection, or worst case scenario, that it could be some kind of cancer. I was like, “Oh. Okay.” 

We went to the doctor. They gave me some antibiotics, but the swelling didn’t go down even after a week of that.

Then I had a CT scan, and my mom was actually the one who told me first that she thought I had some form of cancer.

Lymph node biopsy

I was referred to the University of Michigan. They did a biopsy on one of the lymph nodes. That’s when it came back.

I had it biopsied and then had all these other types of tests to confirm that it was cancer and not some type of allergic reaction or infection. 

The first biopsy I had was a core needle biopsy in my neck. I had one biopsy in my neck where they just went in with a needle, and I had another one where they used local anesthetic and actually pulled out some of the lymph nodes. That was a weird experience.

He was like, “You wanna see it?”

It looked like a white jelly bean. They just put a band-aid on the place where they took the sample from, and I was good to go.  

When I relapsed later, I had a biopsy under my arm. That one was surgical. I had been under general anesthesia before, so I wasn’t super nervous. 

When you’re going in for a biopsy, just make sure you follow the doctor’s instructions. Don’t overthink it. I think they told me not to eat for a while before. Just follow all those types of directions.

When you’re there, you’re probably going to be there for a while because of all the paperwork and getting checked in. That’s where some of the nerves can really kick in.

It’s really not a big deal though. I remember being in the operating room for the surgical biopsy.

It was pretty much just the best sleep of my life. That’s about it. 

Processing the diagnosis

I honestly think I blocked that out. I just remember the phone call from my mom saying she thought I had cancer.

Once I got diagnosed, I was just worried about the next steps. I just had meeting after meeting and test after test. I was just going through the motions.

»MORE: Processing a cancer diagnosis

First Line Treatment

Getting a port

That was another moment when I went under. Not a big deal. The first few days after getting the port placed is weird though. I was very aware that it was there.

About a month or so later, I didn’t even realize it was there anymore. It became a part of me. It was probably weirder to get it removed than it was to get it placed.

ABVD chemotherapy regimen

My first time on chemo was 12 rounds of ABVD chemo. I went in once every two weeks. I did blood work and had my port flushed on weeks I didn’t have chemo. 

My white blood cell count was too low a few times, so we had to delay chemo a bit and do some Neulasta shots. 

ABVD side effects

The chemo regimen was pretty easy. It didn’t have too much of an effect on me.

I was prepared for vomiting and being sick all the time. I was ready for my hair to all fall out right away, but it didn’t fall out until the second month or so. 

I lost my taste, or it changed at least. Water had a metallic taste and was the most disgusting thing ever. Ice cream was terrible too.

I found some fruity drinks, and those were good because they didn’t just taste like chemo.

Other than that, I was just really tired for a day or so after chemo. I didn’t really get nauseous or anything like that. My mom would drive about three hours to come stay with me after infusions.

Halfway through the treatments, I started to feel bad because I felt like she wanted me to be sick so she could take care of me, but I wasn’t feeling sick.

I think she wanted me to, but I didn’t really need her because I tolerated everything well. 

»MORE: Cancer patients share their treatment side effects

Relapse and Second Line Treatment

When did you find out you had relapsed

I got a scan during chemo to check everything out. About two days after starting chemo in January, my lymph nodes went down.

After finishing chemo, I had a scan a few weeks later, and everything still looked good. Then I got one every three months after that. 

The December after finishing chemo, that’s when they told me it was back. I kind of felt like something was up. I had a swollen lymph node under my arm, so I was anxious to get it checked.

At that point, I was almost a year out of treatment. I had been getting back into being active and living my normal life. I was getting excited with what I was going to do with work and everything changed because I relapsed. 

Relapse was definitely harder than the first time. The first time around, [the diagnosis] was new and almost exciting.

I’m someone who likes to be challenged, so I was just ready to figure the process out. 

They had told me chemo was going to be so hard, and I was like, “Is it really?” I just wanted to see if it was going to live up to the hype. For the most part it didn’t.

I’m happy about that, but I was also like, “Aww, man. I feel like I missed out on the cancer experience in some ways.” I’m also really happy I didn’t struggle through that chemo though, don’t get me wrong. 

The second time around, I felt like, “Well, damn. What now?” It sounded way more serious and aggressive, and it was a bummer for sure.

Describe the second line chemotherapy (ICE)

My surgical biopsy results came back sometime in January. I started my new chemo the first week of February.

That was ICE (ifosfamide, carboplatin, etoposide) chemo. That required a three-day hospital stay. I would get it infused twice a day. I did that once a month for two months. 

They weren’t happy with how little my numbers had dropped, so we had to change up my regimen.

The new one was brentuximab and Bendeka. According to all the billing, those were very expensive drugs.

I didn’t have any side effects with those two drugs.

My hair still grew. It was a quick infusion. It started working, and they were happy with the results. Then it was time for a bone marrow transplant. 

Bone Marrow Transplant

What was the preparation for the bone marrow transplant

I donated my own marrow. That made it easier. They told me all the terrible things that could happen with the transplant, but it actually went pretty smoothly, too.

They wanted me to be active while I was in the hospital and get up and walk around. 

For the week before the transplant, I got some really high-octane chemo. It basically destroyed everything in my body. I would walk for 20 to 30 minutes a day during that point. 

Side effects of the chemo before transplant

There were a couple of days I was constipated, but that’s about it. My temperature was rising a little bit after the hardcore chemo, and we had to watch that, but it never got so high it was scary. 

Describe the bone marrow transplant

The collection is pretty cool. When they take your blood out, you’re sitting in this room for like four hours.

There’s a big metal rod for one arm, and it’s taking blood, so you can’t use that arm.

Then, in your other arm, it’s putting the blood back in, but it spins out all the cells it needs before giving the blood back to you. 

What was the transplant itself like?

When you get it back in, it looks like everything has just been on dry ice for however long. They put in a PICC line.

I didn’t use my port for anything bone marrow transplant related. They just push the cells back in your body through your line. 

Apparently, for the next few days, you and your room smell like creamed corn. I couldn’t smell it, but my room just had this odor.

I felt bad for anyone who came in, but it went away for a few days.

Recovering from the BMT

Twelve days after the transplant, I could take handfuls of hair out. Aside from that and losing a ton of weight in the hospital, I didn’t really have any side effects.

I probably lost about 20 or 30 pounds in those three weeks I was in the hospital.

I could ride in a car, but I couldn’t drive for ten days. I couldn’t be outside in direct sunlight. I had to wear pants, long sleeves, hats, and lots of sunscreen. For 100 days, I couldn’t drink tap or well water. I had to drink bottled water. 

Maintenance chemo protocol

I had to get maintenance chemo once every three weeks for a year after the transplant. That was just the brentuximab.

The worst part of that chemo wasn’t even the drug itself. It was the Benadryl. I would just drive myself, and they wouldn’t let me go home until that wore off. I asked if I had to have it, and I didn’t, so we stopped that. 

Either going into the transplant or afterwards, a doctor mentioned remission to me. Essentially, I was in remission during the transplant. Then I had to do the maintenance chemo just to make sure. 

Survivorship

Transitioning back into everyday life

This summer will be three years since my last chemo. They gave me a certificate at my last treatment, and I rang the bell.

That was kind of it. It was like, “Okay. Now what do I do?” 

I started my own business right before the chemo for the bone marrow transplant actually. I started a business doing photography and videography.

That’s been my life for the last four years. I’m not sure if many people start a business while they’re going through chemo, but that’s what I did.

I didn’t know if I was going to be able to work during any of this. I didn’t know if I should apply for other jobs. I didn’t want to have to deal with any of that.

It was easier to start my own thing with odds and ends here and there, and it turned into something a little bigger and better. Now that’s what I get to do all the time. 

One thing is when I finished maintenance chemo, people would say, “You’re done with chemo, so you’re done with cancer!”

No. I’m not. I have a hard time saying I’m a survivor. I still have a check up every six months, and the fear is always still there. I’m thriving after cancer, and I prefer the term “thriver” over survivor. I guess they kind of mean the same thing, but I like it better. 

It’s just strange to have a life-defining moment that lasts for years and then to have it just be over. 

Dealing with the fear and anxiety that comes with survivorship

For me, faith plays a big part in that. I trust that what’s going to happen is going to happen. There’s only so much I can do and control. I try to focus on the things I have control over. 

That’s something that this cancer experience has taught me. I don’t have to stress out about the things I can’t control.

In college, I was big into leadership stuff. I listened to a lot of motivational speeches and things. My biggest takeaway from all of that was that the main thing we can control is our attitude towards things.

Even when I was diagnosed, that’s why I was like, “Okay. Cool.” I could’ve asked “Why me?” or any of those questions, but it just wasn’t worth it. 

I acknowledge those bad thoughts when they come, but then I choose not to dwell on them and move on instead.

Mental and emotional side effects of cancer

I never had any terrible breakdowns. If I was bummed sometimes, I would just be bummed. I’d say, “You’re not going to get anything done today. That’s okay.”

I would just sleep all day and rest up for the next day when I hopefully felt better. 

I felt like I wasn’t doing enough a lot of times. I feel like life kind of went on pause. I saw my friends getting married and having kids, and I was living in my parents’ basement.

That wasn’t anything I had any control over. That’s the situation I was in, and I just had to recognize the bad days.

Even now, if there’s a day when I know I have stuff to do, but I’m going to struggle through it and not be productive anyway, I’ll just take the day and chalk it up to a personal day.

Reflections

How can loved ones support the patient

As the patient, you can set boundaries and tell people how you want to be supported. One thing I would like to see more people do is say, “This sucks. I’m sorry this is something you’re having to deal with. It’s terrible.”

Rather than saying, “Hey we’re thinking of you,” that’s more validating. Then ask if there’s anything you can do to help.

You don’t want to put the onus on the patient to ask for help, so you can offer ways you can help and see if they take them. In my experience, it was easier to just communicate those needs I had.

People would say, “We’ll send you food or whatever you need.” I don’t like a lot of clutter and things, so I was like, “I don’t want anything like that.” 

It’s a hard thing to say no to people, but you can set boundaries. The easiest way to support someone is to just ask, “How can I best support you?”

Maybe it depends on your love languages. 

Can you talk about hair loss

The first time, it definitely sucked. When I found out I was gonna lose it, I had been trying to grow my hair out and was pretty pumped about it.

I just had to accept it. I probably held onto it for a week longer than I should have. 

I decided to shave it, and we had this whole big thing with friends. We videoed me shaving it, and a lot of them shaved their heads too. That was super fun.

That first shower or two I took after shaving my head was crazy. I realized there was a whole process I didn’t have to go through anymore. It was a bit colder in the shower, but I was also in there for less time. 

The second time, I vlogged the whole experience pretty much. I wanted to show people what going through it was like, and to show that I could still be a normal person.

It was something I could point to when people asked me questions as well. That way I didn’t have to keep answering the same questions over and over again. 

By the third time, I was actually kind of excited. The first two times, I buzzed it. The third time, I was literally able to just pull it out. It was coming off so easily. 

People don’t have to shave their head with you. They can just be there for you. Let’s say you don’t have that kind of support, and you’re doing it by yourself.

Still, throw a party for yourself when you go to shave it.

Make it fun. The whole experience sucks, so finding fun in it was the best thing I could’ve done. Laugh through the pain. That makes it a little easier.

»MORE: Dealing with hair loss during cancer treatment

Financial toxicity: paying for cancer treatment

Dealing with health insurance was probably more stressful than dealing with any of the chemo.

Leading into the bone marrow transplant and everything else, I was still on my previous employer’s health insurance. I kept that through COBRA because everything was already pre-approved. 

I was also on Medicaid for the next year to do the maintenance chemo and scans. That was hard because I could only make so much money in order to stay on this insurance plan. It made it hard to grow my business.

I got a denial for one of the chemo treatments. That’s the only real reason I know how much it costs. Insurance still denied it even though my doctors appealed the first denial.

I didn’t hear anything for a few months, so I thought it was taken care of, but then I got another bill. I asked how I ended up with this bill.

The hospital’s response was, “Remember when you came in here at the beginning and were super stressed out and anxious and dealing with a cancer diagnosis and you signed all those forms accepting financial responsibility in case insurance didn’t cover something?”

I was just like, “Sure. I don’t understand how this works.” What if I didn’t want that chemo had I known this could happen? I was trusting the doctors and hospital staff to get all that approved and taken care of before giving me the treatments. 

I appealed the decision again. I had to do a bunch of stuff. I don’t understand why I, as the cancer patient, had to be doing all this.

Finally, the financial services office at the hospital took care of it. Being low-income had its advantages. 

Advice for others on dealing with cancer payments

I got a three-ring binder and would put everything financial and insurance-related in there by date.

All of a sudden, you start receiving bills, explanations of benefits, and all that. I wish I would’ve gotten the binder sooner.

Fertility preservation

I don’t remember how it was brought up, but I think it was my first meeting with the doctors. Either my mom or the doctors asked me.

I was like, “Obviously it’d be nice to have kids one day, and I’d like them to be mine.”

I did the whole preservation thing. I had a sample frozen. That’s also expensive to store. It’s about $900 a year just to store it. 

That’s already going to be a pretty expensive kid. I’m glad I did it though because I’ve talked to people who didn’t, and now they’re bummed that they don’t have the option.

»MORE: Fertility preservation and cancer treatment

Message for someone who has just been diagnosed

Try to be a light everywhere you go, especially at the hospital. Try not to be [rude] to your nurses and doctors. They’re there to help you.

Unless you’re living in some weird universe where they’re not, then I would find new doctors. Hospitals are already a dark place. Just try to be a light. 

Ask questions, but don’t act like you know more than the doctor or nurse because you saw something online. If you did see or hear something, you can bring it up. Just don’t be rude. 

There’s the organization Stupid Cancer and they put on CancerCon. I went last year, and that was the coolest thing. It was a room full of people who have experienced a lot of the same things that you have. 

Wash your hands. Literally just become really good at washing your hands. Get really good at washing your hands.

Even through chemo, I traveled a lot. I asked if I needed to wear a mask, and they were like, “Oh, those don’t do anything. Just wash your hands.”

Also, maybe find a hobby. For me, that was learning to sew. I would watch Netflix and sew.

That was a good time killer, and it was a good way to keep my mind busy.

A lot of it is just embracing what you’re going through. Keep some normalcy.


Thank you for sharing your story, Tylere!

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Moe C., Hodgkin's, 2B, Relapse



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Fabiola L., Hodgkin's, Stage 2BX



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Categories
ABVD Adriamycin (doxorubicin) BEAM Bleomycin Bone marrow transplant brentuximab carmustine Chemotherapy Classical cytarabine Cytoxan (cyclophosphamide) dacarbazine (DTIC-Dome) etoposide Gemzar (gemcitabine) Hodgkin Lymphoma Ifex (ifosfamide) IGEV Immunotherapy melphalan Navelbine (vinorelbine) Relapsed and Refractory Vinblastine (Velban)

Hodgkin’s Lymphoma Stories: Stage 2BX, Relapse | Fabiola’s Patient Story

Fabiola’s Hodgkin’s Lymphoma Story: Classical, Stage 2BX (Bulky Disease), Relapse

Fabiola shares her Hodgkin’s lymphoma, from getting staged at 2BX (bulky disease), undergoing six cycles of ABVD chemo, relapsing, going through more chemo (IGEV), a bone marrow transplant (BMT), BEAM chemo, and then immunotherapy.

She also highlights the importance of getting good support, self-advocacy, and survivorship.

  • Name: Fabiola L.
  • Diagnosis:
    • Hodgkin’s lymphoma
    • Stage 2BX
    • B= having specific symptoms like unexplained weight loss, fever
    • X = Bulky disease (site of disease >10 cm or bulky relative to chest size)
    • Relapsed after first chemo
    • Complete response after bone marrow transplant
  • 1st Symptoms:
    • Shortness of breath
    • Dry cough
  • Treatment:
    • ABVD chemotherapy (1st Line)
      • Adriamycin, bleomycin, vinblastine, dacarbazine
      • 6 cycles
        • Bi-weekly for 6 months
        • Tota: 12 infusions
    • IGEV high-dose chemotherapy (2nd Line)
      • Ifosfamide, Gemcitabine and Vinorelbine
      • 4 cycles
      • Each cycle = 4 days in hospital
      • Duration: 3 months
    • Bone marrow transplant (BMT)
      • Cyclophosphamide chemo before stem cell collection
      • Slow collection: 2.7 million stem cells over a week
    • BEAM chemotherapy
      • Carmustine, etoposide, cytarabine, melphalan
      • 7 infusions
      • Up to 3x/day
    • Immunotherapy: Brentuximab
      • 1x every 3 weeks
      • 1 year

Table Of Contents

The time will pass.
You will get through treatments.
You will ring the bell at the end of your chemo or radiation.

The most important thing is to heal. You need to heal emotionally, spiritually, mentally, and physically. We are often so concerned about the physical aspect of the disease that we forget how important our mental health is.

I suppressed my emotions and at the end I was very depressed. I have healed but it was not an easy road. Take care of yourself, every aspect. Be kind to your body and nurture your mind.

Fabiola L.

Diagnosis

What were your first symptoms

For several months I had shortness of breath and a dry cough. I dismissed these signs because I believed it was a cold or a flu.

»MORE: Hodgkin’s lymphoma patients share common first symptoms

What led you to go to the doctor’s

In the summer, I had a motorcycle accident. I decided to go to urgent care where they did an ultrasound of my chest, neck, and abdomen.

My healthcare provider decided to follow up with an MRI that showed extensive disease progress. At this time I was unaware of what was going on. I thought it was routine work-ups.

List the tests and biopsies you had to undergo before diagnosis

In August, I had my first MRI. This was one of the worst tests I had to have done. I did not know how small an MRI machine was. I felt like I was suffocating and became very scared.

After a 45-minute exam, my eyes could not stop running, I kept crying and prayed I never had to have another MRI in my life.

Because the MRI showed a 16cm x 18cm mass in my chest and several smaller masses in my neck, my health care provider sent me in for a needle biopsy of my neck in October.

This was a simple outpatient procedure where they used lidocaine and inserted a needle with a guided ultrasound. This exam allowed them to take several sample of the lymph nodes that showed disease.

At this point, I was still unaware of what was occurring. On November 6, I was diagnosed with Hodgkin’s lymphoma, bulky disease.

Describe the moment you were diagnosed

In November, both of my grandparents passed away. I was in class doing a biology lab when I got an unknown phone call.

I decided to answer the call believing it was my mom telling me she was going to fly out to Mexico for the funeral. This was not the case.

It was my health care provider calling me to tell me I had lymphoma, a cancer, and tried to explain to me how lucky I was. That this was the best cancer to have.

I remember not being able to breathe. I sat outside of my classroom and my eyes just teared up. I was so heartbroken.

I was studying hard to be part of the medical profession and now I had become a patient.

I remember being so afraid to sleep, so I stayed in school until 2 AM in the library working on my senior thesis. The moment of my diagnosis felt like I was in a complete standstill. I continued to work on homework but I have never been the same since my diagnosis.

»MORE: Patients share how they processed a cancer diagnosis

How did you break the news to your loved ones

After the call, a professor of mine saw me and asked what was wrong. I told her and she quickly offered to take me home but I decided I couldn’t break my parents’ heart anymore. They had suffered enough pain from losing their parents.

I decided to call my sister who has always been my best friend. Within minutes of talking to her, my entire family called me asking me if it was true. I was a marathoner, I ate the healthiest. This was the worst news anyone could have received.

»MORE: Breaking the news of a diagnosis to loved ones

Describe that first meeting with the oncologist

My first meeting with my oncologist was difficult. It occurred a few days before Thanksgiving. He quickly ordered a PET scan and ordered a port-placement.

The visit made my diagnosis real.

He explained to me that without treatment I would only live two months and would pass in my sleep because the tumors were engulfing my my trachea and lungs. It was hard hearing this. I decided that I couldn’t be with a doctor who was so cold and had a poor prognosis.

Getting a second opinion

I decided to get a second opinion from Dr. Stewart at City of Hope. On December 26, I met with her and she changed my whole perspective about my disease.

She reassured me. She gave me so much hope and allowed me to believe that I would be okay.

What did you like about being at a smaller or bigger place for treatment?

With my initial treatment, which consisted of six months of ABVD chemo treatment, the facility was small. It was four floors and the infusion room had about 18 chemo chairs.

I loved being here, it felt like family. I went in for chemo every other week for eight hours and the nurses always provided me with comfort.

When I relapsed, I was inpatient at a large facility. With my first admission I was overwhelmed, nervous, and scared. I had never been hospitalized.

How was your medical team?

My entire healthcare team was extraordinary!

The volunteers guided me through the facility, my doctor was my greatest cheerleader. She kept pushing  me, believing in me, and always encouraged me when I was down.

She wanted me to stop going to school but when I refused she always kept pushing me to do better and feel better.

Because of my oncologist I was able to graduate college. I really believe it was my doctor who encouraged me and was there for me the most.

But I did have an entire healthcare team that always provided me with reassurance, love, and comfort.

First Line Treatment & Side Effects

First ABVD chemo cycle

With my initial treatment, I underwent six months of ABVD chemotherapy, which was done bi-weekly and took about six to eight hours.

»MORE: Read our comprehensive ABVD chemotherapy info page

ABVD chemo side effects

The side effects of ABVD were tolerable. Reglan and zofran (anti-nausea medication) allowed me to eat. Reglan was my best friend. Zofran helped but it gave me headaches. However, the steroids made me gain about 20 pounds.

Recovering from ABVD chemo

After chemo was over, I was overwhelmed with emotions. I was so happy but also so nervous that the cancer would come back. I struggled emotionally to return to a “normal state.”

Your hair loss

Hair loss was hard. For so long I pretended I was not sick but the hair loss made me feel so vulnerable and it broke me.

I felt like the cancer had stripped away my dignity, and took away my identity and life.

Were you surprised by your reaction to losing hair?

I was at a restaurant where I felt my hair just fall. When I removed my hair tie, about 90-percent of my hair fell out. It was painful and hard. There are no words to describe the way I felt about this.

»MORE: Dealing with hair loss during cancer treatment

What helped with the hair loss

I only wore cotton beanies. It kept my head warm, protected me from the sun and made me feel better. I hated wigs.

»VIDEO: The Patient Story Video: How to Cope with Hair Loss

Describe the first follow-up scan

I had several follow-up scans during my chemotherapies, which all showed stable disease or slight reduction. In July 2014, I was told I was in complete remission.

Temporary remission

This remission lasted six months. I went in for a follow-up scan and blood work two days after my graduation that showed new tumors in my body.

This follow-up was hard. I could not believe it. I continued working until we had more answers about my scan.

How did you approach the issue of fertility preservation

Before starting high dose chemo, my oncologist scheduled several biopsies and lung function tests. She also sent me to a fertility clinic because I would (likely) become infertile with these lines of treatments.

She called her friend who was a fertility specialist and within a few weeks we began the egg retrieval process. I could not have survived all of this without the support of my doctor.

»MORE: Fertility preservation and cancer treatment

Second Line Treatment & Side Effects

Describe the second line chemo (IGEV)

When I relapsed, I received high-dose chemotherapy that was done inpatient. This treatment was called IGEV and was done four times over the course of three months.

I received this from July 2015 to September 2015. Each hospitalization was four days and each day included a mixture of the chemotherapies. IGEV chemotherapy was hard my hemoglobin fell to 5.0 (normal is 12 to 14) so I was fatigued, had weakness, and was unable to eat at times.

What were the side effects
  • Severe nausea
  • Fatigue
  • Loss of appetite
  • Weakness
  • Low blood counts. I had to inject myself everyday for a week with Neupogen to make sure my white blood cell counts (WBC) were high and I was not at risk for infections.
What helped prevent the side effects

I ate small meals and always made sure I was not in crowded places when my blood counts were low.

Recovering from IGEV chemo

During this chemo I knew I still had a long process to go. I just wanted to rest before the “real fight” began.

Bone Marrow Transplant

When did your oncologist talk about the bone marrow transplant (BMT)?

My oncologist knew right away after I relapsed that I would need to do a bone marrow transplant. She told me that without a transplant, I had a 95% chance of relapsing. With a bone marrow transplant, my chances of a relapse decreased to 50%.

A bone marrow transplant was my real chance at a cure.

Describe the preparation before the bone marrow transplant (BMT)

After completing IGEV, I was sent to the bone marrow transplant team where I received cyclophosphamide chemotherapy prior to stem cell collection.

Because I had received so much chemotherapy, stem cell collection took very long. I was only able to collect 2.7 million over a week. Typically people take two days to collect that amount.

I had to have Mozobil, which is an injection to stimulate your bone marrow to produce stem cells, every night before I went in for collections. These injections cause severe bone pain.

After collecting enough stem cells I had to receive the okay from the cardiology, respiratory, nephrology team to ensure my vital organs were healthy enough for the transplant.

»MORE: Hear from a Bone Marrow Transplant specialist

What additional chemo did you have to undergo

I was admitted on November 22, two days before Thanksgiving, where I began BEAM chemotherapy.

Describe the high-dose BEAM chemotherapy

BEAM chemotherapy was done for seven days. Sometimes I received chemotherapy three times a day. This was emotionally and physically hard.

I remember telling my nurse, “You are hanging another bag of chemo? Why?” When my nurse left I could not stop crying.

The chemo made me feel so sick. I had never experienced such high levels of pain when I swallowed, when I moved, and the exhaustion is indescribable.

I remember I had to shower everyday and it felt like I had run a marathon. My muscles were sore, my legs felt weak, and often times I had to sit on the restroom floor to change because standing up was too difficult.

How was the brentuximab (immunotherapy) infusion

Brentuximab was the “easiest” treatment. It was done within an hour infusion and 30 minutes of pre-medications. I received this treatment every three weeks for a year for a total of 18 rounds.

Brentuximab side effects

There was no hair loss. My hair actually grew. Slowly, but it grew.

I had severe muscle pains, and a year later, I still have peripheral neuropathy that the treatment caused. My walking is a lot better but for over a year I walked with a limp.

What helped you prevent the side effects

I was on Reglan for nausea and took Gabapentin everyday for almost two years to improve my nerve damage that the drug caused.

After the Transplant

When did you learn you were in complete remission?

I was told I was in complete remission on October 15. I was so happy and overwhelmed with emotions. I returned to work and continued school, I graduated May 2 the next year!

How often do you have follow-up appointments and scans?

After finishing my treatments, I now see my oncologist every three months where she does blood work. Every six months we do a PET scan to ensure the cancer is still in remission.

Advice on “scanxiety”

Scanxiety is the worst experience anyone can have. I have been in remission for two years and the weeks leading up to a scan paralyze me.

I become so scared because I do not want to fight this disease a third time. I fear losing my job, my hair, my school. I fear losing “the sense of control.” Scanxiety has become better over the years but after relapsing they are hard.

I now run, remind myself that I have enough strength to keep going even if the results are not what we hope. That has empowered me to face scans head on.

»MORE: Dealing with scanxiety and waiting for results

Finances & Support

Financial toxicity: paying for cancer treatment

The financial aspect was difficult. I had to stop working and school was expensive. I was fortunate to have some support from my sister.

I was very fortunate to be covered under my dad’s health plan which covered every treatment, biopsy, surgery, and scan.

Could you study or work through treatment

I was able to study, although my doctor was reluctant to the idea until I told her I couldn’t lose another thing. She agreed and realized how strong school kept me.

What do you wish you had known to help with the financial process

I was able to get unemployment. When I relapsed and required a bone marrow transplant, my doctor suggested disability for me.

I had no idea I was eligible for disability until I was undergoing the bone marrow transplant process.

My boss never explained to me what I was eligible for, she just signed the paperwork stating my leave of absence had been approved.

Did you have help in preparing for issues outside of treatment

My family took care of me. My sisters brought groceries over, my dad made sure I had the best health insurance through his employer, eating was difficult so my mom made simple soups or salads (if I was not neutropenic).

What type of support was most helpful

The best support I had was friends just listening to me, not saying anything, just listening. I had so many friends who left my side because it became overwhelming.

I had friends tell me I was not the picture of cancer. I have to say I just needed someone by my side not saying anything, just being fully present.

»MORE:  What kind of support cancer patients say helped the most

How important is it to have caregivers

Caregivers get the cancer, too. They suffer so much because they want to take away the pain and they want to do everything to ensure we are okay.

Caregivers are the heart, they keep us going, they fight for us when we are too weak to fight, they advocate for us, they mend our brokenness.

Reflections

What surprised you most about the experience

What surprised me the most was the inner strength that I discovered in myself. Cancer is such a scary and lonesome disease, but through social media, I was able to find a support system of survivors that empowered me to move forward every day.

When I thought I would be unable to move forward, I kept going. When my cancer came back I felt robbed and couldn’t breathe.

But when I got into my car after being told it had returned I drove to the mountains and did a ten-mile hike to remind myself that there was more life to me, that I was more than just cancer.

What helped you manage your emotions and thoughts

Running helped. Being busy with schoolwork. Going to Disneyland every Friday with my little sister, running half-marathons, and listening to music that inspired me.

What got you through the toughest times

My sister decided to sign me up for a marathon that I did two months after my transplant. The transplant was the hard. I would pray because I wanted to die, the pain was unbearable, the nausea was draining and the constant throwing up brought me to my knees.

My sister believing in me, believing that I would make it, kept me going. My doctor telling me your glass is half full, keep going my hero. That pushed me when I wanted to give up.

Did you use alternative or holistic medicine

Yes, we tried alkaline water, expensive juices. The cancer never improved, so I stopped spending the money. I put all my trust in my chemo and my doctors.

Were there moments you had to advocate for yourself in and out of treatment?

My doctors did not want me to go to school. I advocated for myself. I told them that school was all I had and I couldn’t lose something else because of cancer.

I asked them to let me walk around the units because I felt isolated and depressed when I did my transplant.

»MORE: How to be a self-advocate as a patient

Navigating survivorship

It has been a couple years since my last treatment and there are certain days when things are just hard. I just want to breakdown and cry, some days I just want to lie down.

Life after cancer is a roller coaster of emotions. You just have to buckle in and ride it out. Most days are good, I am able to see beauty in everything and wake up feel fortunate to be alive.

I do believe cancer survivors suffer from PTSD. To this day my heart races when I drive past my hospital, so many things trigger such vivid memories.

How do you handle the anxiety around follow-up scans and your health

Running is my escape. It allows me to believe that I can overcome the fear because I know that I will continue to place one foot in front of the other.

I also try to schedule next-day appointments so that I am not waiting to see if I get calls from my oncologist.

Message to other patients

I know they feel alone and scared. I felt the same way. When I was diagnosed my whole world fell apart.

I would tell them that they are not alone, that so many of us have survived and are thriving after our battle.

I would tell them to make goals for themselves, to plan something so that they can have something to look forward to, to believe they are much stronger than this disease.

They are not defined by this disease, to not feel betrayed when friends walk away, to advocate for themselves but most importantly to fight like hell, to believe in themselves.

And to never, ever give up on hope.


Thank you for sharing your story, Fabiola!

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Hodgkin’s Lymphoma Stories

Hodgkin’s Lymphoma Stories: Nodular Sclerosis, Stage 1B | Madi’s Story

Madi J., Hodgkin's, Stage 1B



Cancer details: Most common and most treatable form of Hodgkin lymphoma
1st Symptoms:
Shortness of breath
Treatment:
3 rounds (6 infusions) of ABVD chemo
Hodgkin’s Lymphoma Stories: Classical, Stage 2 | Danielle’s Patient Story

Danielle D., Hodgkin's, Stage 2



Cancer details: Diagnosed at age 25
1st Symptoms: Swollen lump on right side of neck/chest area, continued to grow
Treatment: ABVD chemotherapy (3 cycles = 6 infusions)
Hodgkin’s Lymphoma Stories: Classical, Stage 2 | Lani’s Patient Story

Lani S., Hodgkin's, Stage 2



Cancer details: Tumor pressing on heart
1st Symptoms: Appendicitis led to CT scan that found tumor
Treatment: ABVD chemotherapy, 7 cycles
Hodgkin’s Lymphoma Stories: Stage 2A | Jason’s Story

Jason F., Hodgkin's, Stage 2A



Cancer details: Diagnosed at 39
1st Symptoms: Itchy legs, bloated face and “upper trunk,” slow-healing wounds, asthma worsened
Treatment: 6 cycles (12 infusion) ABVD chemo, 18 radiation therapy sessions
Hodgkin’s Lymphoma Stories: Stage 2A, Adolescent (AYA) Cancer | Logan’s Patient Story

Logan A., Hodgkin's, Stage 2A



Cancer details: Diagnosed at age 15
1st Symptoms:
Lump in neck & fatigue
Treatment:
4 cycles of ABVE-PC chemo
Hodgkin’s Lymphoma Stories: Classical, Stage 2A | Helicon’s Patient Story

Helicon K., Hodgkin's, Stage 2A



Cancer details: Found lymphoma cells in adenoid tissue
1st Symptoms: Difficulty breathing with blockage in nose, surgery to remove tissue resulted in discovery of Hodgkin lymphoma cells
Treatment: ABVD chemotherapy (4 cycles), radiation (20 sessions)
Hodgkin’s Lymphoma Stories: Stage 2A, Relapse, Nodular Sclerosis | Lauren’s Patient Story

Lauren C., Hodgkin's, Stage 2A



Cancer details: Diagnosed at 23 years old with nodular sclerosis, relapsed after 6 months of 1st-line treatment
1st Symptoms: Itchy body, enlarged lymph node over collar bone
Treatment: ABVD chemotherapy and ICE, radiation, and stem cell transplant for relapse
Hodgkin’s Lymphoma Stories: Classical, Stage 2A, AYA Cancer | Wade’s Patient Story

Wade W., Hodgkin's, Stage 2A



Cancer details: Diagnosed at 18 years old
1st Symptoms: Enlarged lymph nodes (around neck), diagnosed at 18 years old
Treatment: ABVD chemotherapy (2 cycles), AVD chemotherapy (4 cycles)
Hodgkin’s Lymphoma Stories: Stage 2B, Relapse, Transplant| Moe’s Patient Story

Moe C., Hodgkin's, 2B, Relapse



Cancer details: Diagnosed at 19, relapsed before remission
1st Symptoms: Fatigue, weight loss, night sweats
Treatment: ABVD chemo, DHAP chemo, MINE-R chemo, splenectomy, autologous bone marrow transplant
Hodgkin’s Lymphoma Stories: Stage 2BX, Relapse | Fabiola’s Patient Story

Fabiola L., Hodgkin's, Stage 2BX



Cancer details: Stage 2 with bulky disease, relapsed after 1st chemo. Remission after 2nd chemo & bone marrow transplant
1st Symptoms: Shortness of breath, dry cough, fatigue
Treatment: ABVD chemo (6 cycles), IGEV chemo, bone marrow transplant, BEAM chemo, brentuximab
Hodgkin’s Lymphoma Stories: Classical, Stage 2BX | Stephanie’s Story

Stephanie O., Hodgkin's, Stage 2B



Cancer details: Stage 2 with bulky disease
1st Symptoms: Shortness of breath, dry cough
Treatment: Stanford V chemotherapy (12 weeks, 1 infusion each week), radiation (20 days)
Hodgkin’s Lymphoma Stories: Stage 2B | The Patient Story

Charlie B., Hodgkin's, Stage 2B



Cancer details: Diagnosed at 32
1st Symptoms: Lump in neck
Treatment: ABVD chemotherapy
Hodgkin’s Lymphoma Stories: Classical, Stage 2B | Katee’s Patient Story

Katee P., Hodgkin, Stage 2B



Cancer details: Accidentally found in x-ray after months of symptoms
1st Symptoms: Night sweats, fatigue, extreme itchiness, persistent cough
Treatment: Clinical trial; AAVD chemo, immunotherapy
Hodgkin’s Lymphoma Stories: Stage 2BX | Mara’s Patient Story

Mara T., Stage 2BX (Bulky)



1st Symptoms: Shortness of breath, back pains, daily migraines
Treatment: 3 rounds of ABVD, 3 rounds AVD, Radiation
Topics: Self-advocacy, mental health
Hodgkin’s Lymphoma Stories: Classical, Stage 2X| Jade’s Patient Story

Jade B., Hodgkin, Stage 2X



Cancer details: Diagnosed at 21 years old
1st Symptoms: Itchy legs and feet
Treatment: ABVD chemotherapy (4 treatments), AVD (remaining treatments)
Hodgkin’s Lymphoma Stories: Classical, Stage 3, Relapse | Tylere’s Story

Tylere P., Hodgkin, Stage 3



Cancer details: Mother is a nurse practitioner; suspected cancer
1st Symptoms: Swollen lymph nodes in neck
Treatment: Clinical trial; Chemotherapy, BMT
Hodgkin’s Lymphoma Stories: Stage 3A, Refractory to Gray Zone Lymphoma | Kayla’s Story

Kayla T., Hodgkin's, Stage 3A



Cancer details: Possibly misdiagnosed the first time; later diagnosed as grey zone lymphoma
1st Symptoms: Pulled muscle in chest
Treatment: ABVD chemo, radiation, high-dose chemo, stem cell transplant
Hodgkin’s Lymphoma Stories: Stage 3B | Erica’s Patient Story

Erica H., Hodgkin's, Stage 3B



Cancer details: Staged at 3B
1st Symptoms: Intense itchiness, fatigue, night sweats, weight loss
Treatment:ABVD chemotherapy, 6 cycles (12 infusions)
Hodgkin’s Lymphoma Stories: Stage 4 | Nicole’s Patient Story

Nicole M., Hodgkin's, Stage 4



Cancer details: Staged 2 then 4 after second opinion
1st Symptoms: Extreme fatigue, persistent itching on lower half of legs
Treatment: 6 cycles (12 infusions) chemo, ABVD then AVD (dropped bleomycin)
Hodgkin’s Lymphoma Stories: Stage 4, Classical | CC’s Story

CC W., Hodgkin's, Stage 4



Cancer details: Diagnosed at 29, misdiagnosed as mono
1st Symptoms: Achiness, extreme fatigue, reactive rash on chest and neck. Later: chills, night sweats
Treatment: ABVD chemotherapy (6 cycles)
Hodgkin’s Lymphoma Stories: Classical, Nodular Sclerosis, Stage 4A | Lia’s Story

Lia S., Nodular Sclerosis, Stage 4A



Cancer details: Most common and most treatable form of Hodgkin's lymphoma
1st Symptoms:
Extreme lower back pain
Treatment:
ABVD chemotherapy
Hodgkin’s Lymphoma Stories: Stage 4B | Ava’s Patient Story

Ava O., Stage 4B



1st Symptoms: Trouble digesting, weak immune system, raised glands, night sweats, chest pain, extreme fatigue
Treatment: 6 cycles of ABVD chemotherapy
Topics: Emotional grieving, mental health, letting go
Hodgkin’s Lymphoma Diagnosis Stories| The Patient Story

Delishea A., Hodgkin's, Stage 4B



1st Symptoms: Extreme itchiness and dry cough
Treatment: 6 cycles of chemo, radiation, Adcetris
Topics: Finding community & support, self-advocacy
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Categories
ABVD Cancers Classical DHAP Hodgkin Lymphoma MINE-R Relapsed and Refractory

Hodgkin’s Lymphoma Stories: Stage 2B, Relapse, Transplant| Moe’s Patient Story

Moe’s Hodgkin’s Lymphoma Story: Stage 2B, Relapse, Transplant

Moe was diagnosed with classical Hodgkin’s lymphoma at just 19, as a medical school student. He went through 12 cycles of ABVD chemotherapy before he unfortunately, the cancer was refractory, meaning it did not respond to first line treatment.

He then underwent four cycles of DHAP chemotherapy, a splenectomy, MINE-R chemotherapy, and autologous bone marrow transplant before reaching remission. Thank you for sharing your story, Moe!

  • Name: Moe C.
  • Diagnosis (DX)
  • Age at DX: 19 years old
  • 1st Symptoms
    • Fatigue
    • Night sweats
    • Weight loss
  • Treatment
    • ABVD Chemo
    • DHAP Chemo (2x)
    • Surgery (splenectomy)
    • MINE-R Chemo
    • Autologous Bone Marrow Transplant

Table Of Contents

You will have bad days but please make sure that you are not alone. A family member, a friend, a spouse, a son, or even a neighbor can provide you with help and support when needed.

You do not have to fight this battle alone. So stay strong, keep your head up high and I will be one of the many survivors waiting for you at the end of the tunnel.

Dr. Moe C., Hodgkin’s Lymphoma

First Symptoms and Scans

When did you realize something was wrong

My story begins in October 2007. I was a second-year medical student when I started to have a loss of appetite. One of my favorite foods at that time was a double cheeseburger from McDonald’s and I was not able to bear the smell of it at that time.

I did not pay attention to what was going on, especially that some exams were approaching. I was living alone at that time and my family was away.

Things started to get worse with fatigue and night sweats. I remember waking up at night with my sheets drenched in sweat.

I went to my family for a visit, that’s when I noticed that I had an almost six kilograms (13 pounds) weight loss in a month’s period. 

»MORE: Hodgkin’s lymphoma patients share common first symptoms

What happened at the first doctor visit

We went to a family doctor who recommended a CT scan after he found some enlarged lymph nodes in my armpit and neck.

Your family kept you in the dark about the possibility of cancer

Since I’m of Middle-Eastern descent, it is unfortunately common for family members to hide bad news from the one affected. So I had no idea what was going behind the scenes, especially since I was 19 years old and had zero experience with cancer.

Describe the CT scan

The first thing that I had was a whole body CT scan and I can still remember the heat you feel inside when they inject the contrast material. This was followed by a brain MRI and the annoying sounds it makes.

Describe the bone marrow biopsy

One of the most horrible experiences in my life was the bone marrow biopsy. It was performed in a clinic with local anesthesia and I had no clue what was going on.

It was November 2007. I was taken to another doctor. I later found out he was a hematologist, who told me that he wanted to give me an injection in my buttocks area and I must not move while he was doing that.

It turned out that he was going to perform a bone marrow biopsy. He only administrated local anesthesia and then he advanced the thick needle of the biopsy.

It was one of the most severe pains I had in my entire life. I started to scream and shout simultaneously while my dad and uncle held me in position. 

At that time I didn’t even know I had lymphoma. I was instructed to face a wall, laying down on a cold clinic bed and to bend my knees. I screamed a lot that day and I cried a lot, and I still remember the doctor telling me not to move and to “man up.”

That’s when you first heard “cancer”

When I came back home, I demanded to know what was going on and why am I undergoing all of these extensive tests. That is when my family told me that they suspected cancer.

I started my search online about lymphoma since it was at the top of differential diagnosis. 

Describe the excisional biopsies (two)

I had a mediastinal biopsy (the area between the two lungs) and due to bad processing, this biopsy was insignificant. The procedure was done under general anesthesia.

When I woke up, I found all of my family members there. It is such a blessing to have an amazing family by your side.

The second biopsy was taken from my neck, and it was done under local anesthesia. It was quite uncomfortable to be awake while someone was poking in my neck, but it was painless and the result came back with a diagnosis.

Describe the tuberculin skin test

After this biopsy, I had a tuberculin test, the skin test that they do in order to know if you had tuberculosis or not, which is not accurate. My result was borderline and a family physician decided to start me on anti-TB medications.

When I started to have red urine, I got very scared, but then I was told it was just a side effect from the medication. At that time, I was back in medical school in Jordan away from my family, so it was a weird experience.

When did you get the biopsy and scan results back

The biopsy and the scan results came back very fast before diagnosis, around the day after. Since I had no idea I had cancer at that time and I was 19, I did not have any anxiety or fear. I believe the scanxiety kicked in after starting treatments.

»MORE: Dealing with scanxiety and waiting for results

Hodgkin’s Lymphoma Diagnosis

How did you learn the diagnosis

After the bone marrow biopsy, I asked my mother what was going on and what they know. She sat down with me, tearful, and told me about the diagnosis.

Being a second year medical student, I searched for the disease and I educated myself enough but nothing can prepare you for what’s to come.

How did you process news of the cancer diagnosis

I was pretty calm. No crying. I sat down and googled what Hodgkin’s lymphoma was. It was a self-defense mechanism I believe is called “intellectualization.”

»MORE: Processing a cancer diagnosis

How did you break the news to loved ones

They were the one who broke the news to me. Then I told my close friends. Again, I was young with zero life experience at that time, so it was not as traumatic as it was expected.

»MORE: Breaking the news of a diagnosis to loved ones

Treatment Decisions

How did you decide where to get treatment

After the biopsy was definitive, an immediate decision was made to start the treatment in the same dreadful clinic that I had the bone marrow biopsy at.

The issue of fertility preservation came up

They were preparing the first dose when my dad asked about infertility and if they could offer sperm banking.

At that moment, the doctor said that it was unethical since I was not married and he did not approve.

Later we found out that he was making those decisions based on some personal religious point of views. My dad told him to stop the process and we left the clinic.s

»MORE: Fertility preservation and cancer treatment

Did you get a second opinion

We sought out a second opinion after the sperm banking issue and we went to Lebanon. They re-examined the pathology slides and I had my first PET-CT scan.

I was also introduced to “The Red Room,” which is utilized to give a semen sample in order to complete the sperm banking process.

How was your medical team 

It was the best team I could ever pray for, including my oncologist and his colleague, his assistant, and the nursing staff. I am still friends with all of them. They are the reason I am still here talking and breathing.

They are the real heroes in my story.

First Line Chemotherapy and Side Effects

Did you get a port or a PICC line

I had a port inserted. Over the span of all my treatments, I had three ports inserted and removed. I insisted on removing it every time a treatment was done and then they inserted a new one when I had a relapse and so on. I was young and foolish.

Describe the ABVD chemotherapy cycle 

ABVD was a breeze, compared to what came after. One of the things that I was mostly worried about was my family, especially my mother.

I pushed myself to the limit in order to stay strong and maybe that is what made the first line of treatment less hard on me.

Describe the ABVD chemo side effects

The only side effect that I had from ABVD was the nausea which was controlled by Ondansetron.

»MORE: Read our comprehensive ABVD chemotherapy info page

Did you lose your hair

I did not lose my hair and surprisingly, my hair’s texture changed from frizzy and coarse to smooth and silky, which was so weird. 


»MORE: The Patient Story: How to Cope with Hair Loss
How was the post-ABVD PET scan

I remember that time that my sister was undergoing scans suspecting she had cancer, as well. Thankfully, all her tests came back negative.

After getting the news, we were in the car together and I remember hugging her and saying, “Thank God it wasn’t you,” while crying. 

After the ABVD, I had a feeling that my cancer story wasn’t over. I had a feeling that there would be a second battle. When we got the news my cancer was still there, I was with my mother and sister.

Second Line Treatment: DHAP Chemotherapy 

Describe your experience with DHAP salvage chemotherapy

Everything went downhill when I started DHAP.

The nausea was very poorly controlled with all medications available and my hair started to fall in chunks on the second cycle.

We were in France at that time and I couldn’t believe how fast things were deteriorating. I was medically doing okay, but it was too much to process I believe.

They prescribed DHAP chemotherapy and to start the process of preparation for a bone marrow transplant, including stem cell collection.

What did you do after losing hair

My mother helped me shave my hair at that time and I had the idea to start my own YouTube channel to document what was going on. The idea that saw the light when I started the actual bone marrow transplant procedure.

»MORE: Dealing with hair loss during cancer treatment

How did you start the process for the bone marrow transplant

The only problem with being in France was the fact that I didn’t speak the language at that time, so it was very difficult to communicate. The stem cell collection happened during my hospital stays in France while taking a cycle of DHAP.

Describe the stem cell collection procedure

I was taken by an ambulance with my mother to another facility for collection. I was asked to spread my arms while laying on a bed and they inserted two large needles in my veins which were hooked to a processing machine.

It was the longest six to eight hours of my life. I was not able to bend my arms at all, and my mother provided help when my nose itched or I was in need of water or something else.

After stem cell collection was completed, I was taken back to the hospital and soon after, we went to Paris in order to have a change of scenery before heading back home.

After DHAP and stem cell collection, you were found to be in remission

I was declared in remission after four cycles of DHAP and it was decided to keep me under close observation. The second round of DHAP happened a couple months after in November that year.

Relapse & Bone Marrow Transplant

When did you learn you had relapsed

In February 2010, problem areas in the spleen got larger in size and I was considered to be having a relapse. I underwent splenectomy which confirmed the diagnosis of a relapse. 

I was started on a second line salvage-chemotherapy of MINE-R in preparation for an autologous bone marrow transplantation. 

Describe the MINE-R chemo before the bone marrow transplantation

The MINE-R was really difficult. I never had vomiting during my previous two regimens but this time, I started to have a yellow vomit coming out every now and then. It was never controlled by any medication.

The hair did not return by the time we started MINE-R so I have no clue how fast would it have fallen.

Describe the bone marrow transplant preparation

I was first admitted in the hospital and started on the highest dose of MINE-R. Then the bone marrow transplant began. I had facial swelling that was expected to be an abscess but it wasn’t. I was informed that at any moment, I might be transferred to the ICU in case I deteriorated, which did not happen.

Some of the most horrible side effects were the oral thrushes and ulcers. They started to appear during the first week and I was unable to swallow. I was instructed to use carbonated drinks as a mouthwash which was helpful, in addition to other medications.

Throughout the BMT, I had a continuous feeding machine hooked to my port in order to provide me with the needed nutrients.

How was the bone marrow transplant recovery

My mother, and father were with me on a daily basis. They were not allowed to sleep over so it was worse at nights, being alone. I had my friends on Facebook at that time. My sisters and brother were sending emails.

When we got close to the end (Day 35), a nurse rapidly lowered the morphine dose that I was on. That resulted in withdrawal symptoms. I started to twitch all over and I was not able to sleep at all. A

At that time, we asked for my mother to stay with me during the nights because I needed someone to be by my side. Then I started to have diarrhea which was super annoying and they refused to discharge me until it was resolved.

What’s been your follow-up protocol since the BMT

Follow-ups started with PET-CTs every year. The last one happened in about eight years after diagnosis.

Reflections

What helped you get through the hardest times

During and after my treatments, I was started on low-dose Xanax based on my oncologist’s recommendation. But I believe my family, nurses, and my friends were the true supporters during my darkest times.

The first few years after the BMT were hard on me and I had to go to a psychiatrist in order to just have someone to talk to about my fears and concerns. I wanted to give my family a break from the cancer horrors. Besides, they suffered enough.

How important is it to have caregivers

I wouldn’t be here if it wasn’t for them. It is one of the most crucial elements during a treatment process.

Were you able to ask people for support

I was lucky enough to find people around me all the time. During my hospital stays in Lebanon, when I was in good shape, nurses used to take me for a walk and pretend we were going for a trip or something which made me crack up in laughter.

I believe that God knows that we, cancer patients, are in need of support during our treatments and he blesses us with kind people.

How has cancer impacted your life

Cancer helped me to become a new person. It changed my whole life perspective. I became more compassionate as a person and I valued life more than ever.

One of the things that people do not talk about is the “chemo brain” after effect, which I personally suffer from. I believe a lot of people suffer from that and it is not addressed properly.

This is why we are starting a new program in our region to spread awareness about this side effect.

How has your experience as a patient helped you now as a doctor

Working in a cancer center after my own experience was a challenge for me. I applied for the position in order to help other patients and ease their pain, but I was afraid that I would crumble with all the flashbacks that I would have.

Thankfully, I was able to support my patients and to establish strong bonds with each and every single one of my fellow cancer patients, trying my best to be there for them and their families.

Whenever I see a patient who gave up on life and is ready to raise his or her white flag, I share some of my story which provides them with that extra dose of hope knowing that people do survive from that vicious disease.

Last message to other patients

The word cancer is scary and you have every right to be frightened, but do not let that fear take over you. Use this fear to harness the needed power to overcome this illness and rise stronger and tougher than ever before.

You will have bad days but please make sure that you are not alone. A family member, a friend, a spouse, a son, or even a neighbor can provide you with help and support when needed.

You are strong and you will make it out of this nightmare but do not be afraid to ask for help and support from those who you love. They will provide you with hope and strength and they will ease your pains. You do not have to fight this battle alone.

So stay strong, keep your head up high and I will be one of the many survivors waiting for you at the end of the tunnel.


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Hodgkin’s Lymphoma Stories

Hodgkin’s Lymphoma Stories: Nodular Sclerosis, Stage 1B | Madi’s Story

Madi J., Hodgkin's, Stage 1B



Cancer details: Most common and most treatable form of Hodgkin lymphoma
1st Symptoms:
Shortness of breath
Treatment:
3 rounds (6 infusions) of ABVD chemo
Hodgkin’s Lymphoma Stories: Classical, Stage 2 | Danielle’s Patient Story

Danielle D., Hodgkin's, Stage 2



Cancer details: Diagnosed at age 25
1st Symptoms: Swollen lump on right side of neck/chest area, continued to grow
Treatment: ABVD chemotherapy (3 cycles = 6 infusions)
Hodgkin’s Lymphoma Stories: Classical, Stage 2 | Lani’s Patient Story

Lani S., Hodgkin's, Stage 2



Cancer details: Tumor pressing on heart
1st Symptoms: Appendicitis led to CT scan that found tumor
Treatment: ABVD chemotherapy, 7 cycles
Hodgkin’s Lymphoma Stories: Stage 2A | Jason’s Story

Jason F., Hodgkin's, Stage 2A



Cancer details: Diagnosed at 39
1st Symptoms: Itchy legs, bloated face and “upper trunk,” slow-healing wounds, asthma worsened
Treatment: 6 cycles (12 infusion) ABVD chemo, 18 radiation therapy sessions
Hodgkin’s Lymphoma Stories: Stage 2A, Adolescent (AYA) Cancer | Logan’s Patient Story

Logan A., Hodgkin's, Stage 2A



Cancer details: Diagnosed at age 15
1st Symptoms:
Lump in neck & fatigue
Treatment:
4 cycles of ABVE-PC chemo
Hodgkin’s Lymphoma Stories: Classical, Stage 2A | Helicon’s Patient Story

Helicon K., Hodgkin's, Stage 2A



Cancer details: Found lymphoma cells in adenoid tissue
1st Symptoms: Difficulty breathing with blockage in nose, surgery to remove tissue resulted in discovery of Hodgkin lymphoma cells
Treatment: ABVD chemotherapy (4 cycles), radiation (20 sessions)
Hodgkin’s Lymphoma Stories: Stage 2A, Relapse, Nodular Sclerosis | Lauren’s Patient Story

Lauren C., Hodgkin's, Stage 2A



Cancer details: Diagnosed at 23 years old with nodular sclerosis, relapsed after 6 months of 1st-line treatment
1st Symptoms: Itchy body, enlarged lymph node over collar bone
Treatment: ABVD chemotherapy and ICE, radiation, and stem cell transplant for relapse
Hodgkin’s Lymphoma Stories: Classical, Stage 2A, AYA Cancer | Wade’s Patient Story

Wade W., Hodgkin's, Stage 2A



Cancer details: Diagnosed at 18 years old
1st Symptoms: Enlarged lymph nodes (around neck), diagnosed at 18 years old
Treatment: ABVD chemotherapy (2 cycles), AVD chemotherapy (4 cycles)
Hodgkin’s Lymphoma Stories: Stage 2B, Relapse, Transplant| Moe’s Patient Story

Moe C., Hodgkin's, 2B, Relapse



Cancer details: Diagnosed at 19, relapsed before remission
1st Symptoms: Fatigue, weight loss, night sweats
Treatment: ABVD chemo, DHAP chemo, MINE-R chemo, splenectomy, autologous bone marrow transplant
Hodgkin’s Lymphoma Stories: Stage 2BX, Relapse | Fabiola’s Patient Story

Fabiola L., Hodgkin's, Stage 2BX



Cancer details: Stage 2 with bulky disease, relapsed after 1st chemo. Remission after 2nd chemo & bone marrow transplant
1st Symptoms: Shortness of breath, dry cough, fatigue
Treatment: ABVD chemo (6 cycles), IGEV chemo, bone marrow transplant, BEAM chemo, brentuximab
Hodgkin’s Lymphoma Stories: Classical, Stage 2BX | Stephanie’s Story

Stephanie O., Hodgkin's, Stage 2B



Cancer details: Stage 2 with bulky disease
1st Symptoms: Shortness of breath, dry cough
Treatment: Stanford V chemotherapy (12 weeks, 1 infusion each week), radiation (20 days)
Hodgkin’s Lymphoma Stories: Stage 2B | The Patient Story

Charlie B., Hodgkin's, Stage 2B



Cancer details: Diagnosed at 32
1st Symptoms: Lump in neck
Treatment: ABVD chemotherapy
Hodgkin’s Lymphoma Stories: Classical, Stage 2B | Katee’s Patient Story

Katee P., Hodgkin, Stage 2B



Cancer details: Accidentally found in x-ray after months of symptoms
1st Symptoms: Night sweats, fatigue, extreme itchiness, persistent cough
Treatment: Clinical trial; AAVD chemo, immunotherapy
Hodgkin’s Lymphoma Stories: Stage 2BX | Mara’s Patient Story

Mara T., Stage 2BX (Bulky)



1st Symptoms: Shortness of breath, back pains, daily migraines
Treatment: 3 rounds of ABVD, 3 rounds AVD, Radiation
Topics: Self-advocacy, mental health
Hodgkin’s Lymphoma Stories: Classical, Stage 2X| Jade’s Patient Story

Jade B., Hodgkin, Stage 2X



Cancer details: Diagnosed at 21 years old
1st Symptoms: Itchy legs and feet
Treatment: ABVD chemotherapy (4 treatments), AVD (remaining treatments)
Hodgkin’s Lymphoma Stories: Classical, Stage 3, Relapse | Tylere’s Story

Tylere P., Hodgkin, Stage 3



Cancer details: Mother is a nurse practitioner; suspected cancer
1st Symptoms: Swollen lymph nodes in neck
Treatment: Clinical trial; Chemotherapy, BMT
Hodgkin’s Lymphoma Stories: Stage 3A, Refractory to Gray Zone Lymphoma | Kayla’s Story

Kayla T., Hodgkin's, Stage 3A



Cancer details: Possibly misdiagnosed the first time; later diagnosed as grey zone lymphoma
1st Symptoms: Pulled muscle in chest
Treatment: ABVD chemo, radiation, high-dose chemo, stem cell transplant
Hodgkin’s Lymphoma Stories: Stage 3B | Erica’s Patient Story

Erica H., Hodgkin's, Stage 3B



Cancer details: Staged at 3B
1st Symptoms: Intense itchiness, fatigue, night sweats, weight loss
Treatment:ABVD chemotherapy, 6 cycles (12 infusions)
Hodgkin’s Lymphoma Stories: Stage 4 | Nicole’s Patient Story

Nicole M., Hodgkin's, Stage 4



Cancer details: Staged 2 then 4 after second opinion
1st Symptoms: Extreme fatigue, persistent itching on lower half of legs
Treatment: 6 cycles (12 infusions) chemo, ABVD then AVD (dropped bleomycin)
Hodgkin’s Lymphoma Stories: Stage 4, Classical | CC’s Story

CC W., Hodgkin's, Stage 4



Cancer details: Diagnosed at 29, misdiagnosed as mono
1st Symptoms: Achiness, extreme fatigue, reactive rash on chest and neck. Later: chills, night sweats
Treatment: ABVD chemotherapy (6 cycles)
Hodgkin’s Lymphoma Stories: Classical, Nodular Sclerosis, Stage 4A | Lia’s Story

Lia S., Nodular Sclerosis, Stage 4A



Cancer details: Most common and most treatable form of Hodgkin's lymphoma
1st Symptoms:
Extreme lower back pain
Treatment:
ABVD chemotherapy
Hodgkin’s Lymphoma Stories: Stage 4B | Ava’s Patient Story

Ava O., Stage 4B



1st Symptoms: Trouble digesting, weak immune system, raised glands, night sweats, chest pain, extreme fatigue
Treatment: 6 cycles of ABVD chemotherapy
Topics: Emotional grieving, mental health, letting go
Hodgkin’s Lymphoma Diagnosis Stories| The Patient Story

Delishea A., Hodgkin's, Stage 4B



1st Symptoms: Extreme itchiness and dry cough
Treatment: 6 cycles of chemo, radiation, Adcetris
Topics: Finding community & support, self-advocacy
Favorite0
Categories
ABVD Adriamycin (doxorubicin) Bleomycin Classical dacarbazine (DTIC-Dome) Hodgkin Lymphoma ICE Radiation Therapy Relapsed and Refractory Stem cell transplant Vinblastine (Velban)

Hodgkin’s Lymphoma Stories: Stage 2A, Relapse, Nodular Sclerosis | Lauren’s Patient Story

Lauren’s Hodgkin’s Lymphoma Story: Stage 2A, Relapse, Nodular Sclerosis

Lauren describes getting diagnosed with stage 2A Hodgkin’s lymphoma at 23 years old, then relapsing after ABVD chemo.

She celebrated remission after undergoing radiation and a stem cell transplant, spotlighting issues like financial toxicity, deciding not to work during cancer treatment, and self-advocacy as a patient.

  • Name: Lauren C.
  • Diagnosis:
  • Age when diagnosed: 23
  • Staging: 2A
  • 1st Symptoms:
    • itchy body
    • lump above collar bone
  • Treatment:
    • Chemotherapy
      • 12 treatments of ABVD for 6 months
    • Chemotherapy after relapse
      • Preconditioning ICE chemotherapy
    • Radiation
    • Stem cell transplant


Advice that I always share with folks is just stay as positive as you can. Certainly there are going to be really hard days, but try to find the silver linings and the simple pleasures.

Just take one day at a time. As much as you can, stay in the present moment. Very much easier said than done, but it’ll help you stay grounded.

Lauren C.

Diagnosis

What were your first symptoms

My first symptoms were itchy skin and an enlarged lymph node. My belly itched, my arms itched, everything itched so much it motivated me to go to a dermatologist’s office.

It was kind of unbearable and really distracted me at work. At the appointment I mentioned I felt a lump over my collar bone that was getting bigger, so I asked her to check that out as well.

»MORE: Hodgkin’s lymphoma patients share common first symptoms

First visit to the doctor

When I was at the dermatologist, she just physically examined the enlarged lymph node. I didn’t even know that’s what it was at the time.

She had told me that she remembered the day in medical school when they had told her if someone young comes in with super itchy skin, not to discount them immediately or to think that it’s maybe just eczema –

Itchy skin is a symptom of Hodgkin lymphoma, especially in the younger population.

She recommended that I go see a general practitioner; she called me twice the following week to make sure that happened. I went to a general practitioner and that’s where I got chest X-ray and blood work.

The chest X-ray right away showed a mass in the chest as well as the blood work an elevated sed rate.

How long did it take to get the results back

It was pretty much the next day. It was either one or two days.

Getting the diagnosis

From the general practitioner, I went to an ENT doctor, who then recommended that I go and see a head and neck surgeon who did a needle biopsy.

It was from the needle biopsy that they were able to confirm the Hodgkin lymphoma. To stage it and know exactly what type, I had nodular sclerosis, they did a tissue biopsy.

It showed that the Reed-Sternberg cells were there and that’s how they’re classified. That’s how I found out, from the needle biopsy and the tissue biopsy.

Processing the cancer diagnosis

I was just about a year-and-a-half out of college and I was totally devastated.

I had led a healthy lifestyle and just didn’t see it coming. I don’t think most people do, especially when you’re that young.

I remember my mom was with me at the head and neck surgeon’s office. I kind of collapsed in her arms and told her that I didn’t want to die. I think that really was my biggest fear, that I felt like I had so much life to live.

Did you get a second opinion

I did. I went to Memorial Sloan Kettering to get a second opinion and they recommended the same treatment protocol.

Luckily, it’s just pretty standard course of treatment that people recommend at least at that time. So six months of chemotherapy, 12 treatments of ABVD chemotherapy.

At the time, Memorial Sloan Kettering didn’t take my insurance, so I went to a private oncologist who had been there for 17 years and had left somewhat recently to start his own practice. I felt really grateful to be somewhere where I was in really good hands.

Treatment

Did you get your treatment through your private oncologist

I did. I feel so grateful for that because he was the one who administered all my chemotherapy, which is very rare.

Usually it’s a chemo nurse but he was the one who did all my treatments. I would go get chemotherapy and then go to work after.

Treatment schedule

The first time was the six months of chemotherapy, 12 treatments of ABVD, and that was from January through June of 2008. I was luckily able to still work full time.

I would get my chemo every other week Thursday mornings and then I’d be off to work. I would take every other Monday off just because I was on the steroid high and then it would come crashing down.

I was able to work, so I felt grateful for that.

Was there anything you wish you had known at this point?

I think the biggest thing was that I wanted to know I wasn’t alone. That was one of my first questions: who can I talk to and who’s been through this?

Chemotherapy

How was ABVD chemotherapy

With the chemotherapy, I definitely had nausea, fatigue, I lost my hair. Those were the biggest ones. It kind of impacted my day to day.

Luckily I was able to still work but looking back, socially there were different things I did. I had just moved into New York with two roommates and I was so excited to take on the city and enjoy all that it has to offer. At the time I had to rest a lot, so it impacted me in that way.

How did you deal with the side effects

Just trying to be patient and kind to myself.

I surrounded myself with people who were really positive. It was hard though, especially losing my hair.

I was pretty self conscious about that and just wanted things to go back to how they were before.

I felt like I was missing out, but I dealt with it by surrounding myself with really good people – friends, family.

Through this experience the power of community was shown to me in so many different ways.

Relapse

What happened after your first round of treatment

I was declared in remission that summer. I was in remission for six months.

I trained for my first half marathon. A few friends of mine decided to fundraise for Leukemia and Lymphoma Society and run a full marathon. They inspired me to run a half marathon. I signed up for a half marathon and completed it.

The weekend of the race I actually felt the lump on my collar come back. I ran the Disney World half marathon and I had a huge group of friends that flew down for it and it was so special.

But that weekend I was pretty sure the cancer had returned and a PET scan confirmed it the following week.

When I learned that I relapsed, kind of crazy enough, I had started working at Memorial Sloan Kettering Cancer Center in the development office in fundraising and event planning. I had just started a new role there three months prior and I actually never even mentioned I had cancer.

During my interview I wore a wig. I wanted to be hired for myself, my skills, and talent. At this time of year I also didn’t think it would come back.

It’s not all that common to relapse.

I mean it happens certainly but I thought everything was behind me. Unfortunately, it came back and I had to leave work for six months because treatment the second time around was a lot more intense.

Processing the relapse

So devastated. My dad was with me and I had always kept this little notebook where I took all my notes when I had different doctors appointments.

I turned the page of my book and I just wrote ‘Round 2’ and I was ready to go.

There’s just no choice. I felt very grateful that I’m in one of the best cities for healthcare in the world and the fact that I was actually working at Memorial Sloan Kettering as an employee and in the best hands possible, truly.

I was obviously devastated and so much more scared the second time because the fact that it had come back was really scary. I tried to stay as positive as I could. There are certainly hard days and hard weeks.

Second Line Treatment

What was your treatment the second time

I had two preconditioning chemotherapies. They called it  ICE. I had two rounds of those, so I was in-patient for three days each during that.

Then I had a scan and all was looking really good, so they were able to move forward with the protocol.

Describe the ICE chemo

I had two rounds of the preconditioning chemotherapy, ICE, and I was in the hospital for three days each for that. Then in the midst of my hospital stay, I started my stay during my second week of radiation.

It was more intense that second week. Then I started my five days of high dose chemotherapy. That’s when you’re just on the chemotherapy continuously at a really high dose. Then you have a day of rest and then they give you the stem cells back.

What were the chemo side effects

High fevers, throat sores, lost my hair again, and extreme fatigue.

The miracle of the day was getting out of bed and maybe showering, so I was really quite knocked down.

What was radiation like

I had two weeks radiation. It was tiring. Very quick. I have six radiation tattoos on me, four in the front and one on each side.

The process to get it set up is pretty elaborate and so specific. That’s why you have to have the tattoos, because it’s so targeted. It’s really quick. You’re in their for just a couple of minutes and I went twice a day.

I was tired, but it was like a cumulative effect. Often times folks have radiation for five or six weeks, and that’s really pretty rigorous. But for me, it was just the two weeks and there’s also the fact that it was not too far after the ice chemotherapies.

Prep for stem cell transplant

I had my stem cells collected and then I had two weeks of radiation, high dose chemotherapy, and then the stem cell transplant.

I was in isolation for almost six weeks in Memorial Sloan Kettering on M8, the transplant floor. Then I went back to work in August.

Describe the actual stem cell transplant

I had an autologous stem cell transplant and that’s when they take the stem cells from your bone marrow. Stem cells are blood cells that haven’t decided what they want to be yet, they might be red blood cells, white blood cells, or platelets. That is very important in a disease.

Luckily, my cancer was not in my bone marrow. Often times, you will hear people need donors and that’s an allogeneic stem cell transplant. Because the cancer was not in my bone marrow, I was able to have my own stem cells transplanted.

I had a collection over a couple days and then from there they freeze them. When you hear the word transplant you think of lung transplant or heart transplant and it sounds super scary.

All they did was through a chest catheter where I had the chemotherapy coming in and any blood transfusions, that’s where the stem cell transplant happened.

They essentially had a vial of my stem cells and they were pushed back in through that chest catheter.

How was your experience with the stem cell transplant

Pretty uneventful actually.

It was a monumental day. It’s considered my second birthday, and it’s the day you are given a second chance at life.

So it has a lot of meaning, certainly, but on the day of it was pretty uneventful. They brought them in on the ice and there it was and in the stem cells went.

It was very quick to be honest. It was a very quick procedure. I don’t even think you could call it a procedure.

Quality of Life

How was your experience with hair loss

It was expected so I can’t say that I was super shocked that it happened. They had told me that I’d likely lose my hair. It was so hard just because you really look sick.

I felt like a shell of myself, but I did have a wig the first time around, and that definitely helped me feel a sense of normalcy.

I think the biggest thing was that I didn’t want to draw attention to myself or have people feel bad for me. I just wanted to continue on with life and keep bringing it back to that sense of normalcy.

My hair grew back fairly quickly. I just ended up rocking the hair that came back in – I never wore the wig again.

Were there any big surprises during treatment

I was so surprised that the cancer came back. I felt like it was behind me and I was excited to move on, so that was definitely surprising. I was grateful that I was able to preserve my fertility.

That was something I went through right before treatment the second time. I was advised to freeze my eggs, so that was something I went ahead and did.

Those pieces of it were so important because a lot of times folks don’t have the time or they’re not as informed. That was something that I would say surprised me because at 24, having a family was not on my radar yet. I also wasn’t dating anyone at the time so it was kind of hard.

Fertility preservation

Emotionally, it was something I wasn’t even thinking of at all. I was a little frustrated in general that I had to even think about that.

Physically you’re giving yourself all these hormone drugs to stimulate egg production. I didn’t feel all that great. I was staying hopeful but I was able to retrieve 24 eggs, and they’re frozen still.

The toughest times during treatment

When I was in the hospital, I struggled with high fevers, I could barely swallow, I couldn’t even swallow my own saliva it was so painful.

I had severe throat sores so I was on a PCA pump, patient control, and a pain pump, so I would press the pain pump a lot, every 7 minutes. We would set a timer so I would get the most pain medicine that I could. It was a tough go there for sure.

When I had the transplant, they basically bring you to the brink of death. Your blood counts are at zero.

Then slowly they start to rebuild. I needed several blood transfusions during that time too.

It just was so tough. My mom stayed with me almost every single night in the hospital so she was my sidekick. I just got through it one day at a time.

I think just feeling so terrible that I wasn’t able to do much. Everyone knows when you’re sick, knocked out by the flu or whatever, it’s so debilitating. It’s hard to do your regular day to day thing, even your fun magical adventure things – that was really hard for me.

I’m a super active person, I love to squeeze the juice out of life everyday, doing so many things. But I just did not physically have the energy at all.

I was physically and mentally so knocked out and exhausted.

What helped you the most during your low moments

Community. My support system was amazing.

My family and my friends, they’re the ones that really lifted me up. I remember the summer I was recovering from the transplant.

I don’t think you’re supposed to fly a couple months after the transplant but I was able to get the okay from my doctor.

It was about 90 days. That was the biggest sort of milestone. You have another PET scan 90 days post-transplant.

That’s also a very significant period of when potentially they can see the transplant not working, so those 90 days post transplant is a big milestone.

I remember I was visiting a friend, she’s in chiropractic school. I was so excited I could get on a plane and visit my girlfriend from college and just have a great weekend.

I think just being around people really lifts me up. I love music, I love reading, and those were things that really helped.

Were there any moments where you had to advocate for yourself?

In the sense of always asking questions. The treatment protocols can be really overwhelming, so just wanting to have a good sense of what was happening when, how, and little bit of the why. It’s a little bit hard for them to fully explain the why.

Nothing stands out really in particular but I’d say just overall feeling empowered by asking questions, whether it be about timing or side effects from the treatments.

How important is it to have caregivers

It’s so important to have caregivers. I think just going through something like this physically and mentally is really taxing. It’s overwhelming and information overload.

When you get in that doctors office, I always made sure I had someone with me, I had my list of questions, and my awesome little notebook that I kept.

It was so important to have that extra set of ears and eyes on everything. They may fill in things you maybe forgot when you were talking or maybe what’s happened since last appointment or ask questions that you might not think of right on the spot.

It’s just another person who is advocating for you and also caring for you.

Recovering after treatment

I celebrated my 25th birthday in the hospital and I moved home. I grew up about an hour north of the city, so I had somewhere to go. I was close to the hospital for any issues and any follow-up appointments which I did have a lot of.

I was able to recover at my parents’ house. It’s difficult when some folks might not have to that and you really have to rely on others, especially when you’re recovering from the stem cell transplant.

You’re really quite debilitated and you can’t eat out, you can’t really be out in public because your immune system is so compromised. I had to get all my vaccinations again. It’s basically like you’re born again.

You really have to be mindful of infections. You really have to rely on other people to do a lot of things for you that you normally would be able to do for yourself.

Were you able to ask other people for support

I had my sister, too, so she was wonderful. Actually crazy enough that the time I was in the hospital, she was nine months pregnant and gave birth to my first nephew. He luckily was born a couple days after I got out of the hospital.

I remember being like, “I need to be there for this, I can’t miss it.” I just felt so trapped. Luckily, I got out and I was probably not supposed to be in the hospital to see him, but I did short, quick visits.

We got stronger that summer together and my sister was out on maternity leave; it was just such a special time.

My sister organized a blood drive for me. I mentioned that I needed blood transfusions, so blood cells and platelets, which are in that category.

She motivated folks to come to Memorial Sloan Kettering, their blood donor room, and donate blood for me. Even if it wasn’t necessarily used directly for me, it was used for other patients in the hospital, because they only have a certain shelf length. It never went to waste.

My friends’ ability to show up and support me, whether it be phone calls, emails, or little packages. I remember at the time there was a program called “Spirit Jump,” it doesn’t exist anymore, but you submit your story or someone can submit int on your behalf, and then it’s shared with this community.

I got letters and little gifts from people all over the country. They said “We’re cheering you on! We can’t believe you just ran a half marathon! You’re such a rockstar and you have more cheerleaders than you know!”

I got these really kind notes from all over the world, so that’s something that I’ve kept with me.

Any time someone that I know or friends of friends or family friends, if they’re going through a hard time, that’s one of the first things I ask. If there’s an address, I try to send a note of encouragement.

»VIDEO: Cancer patients share gift ideas for a loved one going through treatment

Did you work through treatment your second time around?

No. The second time I left work for six months. I was out from February to August.

Financial toxicity: paying for cancer treatment

Luckily, the first time around, I had really good insurance coverage. The second time around as well, since I was an employee at Memorial Sloan Kettering, I was treated for free. That was huge.

During the fertility preservation, I was lucky enough to receive a grant from an organization called Fertile Hope. They have been since acquired by Livestrong but that was a huge piece of my ability to cover the fertility preservation – the treatments and the collection.

Was there anything you wish you had known about the financial process

I think that just in general with the healthcare system, you never know when you’re going to pay for anything. The claims get submitted and you have no idea how much is really going to get covered.

It’s pretty nuts because when do you go into somewhere not knowing what you’re going to pay? We go into restaurants and you know what you’re paying for a meal, or you go to a store and you buy something, you know how much it costs.

It’s so odd that we go in to appointments and tests and different things, and we actually a lot of the time have no idea how much will be covered. I think that’s an issue with the healthcare system and it’s really disappointing.

I don’t know if there’s much to know. Certainly if you know you’re going for an office visit, you’re going to pay a copay, but I’m talking about different tests and stuff like that which aren’t fully covered.

Sometimes you don’t even know what percentage will be covered and then you get the bill in the mail. I think the lack of transparency and information sharing prior to moving forward with whatever it is, is really strange and I’m hopeful that maybe it’ll change over time.

What is the new ‘normal’ following cancer

It took a while to recover from the stem cell transplant. I was able to get back to work, but physically I was definitely pretty run down. I eased back into exercise and yoga and running. Running was such an important part of my life, so I really wanted to get back to that.

About a year after my transplant, I started classes at a studio and I started taking barre classes. That’s like core strength classes. You use your whole body weight to create strength.

I fell in love with the method, it really changed my life so much that I started teaching the method. Fitness had become a huge part of my recovery and I’ve run seven half marathons and two full marathons fundraising cancer research.

I ran my two marathons with Fred’s Team. Fred’s Team is Memorial Sloan Kettering’s athletic endurance program and you can actually have your funds allocated to any area of cancer research that you choose.

So I chose lymphoma one year and I chose the survivorship clinic and program at the hospital.

My hope was just to really give back. I’ve been involved here for 9 years at the hospital. I work with patients and their families listening, giving any guidance and insight that I can, and that’s been really meaningful. I also speak at nurse orientations and new employee orientations, sharing my story from a patient perspective.

That’s been so meaningful for me to just stay connected to everything that I had gone through and give people this beacon of hope.

My story is one of resiliency and we face so many different life challenges, mine happened to be cancer but I think that any difficult challenge we face, we have the power and strength to overcome it.

Message for other patients

Advice that I always share with folks is just stay as positive as you can. Certainly there are going to be really hard days, but try to find the silver linings and the simple pleasures.

Just take one day at a time. As much as you can, stay in the present moment. Very much easier said than done, but it’ll help you stay grounded.

Surround yourself with people who are positive, who lift you up, and who are supportive.


Thank you for sharing your story, Lauren!

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Hodgkin’s Lymphoma Stories

Hodgkin’s Lymphoma Stories: Nodular Sclerosis, Stage 1B | Madi’s Story

Madi J., Hodgkin's, Stage 1B



Cancer details: Most common and most treatable form of Hodgkin lymphoma
1st Symptoms:
Shortness of breath
Treatment:
3 rounds (6 infusions) of ABVD chemo
Hodgkin’s Lymphoma Stories: Classical, Stage 2 | Danielle’s Patient Story

Danielle D., Hodgkin's, Stage 2



Cancer details: Diagnosed at age 25
1st Symptoms: Swollen lump on right side of neck/chest area, continued to grow
Treatment: ABVD chemotherapy (3 cycles = 6 infusions)
Hodgkin’s Lymphoma Stories: Classical, Stage 2 | Lani’s Patient Story

Lani S., Hodgkin's, Stage 2



Cancer details: Tumor pressing on heart
1st Symptoms: Appendicitis led to CT scan that found tumor
Treatment: ABVD chemotherapy, 7 cycles
Hodgkin’s Lymphoma Stories: Stage 2A | Jason’s Story

Jason F., Hodgkin's, Stage 2A



Cancer details: Diagnosed at 39
1st Symptoms: Itchy legs, bloated face and “upper trunk,” slow-healing wounds, asthma worsened
Treatment: 6 cycles (12 infusion) ABVD chemo, 18 radiation therapy sessions
Hodgkin’s Lymphoma Stories: Stage 2A, Adolescent (AYA) Cancer | Logan’s Patient Story

Logan A., Hodgkin's, Stage 2A



Cancer details: Diagnosed at age 15
1st Symptoms:
Lump in neck & fatigue
Treatment:
4 cycles of ABVE-PC chemo
Hodgkin’s Lymphoma Stories: Classical, Stage 2A | Helicon’s Patient Story

Helicon K., Hodgkin's, Stage 2A



Cancer details: Found lymphoma cells in adenoid tissue
1st Symptoms: Difficulty breathing with blockage in nose, surgery to remove tissue resulted in discovery of Hodgkin lymphoma cells
Treatment: ABVD chemotherapy (4 cycles), radiation (20 sessions)
Hodgkin’s Lymphoma Stories: Stage 2A, Relapse, Nodular Sclerosis | Lauren’s Patient Story

Lauren C., Hodgkin's, Stage 2A



Cancer details: Diagnosed at 23 years old with nodular sclerosis, relapsed after 6 months of 1st-line treatment
1st Symptoms: Itchy body, enlarged lymph node over collar bone
Treatment: ABVD chemotherapy and ICE, radiation, and stem cell transplant for relapse
Hodgkin’s Lymphoma Stories: Classical, Stage 2A, AYA Cancer | Wade’s Patient Story

Wade W., Hodgkin's, Stage 2A



Cancer details: Diagnosed at 18 years old
1st Symptoms: Enlarged lymph nodes (around neck), diagnosed at 18 years old
Treatment: ABVD chemotherapy (2 cycles), AVD chemotherapy (4 cycles)
Hodgkin’s Lymphoma Stories: Stage 2B, Relapse, Transplant| Moe’s Patient Story

Moe C., Hodgkin's, 2B, Relapse



Cancer details: Diagnosed at 19, relapsed before remission
1st Symptoms: Fatigue, weight loss, night sweats
Treatment: ABVD chemo, DHAP chemo, MINE-R chemo, splenectomy, autologous bone marrow transplant
Hodgkin’s Lymphoma Stories: Stage 2BX, Relapse | Fabiola’s Patient Story

Fabiola L., Hodgkin's, Stage 2BX



Cancer details: Stage 2 with bulky disease, relapsed after 1st chemo. Remission after 2nd chemo & bone marrow transplant
1st Symptoms: Shortness of breath, dry cough, fatigue
Treatment: ABVD chemo (6 cycles), IGEV chemo, bone marrow transplant, BEAM chemo, brentuximab
Hodgkin’s Lymphoma Stories: Classical, Stage 2BX | Stephanie’s Story

Stephanie O., Hodgkin's, Stage 2B



Cancer details: Stage 2 with bulky disease
1st Symptoms: Shortness of breath, dry cough
Treatment: Stanford V chemotherapy (12 weeks, 1 infusion each week), radiation (20 days)
Hodgkin’s Lymphoma Stories: Stage 2B | The Patient Story

Charlie B., Hodgkin's, Stage 2B



Cancer details: Diagnosed at 32
1st Symptoms: Lump in neck
Treatment: ABVD chemotherapy
Hodgkin’s Lymphoma Stories: Classical, Stage 2B | Katee’s Patient Story

Katee P., Hodgkin, Stage 2B



Cancer details: Accidentally found in x-ray after months of symptoms
1st Symptoms: Night sweats, fatigue, extreme itchiness, persistent cough
Treatment: Clinical trial; AAVD chemo, immunotherapy
Hodgkin’s Lymphoma Stories: Stage 2BX | Mara’s Patient Story

Mara T., Stage 2BX (Bulky)



1st Symptoms: Shortness of breath, back pains, daily migraines
Treatment: 3 rounds of ABVD, 3 rounds AVD, Radiation
Topics: Self-advocacy, mental health
Hodgkin’s Lymphoma Stories: Classical, Stage 2X| Jade’s Patient Story

Jade B., Hodgkin, Stage 2X



Cancer details: Diagnosed at 21 years old
1st Symptoms: Itchy legs and feet
Treatment: ABVD chemotherapy (4 treatments), AVD (remaining treatments)
Hodgkin’s Lymphoma Stories: Classical, Stage 3, Relapse | Tylere’s Story

Tylere P., Hodgkin, Stage 3



Cancer details: Mother is a nurse practitioner; suspected cancer
1st Symptoms: Swollen lymph nodes in neck
Treatment: Clinical trial; Chemotherapy, BMT
Hodgkin’s Lymphoma Stories: Stage 3A, Refractory to Gray Zone Lymphoma | Kayla’s Story

Kayla T., Hodgkin's, Stage 3A



Cancer details: Possibly misdiagnosed the first time; later diagnosed as grey zone lymphoma
1st Symptoms: Pulled muscle in chest
Treatment: ABVD chemo, radiation, high-dose chemo, stem cell transplant
Hodgkin’s Lymphoma Stories: Stage 3B | Erica’s Patient Story

Erica H., Hodgkin's, Stage 3B



Cancer details: Staged at 3B
1st Symptoms: Intense itchiness, fatigue, night sweats, weight loss
Treatment:ABVD chemotherapy, 6 cycles (12 infusions)
Hodgkin’s Lymphoma Stories: Stage 4 | Nicole’s Patient Story

Nicole M., Hodgkin's, Stage 4



Cancer details: Staged 2 then 4 after second opinion
1st Symptoms: Extreme fatigue, persistent itching on lower half of legs
Treatment: 6 cycles (12 infusions) chemo, ABVD then AVD (dropped bleomycin)
Hodgkin’s Lymphoma Stories: Stage 4, Classical | CC’s Story

CC W., Hodgkin's, Stage 4



Cancer details: Diagnosed at 29, misdiagnosed as mono
1st Symptoms: Achiness, extreme fatigue, reactive rash on chest and neck. Later: chills, night sweats
Treatment: ABVD chemotherapy (6 cycles)
Hodgkin’s Lymphoma Stories: Classical, Nodular Sclerosis, Stage 4A | Lia’s Story

Lia S., Nodular Sclerosis, Stage 4A



Cancer details: Most common and most treatable form of Hodgkin's lymphoma
1st Symptoms:
Extreme lower back pain
Treatment:
ABVD chemotherapy
Hodgkin’s Lymphoma Stories: Stage 4B | Ava’s Patient Story

Ava O., Stage 4B



1st Symptoms: Trouble digesting, weak immune system, raised glands, night sweats, chest pain, extreme fatigue
Treatment: 6 cycles of ABVD chemotherapy
Topics: Emotional grieving, mental health, letting go
Hodgkin’s Lymphoma Diagnosis Stories| The Patient Story

Delishea A., Hodgkin's, Stage 4B



1st Symptoms: Extreme itchiness and dry cough
Treatment: 6 cycles of chemo, radiation, Adcetris
Topics: Finding community & support, self-advocacy
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CAR T-Cell Therapy Diffuse Large B-Cell (DLBCL) Non-Hodgkin Lymphoma Relapsed and Refractory Stanford Treatments

CAR T-Cell Therapy Stories: Refractory Non-Hodgkin Lymphoma, Diffuse Large B-Cell Lymphoma

CAR T-Cell Therapy Stories
Refractory Non-Hodgkin Lymphoma
Clinical Trial
Diffuse Large B-Cell Lymphoma (DLBCL)
Shahzad’s Story

Here’s a story of successful CAR T-cell therapy response for a Shahzad, who’d been diagnosed with stage IV Non-Hodgkin Lymphoma (Diffuse Large B-Cell) and given three months to live.

That’s when his wife, Nicole, championed for him to get this new line of treatment. He was actually the first to undergo a commercial CAR-T drug at Stanford Medical Center. Here’s the incredible story as told by Nicole.



First-Line Treatment

Initial diagnosis

Shahzad was stage IV with non-Hodgkin Lymphoma Diffuse Large B-Cell by the time he needed CAR-T.

How did first line treatment end

Due to an initial misdiagnosis of Mantle Cell Blastoid, Shahzad underwent R+B (Rituximab, Bendamustine) and then R-ICE (Rituximab, Ifosfamide, Carboplatin, Etoposide).

When he was properly diagnosed, he underwent dose-adjusted R-EPOCH chemotherapy but miscommunication led to three cycles of that chemo instead of six.

He relapsed and we were told by doctors that there was nothing that could be done. He was given three months to live.

How did you know about CAR T-Cell therapy

My son and I attended the Leukemia and Lymphoma Society Conference in San Francisco. The breakout group we chose was for diffuse large B-cell.

The presenter was Dr. Babis Andreadis of UCSF. He could have chosen any subject to present. Lucky for us, he chose CAR T-cell therapy.

I remember the room had about 30 people and there was silence, really no reaction. I couldn’t understand why. The material was presented in layman’s terms, easy to understand. But I’m not sure why no one seemed interested. 

I was blown away! This is the solution for my husband. I just had that gut feeling, that moment of light and insight.

CAR T-Cell Therapy Approval

The start of research

He said it was still in clinical trials and fairly new, so it would be another two years before the Food and Drug Administration (FDA) would approve it. Two years is a very long time to a stage 4 cancer patient.

From that moment on, I began researching. I taught myself about clinical trials and what to look for: inclusions and exclusions.

Insurance

Insurance didn’t seem too committed to covering it, so I had to search for financial assistance which was difficult because our 2016 income disqualified us on paper.

But I continued to follow the progress. Kymriah, the Novartis CAR T-cell therapy for pediatrics acute lymphoblastic leukemia (ALL) was approved in August 2017, several months earlier than expected.

Then an independent committee voted unanimously to recommend approval to the FDA for Yescarta (commercial CAR T-cell drug).

The FDA approved Yescarta on October 18th. On October 19, Shahzad had a biopsy because doctors could not agree on the PET scan images. I remember feeling conflicted. Of course I didn’t want him to have disease.

Or did I? In order to qualify for Yescarta, you must have some disease for the T-cells to work. I felt relieved, because I knew that regardless of the outcome, we would be okay.

I never wanted the stem cell transplant. My gut just felt it was not in his best interest. The following week when the doc told me, “The biopsy was positive. He is now considered relapsed and refractory, disqualified for stem cell transplant, out of options, and has three months to live.”

I piped in with, “What about CAR T-cell therapy?” She said that he’s an excellent candidate for CAR T-cell but her facility won’t be ready until February, and he doesn’t have until February.

That is when I turned to Kite to find out who nearby is ready. I wrote to Dr. Miklos at Stanford. He said he had over a hundred referrals waiting, but given my husband’s timeline, he put Shahzad at the top of the list. 

How did you get him approved for CAR T-cell therapy

Once I knew that Stanford was a viable option, I began a campaign strategy in my head with two objectives:

  1. I had to gather what I thought would be compelling information for the insurance.
  2. I had to find a way to appeal on a personal level.

1. Compelling Information: I obtained Letter of Statement from three separate oncologists, all of whom had evaluated Shahzad, stating that he was indeed a qualified candidate for this treatment, that he only had three months to live, and that this was his only option for survival.

I printed off the Yescarta brochure so there was clear understanding of what the therapy involved. And I obtained literature that demonstrated a cost savings of Yescarta versus an allogeneic stem cell transplant with graft-versus-host disease (GvHD) life long side effects.

Now they can’t argue the price. 

2. Personal Appeal: I called our case manager, whom I had never seen, only spoken to over the phone. I asked for a face-to-face meeting because what I needed to discuss was too important to be discussed over the phone. She agreed. 

I prepared a simple timeline from symptoms, diagnosis, treatments, to now. I reminded her where and what he’s been through, where he stands now (with three months to live), and [that] there is one option left. Can we do this?

She said yes to Yescarta.

Back-up plan

Had she said no, I was prepared to make this public. I had obtained the names and phone numbers and email of each of the Board of Trustees. I was going to make flyers and postcards and social media pleas to flood their voicemails and emails!

I was going to send them each a party invitation, asking them if they had the chance to save someone’s life, would they? I was going to contact local media and stage picket lines. I was not taking no for an answer.

I was going to fight, fight, fight, and even if they didn’t change their mind, the negative publicity does not do a local union good. Thankfully, Stanford’s finance department and our insurance were able to come to a financial agreement very quickly.

There are different “exceptions” for different kinds of CAR T-cell therapy drugs

CAR T-cell is the therapy, immunotherapy, which targets CD19 protein. Shahzad had that but he also was positive for CD5. 

Clinical trials have a huge list of inclusions, what is required to be accepted into the trial, as well as a huge list of exclusions, which disqualify you from a trial.

During the clinical trial phase, since Shahzad was predominantly CD19 positive qualified him for the trial. The fact that he was also CD5 positive excluded him from trial, because the trial was only targeting CD19. The CD5 was an unknown. 

However, when the FDA approved Kite’s Yescarta as a third line therapy, they did not make CD5 positive an exclusion. That means a patient mostly CD19 positive, even with a CD5 positive, made him qualified to accept the commercial brand. 

Questions for doctors about CAR T-cell therapy after he was approved

I had been following CAR T-cell for the year. The only question I had to the doctors were:

  1. If CAR T fails, how will we know if CD5 was a factor? A blood test would reveal what protein(s) remain.
  2. I know there was a death during this trial. What caused it and is it a risk or what steps have you taken to prevent it?

The death was caused by cerebral edema, which they did not expect as a severe adverse side affect. Now they know how to recognize the signs and bring in the neurologist immediately, so it will never get to that stage again. 

What were the biggest hurdles

At that point, the insurance approved the consultation, which was done in November. That bought a little more time for the rest of the contract to be negotiated.

One site gave me a little trouble about getting records sent over quickly, but I just went up the chain until I got someone compassionate and empowered to help me.

There was an error made on the initial contract which I found out about as I stayed on top of the timeline. I knew when something fell through the cracks and just helped to keep it moving along.

Once the contract was finalized, Stanford enrolled Shahzad with [the pharmaceutical company] and it makes the schedule, based on lab production. We were lucky that it was so soon after FDA approval and not many sites were certified, so the calendar was pretty open for us.

As a result, Shahzad was the first patient to be treated with Yescarta at Stanford. Compared to everything else, the hurdles were really minor. 

CAR T-Cell Treatment & Results

What happens during CAR T-cell therapy

Once [the pharma company] makes the calendar, the first part of the process is called leukapheresis. It is the process in which the T-cells are extracted from the body and separated from the rest of the blood.

It is much like collection for a stem cell transplant. One tube goes from the body into an ATM looking machine where it gets separated and the T-cells are collected. Another tube takes the remaining parts of the blood from the machine and sends it back into the body. That process takes about four hours.

As soon as the T-cells are collected, staff and a [drug company] rep triple-verify all of the information (very comforting to know his T-cells won’t get mixed up with someone else’s in the lab by mistake!). Once that is done, the bag is placed into this ultra modern Styrofoam cooler and sealed.

The [drug company] rep immediately takes it to the airport so it can be sent to the lab immediately. The T-cells are frozen, so it is time- and temperature-sensitive. The T-cells spend about 17 days in the lab (including travel time).

Shahzad went back to work for two weeks. On December 21, he was taken into surgery to have his two-year old internal port removed and replaced with an external Hickman line.

Then on December 22, he began the preconditioning chemo known as Cy/Flu for short. It is done outpatient and took a few hours each day, for three consecutive days. Everyone responds differently. He had some fatigue and nausea and vomiting.

He had Christmas day free to recover. On December 26th he was admitted to the hospital and prepped. On December 27th, that cooler was again retrieved at the airport and brought to the hospital by the [drug company] rep. Again, everything was triple-verified before removing the bag from the cooler.

It really was quite the production!  At that point, we were advised that it is common to smell an odor once the T-cells are infused. Some smell creamed corn, some smell tomato soup.

The bag contents are clear (T-cells are microscopic) and frankly, it looked empty. I joked that this empty bag costs $373,000! The tubes were hooked up and in went the T-cells. It was actually very anti-climatic.

Was there physical pain during CAR T-cell therapy

There was absolutely no pain involved for him, whatsoever. The only pain he ever had was in the beginning when the lymphoma decided to go into his foot bone and he couldn’t walk.

Compared to the harsh chemo he went through, and what a stem cell transplant has been described as, this was the easiest piece of cake ever. He was ready to return to work in five weeks.

What were the side effects

Typically, nothing happens for the first three days but that’s an average and everyone is different. There are two major side effect potentials: Cytokine Release Syndrome (CRS) also known as the Storm.

This is where the T-cells are working, but the body is kind of like whoa, what’s going on? One may develop flu-like symptoms including weakness, fever, etc. 

The other is neurotoxicity, where the cytokines mess with the brain. This can cause confusion, loss of memory, seizures, or cerebral edema. They can be very serious, but 20% in trial never experienced any.

The good news is it is temporary, patients are very closely monitored, and changes are addressed and treated immediately. For example, if neurotoxicity begins, the neurologist is engaged immediately.

They may administer a steroid or run a CT scan to stop the symptoms. In most cases, a patient is kept admitted for seven days, longer if needed.

Once discharged, the patient must remain in the immediate area for 21 days for observations and daily blood counts. There are several medications prescribed.

Some start prior to infusion, some start at infusion, some end at post-30 days, some may start at post-30 days, and one is for a minimum of six months, Acyclovir, which is the only one Shahzad was put on.

Some take with food, some on empty stomach. You really must be very organized to manage this. There are also several “as needed” but he never needed them. On the days that he did not visit the outpatient clinic, he did need to flush his PICC line with Heparin.

Low white blood counts and low potassium are common after infusion, and are treated. There will be a PET scan sometime around Day +30. In many cases with Yescarta, patients are seeing complete metabolic response.

Were there any surprises

The only part that was difficult was when he had an episode that was originally thought to be a seizure. They did everything they told me would be done: brought in a neurologist, gave tocilizumab, ran a CT scan, etc.

It turned out not to be neurotoxicity, but for the hours that we thought it was, it was petrifying. I was warned and knew to expect it, but I don’t think there is anyway a human can really prepare for the emotions that come when actually seeing it happen. 

What do you wish you had known before CAR T-cell therapy began?

For me, nothing other than the emotions from the episode. Everything else went exactly as planned. I wouldn’t change it and have absolutely no regrets!

Quality of Life

“Be your own advocate”

You need to be on your own best advocate. You can’t rely on others to hand you information. You need to go out and look for it yourself. There are so many out there and free resources to help you.

Do your research. Learn as much as you can and question everything because people do make mistakes, even doctors and nurses. I would definitely suggest a second opinion to be 100% sure.

Each patient is different, each subtype is different, each experience is so different. You can’t compare yourself to a graph or statistics – it just doesn’t add up.

Did your husband work during CAR T-cell therapy

No, but he was ready for work five weeks later. Also, law prohibits a patient from driving for 60 days after infusion, so we waited until he could drive to return to work, but by then his counts were normal and healthy.

Lack of support

Dealing with friends who didn’t engage. It took me a really long time to understand why. Cancer isn’t contagious, so there was no physical risk.

They are not people who are “fair-weather friends,”  so why the lack of interest? I truly believe they haven’t encountered this type of illness in their life, so it’s just too painful to acknowledge it. I believe it’s merely self preservation. And I get it. 


Thank you for sharing your story, Shahzad!

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Non-Hodgkin Lymphoma Stories

Non-Hodgkin’s Lymphoma Stories: Diffuse Large B-Cell Lymphoma | The Patient Story

Nina L., Diffuse Large B-Cell (DLBCL), Stage 4



1st Symptoms: Hip and lower extremities pain, night sweats
Treatment: Chemotherapy R-CHOP
Lymphoma Diagnosis Stories | The Patient Story

Richard P., Relapsed/Refractory Follicular Lymphoma & DLBCL



1st Symptoms of relapse: Swelling in leg, leg edema Treatment:1st line - R-CHOP chemotherapy, 2nd line - clinical trial of venetoclax-selinexor
CAR T-Cell Therapy Stories: Refractory Non-Hodgkin Lymphoma, Diffuse Large B-Cell Lymphoma

Shahzad's CAR T Story



Cancer details: Refractory non-Hodgkin lymphoma, stage 4
1st Symptoms: Extreme fatigue
Treatment: R&B, R-ICE, R-EPOCH, CAR T-cell therapy (cell-based gene therapy)
FDA approved: October 2017
Non-Hodgkin’s Lymphoma Stories: Diffuse Large B-Cell & Burkitt Lymphoma, High-Grade B-Cell Lymphoma, Stage 4

Erin R., DLBCL & Burkitt Lymphoma, Stage 4



Cancer details: Characteristics of both subtypes
1st Symptoms: Lower abdominal pain, blood in stool, loss of appetite
Treatment: Chemotherapy (Part A: R-CHOP, HCVAD, Part B: Methotrexate, Rituxan, Cytarabine)
Non-Hodgkin’s Lymphoma Stories: Diffuse Large B-Cell (DLBCL), Stage 4

Emily G., Diffuse Large B-Cell (DLBCL), Stage 4



1st Symptoms: Pain in left knee
Treatment: R-CHOP chemo (6 cycles), high-dose methotrexate chemo (3 cycles)
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Categories
Acute Lymphoblastic Leukemia (ALL) Adriamycin (doxorubicin) blinatumomab (BLINCYTO) Clinical Trials cytokine storm Cytoxan (cyclophosphamide) Leukemia prednisone Radiation Therapy Relapsed and Refractory Side Effects Stem cell transplant vincristine

Leukemia Story: Acute Lymphoblastic Leukemia (ALL), Relapse | Casey’s Story

Casey’s Leukemia Story: Acute Lymphoblastic Leukemia (ALL), Relapse, Immunotherapy & Transplant

Casey’s life changed after her acute lymphoblastic leukemia (ALL) diagnosis and two relapses, undergoing many treatments: chemotherapy, immunotherapy, radiation, and a stem cell transplant.

In her story, the now-survivorship coach, shares how she navigated life with and after cancer, from losing her hair twice, advocating for herself as a patient, and the support that helped her the most. Thanks for sharing your story, Casey!

  • Name: Casey H.
  • Diagnosis: Adult acute lymphoblastic leukemia
  • Staging: N/A
  • 1st Symptoms:
    • Lump on throat
    • Extreme fatigue
    • Shortness of breath
    • Bruising easily
  • Treatment:
    • Chemotherapy
      • Vincristine, prednisone, cyclophosphamide, doxorubicin, and L-asparaginase for 8 weeks
    • Immunotherapy
      • Blinatumomab
        • “fanny pack” infusion
      • Izotunomab
        • Clinical trial
    • Radiation
      • Total body in preparation for the stem cell transplant
    • Stem Cell Transplant

Table Of Contents

Just breathe. It’s going to be okay. You and your body are so much more resilient and strong than you think. Your body can withstand so much and recover.

There is a whole other level you can dig deep and find that can get you through anything. You just have to be open to it.

You cannot get through it without digging really deep sometimes and knowing that you can get through it.

Casey H.

Diagnosis

What were your first symptoms

I found a lump on the side of my neck. I thought I was getting sick, so I didn’t really think much about it. I went to an ENT, and he gave me 10 days of antibiotics and told me to come back in two weeks.

I took the antibiotics, but they didn’t go away. There were about three nodules on each side.

From the time that I stopped taking the antibiotics to my doctor’s appointment on that Friday was about five days. During that time, I started to get really short of breath.

I normally go to work and walk up three flights of stairs and start working. I couldn’t hardly get up one. It took me 10 minutes to walk up the stairs.

I became really white and started bruising really easily. I would touch my hand to a counter and have a bruise. Then I started getting petechiae all over my body. They’re little clusters of red dots. I didn’t know what that was.

On that Friday I had my doctor’s appointment, my boss had pulled me into her office. She was like, “Are you okay? What is going on?” She thought my husband was beating me or I was hungover or something. I was telling everyone I was tired and had a doctor’s appointment.

How did you get diagnosed

When I got to the ENT, I could tell he knew something was wrong. He sent me over to an internist. He immediately took me in, and I knew that meant something was going on.

He had me walk around the office, and he couldn’t get a pulse ox reading. He didn’t understand what was going on. From that appointment, they sent me straight to the ER.

They told me I needed blood work and that was the fastest way to get it. They were concerned since it was Friday and might have had to wait over the weekend, so I went straight there.

They took my blood, and in the meantime, they gave me an x-ray because I was complaining about lower back pain. I was getting an X-ray and in that time, they said I needed a blood transfusion right then.

They didn’t explain anything to me so my husband and I asked them what was going on.

After they started ordering everything, the emergency room doctor came in and said, ‘We are 90% sure you have leukemia, but you need to get a bone marrow biopsy to confirm it.’

They said they couldn’t transfer me to the cancer treatment center I wound up getting my treatment from until I had another pint of blood and more platelets.

What happened when you heard the diagnosis

I looked at my husband kind of confused and said, “Wait a minute, what?” My brain could not grasp that concept. They handed my husband a pamphlet about acute lymphoblastic leukemia. He showed it to me, and my brain was just not computing what was happening.

It was so uncomfortable that I couldn’t really process what was happening. I was running on such little hemoglobin, so I wasn’t really functioning properly anyway.

Add in the shock, and it was very confusing.

You’re told what you’re going to be doing. You’re in such a deteriorated state, so you’re pretty much just like, “Okay. Is it gonna make me feel better?” You don’t think about what you’re about to do because you don’t really have much context for it.

The only time I had heard the words cancer were with older people. I just wasn’t familiar. It was never a thing I thought would be a possibility, so I hadn’t given it much thought. There was more shock than anything else.

»MORE: Patients share how they processed a cancer diagnosis

What were the next steps

When they did the bone marrow biopsy, they actually wound up doing three. When they pulled the first one out, it was so compacted that it looked like a white strip of plastic.

The attending physician looked and said it didn’t look right. He said, “Maybe I got bone instead of your marrow. I have to go again.”

They did another one, and it looked the same. He said the odds of him missing twice were super slim, and he wanted to do one more. I was so high on the drugs they gave me that it didn’t matter. The third one came out the same.

He came in later that day and said, ‘I’m so sorry we had to do that. It was your bone marrow. It was so far off from what it’s supposed to look like. It was compacted bone from the leukemia taking over.’

He apologized for having to do the biopsy three times, but said it confirmed the diagnosis and told me how we would proceed.

He pulled out this five-page protocol they were going to put me on and went through it. It was over a year and a half protocol, so you just go into survival mode and say, ‘Okay, what am I doing today?’

What was the bone marrow biopsy like

I’ve had more than 20 now. The first time, though, they gave me Dilaudid. I’d never been on anything that strong before, and I barely take Advil. I was high as a kite. I looked at my husband and said, “I completely understand why people do drugs now.”

After they give you the drugs, they also numb the actual area of extraction. People often say it’s the most painful part of the process, but for me it wasn’t.

It is painful, but it wasn’t as bad because I was so drugged up. It’s more painful the next day because there are no meds and there’s bruising on your back. 

You’re so heavily medicated that you don’t really feel a whole lot of pain, but it literally feels like they’re drilling into your back with a giant screwdriver.

The amount of pressure it puts on your lower back is suffocating to the point where you have to remember to breathe.

I had mine lying flat on my stomach, and the doctors were sweating when they were doing it, so you know it’s a lot of pressure. If they don’t pull out the bone marrow the right way, it can get stuck in your bone, and that is probably the worst part.

How did you break the news to loved ones

My husband was with me, and I had him tell my dad. I couldn’t say the words because I was scared and honestly a little ashamed at that time. I didn’t know where it was coming from and especially as a female, you tend to blame yourself.

I kept thinking, ‘What did I do wrong? Is there anything I could’ve done differently?’

I took on the responsibility that I created it – which isn’t how it works at all, but during that time I just couldn’t say the words to people. I had my husband do it for me.

»MORE: Breaking the news of a diagnosis to loved ones

Did you get a second opinion

I was in a weird spot where I trusted the hospital and the plan they came up with. Northwestern and the University of Chicago work really closely with each other. They share a lot of information and consult with each other on tough cases.

I was so degenerated that I don’t think I had time to get a second opinion, but the two hospitals were already talking to one another about it. Looking back, would I have gotten one? I don’t know.

Chemotherapy & CAR T-Cell Therapy

You had some complications with the chemo. What happened?

My regimen was six doses of Doxorubicin, five doses of Daunorubicin, seven of Cytarabine, three of Cyclophosphamide, 13 of Thioguanine, and seven PEG-L-asparaginase.

Unfortunately, I had a stroke and massive seizure as a complication of the PEG-L-asparaginase.

I remember looking at the side effects of the chemo and going, ‘Who has a stroke?’

Then I signed the paperwork and kept going. 

That left me temporarily paralyzed on my left side. I’d spent two weeks in the hospital at the Rehab Institute of Chicago to basically learn how to use my left side again enough to where they could discharge me.

In that two or three week time period, they did stop chemo for a little while, but then they put me back on. I was rehabbing and on chemo, and I did that for eight weeks.

It was a good thing because it really pushed me to see how resilient the body is and what it can come back from. It was very interesting in that regard.

I finished out the protocol in 2015, and seven weeks later, I relapsed. I went right back into the hospital for 60 days. During this time, they decided I was chemo-resistant.

What were the next steps after learning you were chemo-resistant

They had one immunotherapy drug at the time called blinatumomab. They wanted to give it a try. You get a fanny pack. It’s a 24-hour infusion for three days straight.

You go back to the hospital and they change it out. Then you normally would do that again, but within 24 hours of me starting that, I was right back in the hospital again.

It caused a cytokine storm. I basically had the flu but way worse. I was spiking fevers of 105, and they couldn’t break it for three days straight. Immunotherapy works different ways for different people because it’s about the way it interacts with your body.

A lot of people have different experiences than I did, but that was the negative side effect I had from that.

The initial side effect was extreme fatigue. I went home and had to bring a chair in our shower because I couldn’t stand long enough to bathe myself. That was what made us go to the hospital. We knew something wasn’t okay because I was way too fatigued. Then I started spiking the fevers.

I had to beg them not to send me to the ICU. I had to get the immunotherapy out of my system, and then I started to feel better. 

What happened after chemo and CAR T therapy both failed

At the time, Northwestern was working on CAR T-cell therapy. It was a clinical trial, and that’s what we went for next.

To be on a clinical trial, you get tested for everything under the sun. They take your own immune system and engineer it to fight the cancer.

I started to do all the testing required for the trial along with having my own stem cells harvested. I had just had my stem cells harvested and was going to start my clinical trial the next week.

Unfortunately, during that week while my cells were at the lab, two people in the same clinical trial passed away. The drug manufacturer shut down the clinical trial, so at this point I had nothing. They said the University of Chicago had a different clinical trial, but it was full.

I stayed in the hospital for 60 days total this time, mostly doing maintenance chemo with a side of steroids to keep the leukemia at bay.

Then after an oncology conference, my doctors suggested that another immunotherapy may work. There wasn’t very much information.

Basically, there were two pages of research and only eleven people on it had acute lymphoblastic leukemia. I had no other options.

Worst case, they would have possibly transferred me to another hospital for a different clinical trial which happened to be full at the time. So, I waited.

Over the 60 days in the hospital I was starting to go a little stir crazy, but the doctors suggested I try the FLAG protocol of chemotherapy just in case it might work. It’ a combination of Fludarabine, high-dose Cytarabine and Filgrastim. It’s normally for relapsed AML patients. Unfortunately, it didn’t work.

Just before Christmas and after 62 days, they sent me home and sent letters of compassion to Pfizer and the FDA for approval to use this new immunotherapy.

How did you handle the time between failed treatments and waiting for the new one to start

I was out of the hospital for about two months waiting for this treatment to be approved for me.

I really thought I was going to die. I didn’t really see another outcome happening.

I started cleaning out closets because that’s what you do apparently. I threw a lot of stuff away. My husband asked me what I was doing, and I said, “I’m just trying to make things easier for you because I’m not going to be here, and I don’t want you to have to do this.”

He told me to stop and told me I didn’t know that. I said, “Well, but don’t I?” I was telling him what I wanted him to do if I died. 

I also had some really hard conversations with my dad. I told him I was scared I might not be here, and he looked at me quite frankly and said, “You know, sometimes we all don’t make it until the end.” I was like, “What? Who says that?”

Looking back, I know that was his way of processing and preparing himself for the worst. It was just one of those weird conversations you have when you’re watching Law & Order in the middle of the day with your dad.

What was your clinical trial like

I eventually got approved, and we didn’t know what to expect because there wasn’t a lot of information, but it actually wasn’t that bad. I had four rounds of this immunotherapy which was called Inotuzumab.

Honestly, the side effects – compared directly to chemotherapy – aren’t that bad.

I had a headache for 24 hours and was nauseous for about twelve. After that, it was pretty much nothing. I did found rounds, and I got into remission a second time from that.

What happens after the clinical trial

After I went into remission, it was immediately stem cell time. I needed to get my transplant really quickly after that.

I was in the hospital for another 32 days. I had another intense round of chemo before the transplant because that’s just what they do, I guess. I had total body radiation, and then I got my brother’s stem cells.

My brother is my donor and he’s a 100% match. On February 20th, I was “rebirthed.”

What was the total body radiation like

I had total body radiation twice a day for seven days straight. I got fitted with lung plates to protect my lungs. They put you in a position where you have to lay as still as you can for 30 minutes.

You don’t really feel anything in that moment. It just feels like you’re laying in a room.

You just wear the clothes you’re already wearing which is usually just sweatpants and a loose shirt. That’s it. They wheel you in, they position, and they flip you over like a pancake once.

I didn’t actually feel the side effects of the radiation therapy until after my stem cell transplant. We finished the radiation and did the transplant the next day. There wasn’t really a lag time.

The actual radiation itself is not painful, but the side effects are like getting hit with a truck. I don’t know if it was because I had the stem cell transplant and the side effects compounded or what, but it was intense.

Stem Cell Transplant

What happens with a stem cell transplant

They warn you that you’re going to be in there for about 30 days. The first week, I did the chemo and radiation. Then they set the date for the stem cell transplant.

It’s kind of uneventful. They come in with a cold container and pull the stem cells out. They’re a salmon-y color, and they’re in this big tube.

They hook that up to your infusion thing and start pressing down. It goes into your body, and honestly the worst part is the smell. It smells like creamed corn and vomit. It’s so distinct.

Anytime anybody on the floor was getting a stem cell transplant, I could smell it. I would have to hold my breath when I walked past the room. I’ve never smelled anything like it.

Before the transplant, they gave me Advil or Tylenol and Benadryl. The entire time they were doing the transplant, I was trying to stay awake because it was a good thing that was happening, and I wanted to be awake for it, but I was pretty out of it.

My throat started to close up a little. It felt like I had something caught in it. Their solution to that is popsicles. So, I’m sitting there half out of it from Benadryl, eating a popsicle, smelling like creamed corn and vomit. It was the weirdest thing. 

Describe the stem cell infusion

The actual infusion takes no more than 30 minutes. After that, they just wait to see what happens because graft-versus-host side effects are different for everyone. So, they wait for the side effects and when they happen, they deal with each one as they come. 

That’s why they keep you in the hospital after the transplant. The worst potential side effect I remember them telling me was my body could reject the transplant completely, and that can potentially kill you if you’re body doesn’t react to it the right way.

They just want to make sure the side effects you do get aren’t life-threatening. The ones I got were pretty bad. They were pretty standard, but they were pretty terrible. It really takes its toll. 

What side effects did you experience from the stem cell transplant

You get what are called graft-versus-host disease (GVHD) side effects. Those are brutal and aggressive and uncomfortable. My graft-versus-host side effects were mouth sores, itching, bloating, and eye sensitivity. 

I couldn’t eat solid foods or ingest liquids. It was super painful. I had a full body rash happening. It looked like I rolled in poison ivy.

It was super uncomfortable and itchy. I couldn’t pee. They have these pills they give you that are supposed to help you pee immediately, but they didn’t work. 

»MORE: Explore more on GvHD and what to expect from a medical expert

I left the hospital and couldn’t buckle my bra because I was so bloated from the water retention. I had gained more than 30 pounds of just water weight.

I started having panic attacks about leaving the hospital. I was like, ‘Oh my god, my team’s not going to be here. What if something happens?’

Everything starts going through your head and you start freaking out.

They were like, “You have to leave. It’s time to go home,” but I just kept asking if they were sure. My mind kept going to worst case scenarios. I went home and within a week, the water weight was gone, but I still had the side effects. 

I still had the mouth sores and weird rashes. That eventually went away. I still get mouth sores occasionally, but they only show up if I eat certain foods. They aren’t nearly as bad as they were though. Also, my eyes are really sensitive to the light which is apparently pretty normal for transplant patients.

The mouth sores were by far the worst side effect. They’re so uncomfortable because you can’t eat. I had one in the middle of my throat. I could feel it but I couldn’t pop it. They say you’re not even supposed to run your tongue over it. They told me not to mess with them. It’s just very uncomfortable. 

»More: Leaving the Hospital: Emotions & Support

They gave me a steroid rinse to help with them. They were so aggressive in the beginning that it didn’t really do anything for the first two weeks. Then they start to just pop on their own which sounds so gross because it is. When they pop, pus runs out. 

It’s by far the grossest side effect. You could see it, you could feel and you know what’s happening, so it’s disgusting. I spit up blood because they were in my mouth and it’s just really really bad. 

What helped you with side effects from treatment

Continue to move every day in some capacity. You need every ounce of strength you can get. Even if it’s just walking for a second, get out of your bed.

It’s so important physically but mentally and emotionally as well. Keep working out for as long as you can and as much as you can every day.

The movement helps you get out of your own head and helps alleviate the side effects. 

I did a lot of walking just because it was summertime. Body weighted exercises are also good or any strength training. You can slow it down or modify anything based on how you’re feeling that day. If you’re doing cardio, it’s more high impact. No matter what you’re doing, it’s so essential to have as much strength as you can get.

You relapsed a second time

Seven months after I was recovering slowly from my stem cell transplant, I relapsed again. I had been doing regular blood work, so we caught it early on.

I was so mentally, physically, and emotionally exhausted from the process that I looked at my husband and said, ‘I don’t think I can do this again.’

I was sobbing uncontrollably and got it all out, and I looked at him again and said, ‘Okay. I’ll do this one more time, but that’s it. I can’t do it anymore.’

It was mostly because I didn’t want to disappoint my family. It was hard to dig really deep in that moment and do it again.

Immunotherapy leads to remission

They ended up deciding to go back to the immunotherapy. The immunotherapy worked. It was the Inotuzumab.

I went through four rounds of that, and it worked like a freaking lucky charm. I’ve been in remission ever since. 

Were there any other surprises during treatment

The stroke was the worst of what I had. I didn’t expect that to happen for sure. Having a stroke is really rare. I don’t know if there’s a percentage but if there is, it’s really low. That sent me down a whole other rabbit hole of care.

On top of everything else I was doing, I had to then go see a neurologist and have neurological testing done regularly.

Doing all the added tests on top of what I was going through already wasn’t only annoying, but it was exhausting.

Hair Loss

Did you lose your hair

I lost my hair twice. The first time was the initial hospitalization and chemotherapy. They had told me I would lose it. I was showering one day in the hospital, and a giant clump came out in my hand.

My whole body started shaking, and I was staring at the hair in my hand. I completely broke down bawling. My husband knocked on the door and asked if I was okay, and I said, “I’m fine. My hair is just falling out.”

It was more the reality setting in of what was happening than anything else. I had been putting these toxic poisons in my body, but nothing was really happening, and then that hit me like a ton of bricks. I was like, ‘Holy crap, this is happening. This is real.’

My hair was below my shoulders at that point, and it started knotting up in a terrible ball in the back of my head. There was no fixing it at that point, so I had to cut it out. I had my husband’s sister cut it off my head.

It was pulling at other hairs that were still in my head, and it was terrible. Then it started all coming out, so I just shaved it. I found out I have a really round head, which is a good thing I guess. 

The second time was from the stem cell transplant. They did total body radiation and chemotherapy at the same time. That time, I knew it was going to fall out, so before it did, I shaved it. I wanted to be proactive about it the first time.

How did you emotionally process the hair loss

In that moment, I realized what was happening. It was super depressing at that point. I wasn’t really getting out of bed. I wasn’t doing anything other than showering or eating.

What helped you through the hair loss and all the emotions

My dad and husband were telling me I needed to get out of the room. My husband ran into this man we would see from my window. He was always walking around the floor.

He was flying by. The man explained he was trying to make his body stronger by walking. He said 17 laps around the nurses station was a mile.

We came up with a plan for me to do laps. The first time I did it, it took me five minutes to go one lap around the nurses station. This 60-something-year old man is flying by me. I realized there was something to it, and I decided to get out of bed every day.

There was a whiteboard in my room that no one was using, so we started tracking my progress. My husband knew that if I couldn’t get well enough to walk and get up stairs, they weren’t going to send me home.

»MORE: Dealing with hair loss during cancer treatment

So, that was what started me on setting daily goals and getting out of my own head. That really changed my mindset.

Advice for someone who might be facing the possibility of hair loss

Definitely take control. Shave it yourself. Shave it off preemptively. It can be really painful when it comes out.

There’s also something very cathartic in knowing that you did it rather than it being a side effect happening to you.

The mind shift is so empowering. I’ve said that to other people who have gone through it, and they agree. It’s empowering to take control of it instead of letting it happen to you.

Quality of Life

What was the lowest point you had during all of this

The time in between getting out of the hospital after the second relapse and the unknown of not knowing what the next step was and not having any control over the options. I was pretending to live a normal life, but I was not really participating in the same way.

I just wasn’t there. I was checked out. I was thinking about the next closet to clean or whatever. It was hard to enjoy the little moments that were had.

In the back of my mind, I was thinking, “Wow, this is the last Christmas I’m going to have with everyone.” I was just watching my life as if it were a movie. I wanted to savor everything but didn’t want to participate in any of it. I was trying to soak everything in but not participating. 

I never really lost hope. I just didn’t know if I would physically make it. I knew at some point there would be a crossroads, and I knew I could potentially die from it, but I knew it was going to be slow and awkward and painful. So, how do you compartmentalize that and keep moving about the day?

It put me in a place that I was desperate for hope that I was clinging onto anything. I took it one day at a time and just focused on that.

Preserving fertility

I unfortunately did not have a chance to get fertility preservation done. I was hospitalized, they started me on chemo, and the next day the woman from the fertility preservation center came into the room.

She said, “I’m sorry, I don’t think we can help you anymore because you’re already doing chemo.” 

For a woman, it’s not as easy as a man. You actually have to go through the 28-day cycle to get the preservation done. I didn’t have that time. 

I found out early in 2018 that I was infertile. I had the test where they look at how many eggs you’re producing. I’m not producing anything.

At the initial appointment when she told me this, I knew it was a possibility, but it’s a grieving process. I’ve gone through the five stages of grief. I still have good days and bad days.

Some days, it’s really heartbreaking for me because of how it affects my family. My husband didn’t really have a say. Some days it hits a little closer to home than others.

I’m at the age where that’s the first question people ask. “Do you have any kids?” It’s not on them. They’re just asking because that’s what you do. Sometimes I explain why I don’t and other times I don’t. It just depends on how I’m feeling. It’s an emotional rollercoaster.

My doctors tell me I can still “have” children probably and bear them. But it’s not mine. They tell me I won’t feel that way, but I’m not there mentally or emotionally. I get it. I could still birth a child. It just wouldn’t be mine genetically. It would be my husband’s and some egg donor’s. I’m just not there.

I’m still not there with adoption either. I don’t know if I ever will. Some days it sounds like a really good idea, and other days, I don’t think I can do it.

I don’t know if I’ll ever get there. I’m not closing the door, but it’s not fully open either. There’s a screen door basically. 

My husband and I have had very open conversations about it. I’ll even tell him when I’m having a tough day with it. He listens and understands. He has tough days too sometimes. He doesn’t know if it would feel fair that we had a kid that was genetically his and not mine.

For that reason, he’s more open to adoption. He reassures me that it’s totally up to me. It’s not a yearning for him right now, but he’s open to it. He lets me steer that conversation.

»MORE: Fertility preservation and cancer treatment

How did the cancer affect your relationship with your spouse

Marriage is really hard period. We’ve been together for more than eleven years, and no jokes about it, it’s hard to live with someone that long. Having this on top of it was even harder.

We separately see therapists, and we have also seen a therapist together to make sure we’re communicating and on the same page. If you don’t have open communication with your partner through this process, it will destroy you. ”

I’ve seen it with other people. They just fall apart. Being married is hard and adding this on top of it is just really really hard.

I would recommend immediately going to see a therapist. Even if you know you have a really strong relationship, there are so many tools they can give you. 

The way I grew up, I’m half Japanese, so if you have emotions, the culture is you shove the emotions down and don’t talk about it at all.

Honestly, I did that during cancer. I shut it down and went through survival mode. My husband was much more open to talking about it and suggested the therapist and wanted to do the emotional and mental care the right way.

»MORE: 3 Things To Remember If Your Spouse Is Diagnosed With Cancer

What helped you process your emotions after cancer

I go to a therapist who specializes in cancer. My initial visit with her was pretty funny. She and I disagreed a lot. She told me later that she didn’t think I was coming back. I knew I needed the help. I didn’t know how bad I needed it, but in that moment,

I knew I needed some support. She was honestly a lifeline. Without her during my last relapse, I don’t know if I would’ve made it through in one piece. 

I highly recommend seeing a therapist. The mental side of everything is so important to take care of. It’s so essential because there are so many emotions and thoughts you don’t even realize you’re having. There are so many layers to it.

Even after you’re done with treatment, there are things that happen that change your perspective, and it’s so vital to have the right tools to cope with it. It’s something we don’t really talk about at the oncology appointments. I think my team brought it up once, but it’s not really something they suggest for people.

The doctors should push mental health more. I get it. They’ve got bigger things going on – like keeping you alive, but I do think it should be more incorporated in the overall care. 

»MORE: Read different experiences of a cancer diagnosis and treatment

Paying for cancer treatment

When I was initially diagnosed, I was hospitalized. I didn’t really have a choice. I immediately went on short-term disability with work. Thankfully, because of the laws in place now, they can’t just drop you because of your insurance. I was able to keep my insurance through this whole process.

I have looked at a few of the bills before insurance covering them, and there was more than $200,000 in care. That’s just a few of them I randomly pulled out of our paperwork.

The second immunotherapy I got was free for me because it wasn’t technically FDA-approved. They wanted me to have it, and they wanted to use it for research and getting it through the approval process. God knows how much that would’ve cost.

My deductible is really high – it’s $10,000 a year, but after that they cover everything with little to no pushback. I’m so thankful because out of pocket during those four years, we spent $60,0000 of our own money. That doesn’t count a lot of the day-to-day. The hospital charges you for parking and things like that.

Thankfully, my husband and I were both very successful prior to this and saved a lot of money. Without that and the great insurance we had, it would’ve bankrupted us. I don’t know how people get through it financially speaking without draining savings and dipping into accounts that they don’t want to touch.

It scares me to death to think that someone may have to compromise their care because they can’t afford it. It makes me sick to my stomach. 

My hospital had a good financial aid office. They had two or three people always there for financial assistance questions on the floor that I saw my doctor. My insurance company gave me an actual health care provider contact that I could call and ask questions. They were a case manager, I guess.

Without those two, I don’t know how people figure this stuff out. It’s still so confusing. We threw away 100 pounds of paper this last year.

Be your own advocate

When I went to the Rehab Institute for my stroke, I was getting day passes all the time. Even if you’re not in the best shape, they’ll give you a pass so you can leave the premises and get outside. I was doing that a lot. I wanted to get out.

I shared a room with another girl. There was no privacy. There’s only a curtain between you. Whatever each of you is going through, the other can hear it all. The doctors just kind of dove into what was going on with you without too much regard for my privacy, so I would leave.

So, I had day passes, and we actually went home. My husband drove me home from the hospital because we only lived a few miles away. We hung out and watched movies on the couch.

It dawned on me. Why am I sleeping at the hospital if I’m going home every day? I was still really messed up, but I was able to be at home.

As soon as the next Monday came, we went up to whoever was in charge that day and told them I needed to get out. She said she didn’t know if she could discharge me in time, and I said, “No, I don’t think you understand. I’m not staying here another day.” We explained to her that I’d be going home during the day and coming back to sleep.

I told her I’d do all the rehab every day and put in the work, but I was not sleeping there another day. That’s where the disconnect started happening. They were saying they weren’t sure if I was healthy enough for that, and I said, ‘No. I’m fine. Let me go.’

That was the only time I really felt like I had to fight for myself. I really didn’t want to be there anymore. My husband eventually said sarcastically, ‘We’re all very smart people here. I know if we put our minds to it, we can make anything happen.’

»MORE: How to be a self-advocate as a patient

Do you have any advice for someone who’s nervous about standing up for themselves?

Always speak up. Even if it’s nothing, whatever. If you get that gut feeling, always say something.

It can be a question or telling them that something doesn’t feel right, it doesn’t matter. Speak up.

Because my hospital was a teaching hospital, I’ve had pokes and prods where I’m helping the residents because they’re clearly learning. Even nurses who keep missing veins or something like that, just be vocal.

You have to be understanding of course because they might not see you every day, but you know what your body is capable of.

It’s about taking steps to say, “Hey, maybe this way is the best way to do it,” in a way that doesn’t offend someone. That’s always better than getting poked 20 times and not saying anything.

Support & Survivorship

Do you remember the last time you went into remission? How did you feel?

For a long time, I kept waiting for the other shoe to drop. I was waiting for them to say the cancer was back a fourth time. I thought, “No way this works for real.”

I had a really aggressive cancer, and my body really likes making these angry cancer cells, so I thought, ‘When is it gonna start again?’

I held my breath for about four months after and then started to really accept the fact that maybe it did work.

I stopped checking my skin every single day or thinking that every single cough was something. I eventually got a little more comfortable, but I was a hypochondriac for a while.

How important was it for you and your husband to have outside support?

My dad was like a freaking rock. He would come see me every day he could. Even if it was only 10 or 15 minutes, we would talk or watch Law & Order. He was supporting me the best way he knew how which was just being there. He would come take me to appointments if my husband couldn’t.

My mother-in-law was a freaking rockstar as well. She took me to several appointments and sat with me during infusions. Without those two, I don’t know if we could’ve done it. I don’t know how I would’ve gotten physically to the appointments without them helping out when we needed it.

Did you feel like you could ask for help when you needed it

It was extremely difficult for me at first, but when I had my stroke, I was completely reliant on everybody for everything. I’d have to ask my husband to put my bra on and everything.

After that, I was willing to ask for anything I needed because I knew I wasn’t going to get through it if I wasn’t going to ask. I tried to do things myself before the stroke, and it was already hard. After that, I absolutely had to have the help, so I learned to accept it and ask for it.

Was there any gift or service anyone gave to you or did for you that really stood out?

Blankets are always essential for the hospital. It’s so freezing in there and they only give you the thin little blanket. It just doesn’t help that much. Definitely bring blankets with you. 

There is one gift in particular that my friend gave me that stands out. I was in the hospital for 60 days straight at one point.

https://www.youtube.com/watch ?v=cE0TdXFMhp0&list=PLX_dE9R0W4oH9MtXKZLH1XNpBYh3tAto&index=2

So my friend went to Target or wherever and gotten a bunch of basic cotton shirts. She cut the entire side of them off, and velcro-ed it back together. That way I didn’t have to ask the nurses to take out my IV if I wanted to shower.

I could just take the shirt off, wrap my arm and shower. Before that, I would have to wait for someone to come unhook me. That was the best gift anyone could’ve given me in a million years. Having the independence to shower when I wanted to was awesome.

»MORE:  What kind of support cancer patients say helped the most

The “new normal” after cancer

I kept going through my treatment wondering when my epiphany was going to happen. I kept waiting for an a-ha! moment.

I asked my therapist this, too. “When is my big lesson coming?” Finally, she told me, “You haven’t had one big moment. You’re having a lot of little ones. Your perspective has shifted so much and you don’t even know it.” She’s right.

I didn’t have this one big moment per se, but I had a lot of little shifts over four years that made me realize that all the physical stuff we have in this life doesn’t matter. It’s all dumb. Yes, it makes you happy for like 10 minutes, a couple of days, or maybe a year, but it all doesn’t really matter.

What is your advice for someone who has just been diagnosed

Just breathe. It’s going to be okay. You and your body are so much more resilient and strong than you think. Your body can withstand so much and recover.

There is a whole other level you can dig deep and find that can get you through anything. You just have to be open to it. You cannot get through it without digging really deep sometimes and knowing that you can get through it.

Do you have a message for anyone reading this

My name is Casey, and I had acute lymphoblastic leukemia, and my message for you is to keep moving your body. I equate the body to the tin man. If you don’t keep moving it, it will eventually freeze up.

You have to keep your body lubricated by moving it. Sometimes that’s the best way to heal – through movement. You are able to tap into a deeper source of something inside of you and it can almost be therapy.


Thanks for sharing your story, Casey!

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Acute Lymphoblastic Leukemia (ALL) Stories

Leukemia Stories: Acute Lymphoblastic Leukemia (ALL)  | Evan’s Patient Story

Evan L., Acute Lymphoblastic Leukemia (ALL)



1st symptoms: Extreme fatigue, easily bruised
Treatment: Chemo infusions, chemo pills, spinal taps, cranial radiation
Leukemia Story: Acute Lymphoblastic Leukemia (ALL), Relapse | Casey’s Story

Casey H., Acute Lymphoblastic Leukemia (ALL)




1st symptoms:
Lump on throat, extreme fatigue, shortness of breath, bruising easily
Treatment:
Chemo, immunotherapy, radiation, stem cell transplant
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1st symptoms: Mild shortness of breath and palpitations
Treatment: Chemo, targeted therapy, double cord transplant
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1st symptoms: Enlarged lymph nodes, pain in abdomen, nausea
Treatment: Chemotherapy, bone marrow transplant
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Ciara T., Acute Lymphoblastic Leukemia (ALL)



Cancer details: Treatment without blood tranfusions
1st symptoms: Fatigue, shortness of breath, night sweats, petechiae
Treatment: Chemotherapy
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William Y., Acute Lymphoblastic Leukemia (ALL)



1st symptoms: Extreme fatigue, achey hands
Treatment: Chemotherapy, CAR T-Cell therapy
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Categories
CAR T-Cell Therapy CAR T-Cell Therapy Non-Hodgkin Lymphoma Primary Mediastinal B-Cell Lymphoma (PMBCL) R-CHOP R-ICE Relapsed and Refractory Uncategorized

Non-Hodgkin’s Lymphoma Stories: Primary Mediastinal B-Cell Lymphoma, Relapsed, CAR T-Cell Therapy

Sonia’s Non-Hodgkin’s Lymphoma Story: Primary Mediastinal B-Cell Lymphoma (PMBCL), Relapsed, CAR T-Cell Therapy

Sonia was 24 years old when she was diagnosed with non-Hodgkin’s lymphoma, primary mediastinal b-cell lymphoma (PMBCL) subtype.

In her extensive story, Sonia details going through chemo before relapsing, undergoing more chemo before CART T-cell therapy. Sonia also describes losing hair (multiple times), what support helped her the most, and survivorship.

  • Name: Sonia S.
  • Age when diagnosed: 24
  • Diagnosis:
  • 1st Symptoms:
    • Chest pain
    • Turned into superior vena cava syndrome (SVCS)
  • Misdiagnosis: Costochondritis
  • 1st Line Treatment: R-CHOP Chemotherapy
    • 6 cycles, each cycle = 3 weeks
    • Outpatient: go into clinic for hours-long infusion one day per cycle
  • Relapse Symptoms:
    • Persistent, dry coughs
    • Headaches
    • Return of SVCS
  • 2nd Line Treatment: R-ICE Chemotherapy
  • 3rd Line Treatment: CART T-Cell Therapy

Table Of Contents

There’s varying degrees of gratitude and at this point, I don’t even know how much gratitude I can express but everyday is a blessing.

It’s ironic and a cheesy cliche but it’s true, sometimes I think I can’t believe I’m still here and that I can do what I do. It’s a lot.

Sonia S.

Video Interview: Sonia’s Story


Diagnosis

When did you feel something was wrong

I remember this very clearly because I was in my first semester of grad school at Georgetown. I usually go home to my parents’ home in Maryland on the weekends. I was home alone on a Saturday night, I had ordered dinner, and for some reason, I felt some chest pain.

I thought it was maybe because of the food. I had no idea what it was, just thought this is weird and should get this checked out at some point, or at least monitor it.

At the time I was approaching finals, really busy with school and life in general, so I waited a week or so before I decided to check out Student Health.

I think everyone knows how not-so-great Student Health can be in diagnosing things and checking you out. I didn’t think it was anything serious at the time, I just thought it was weird that the chest pain wasn’t going away.

The student doctor diagnosed me with costochondritis, which is essentially some kind of soreness with the chest bone or something. I got some painkillers or random meds that didn’t do anything. 

When did you get some tests done

I kept on ignoring it, letting it go until the end of semester since I had so much going on. It was closer to Christmas when I decided to check out the urgent care near my house, maybe get some blood tests or scan.

It was at that point where they found there was a mass in my chest. 

At that point, we were still like, okay, a mass, that’s interesting. We’ll just need to follow up with another doctor. We were referred to a surgeon at Georgetown. We had to schedule it for after New Year’s because of the holidays. I, myself, was traveling. 

This chest pain was still going on and it grew worse until I got back from vacation. We went to the surgeon who said there’s a mass, we need to do a biopsy before we take it out. They thought it was a benign mass that they would take out.

What scans did they do

They did an X-ray, then eventually they did a CT. They said it was a mass but they didn’t know if it was malignant or cancerous. It wasn’t until after the biopsy that confirmed everything. I walked out of the surgeon’s office; it was like, “Okay, we’re done with you. You’re going to need to go to an oncologist for this.” It was all so quick. 

Describe the biopsy

They did a core needle biopsy. I was under. They take a small sampling of the tumor or mass. That’s the sample they used for diagnosing everything. 

How long did the biopsy results take

It wasn’t very long, probably within a week.  

Cancer hadn’t even crossed your mind

No, it was still, “I’m going back to school.” Or I might have to take a couple weeks off for the surgery, because I was told I would need surgery.

How did you learn your results

The biopsy was a separate thing. The surgeon had received the results. We were going in for our next consult, getting ready to get the surgery.

That was when he told us it’s not benign, it looks pretty malignant, and we’ll refer you to an oncologist. That was about it.  He said, “Sorry, this is not for us.” 

»MORE: Read different experiences of a cancer diagnosis and treatment

What was your cancer stage

They weren’t really clear and I don’t think at that point it mattered. I remember they said it doesn’t matter if you’re stage one or two, you’re getting the same treatment. So I never really looked that much into it, as long as it wasn’t stage three. 

Treatment Plan and Decisions

How did you finally get admitted to the hospital

It was awhile before we decided to figure out the oncologist because we were still navigating everything. We had an appointment scheduled for the following week, but that weekend the chest pain was getting a lot worse, to the point where my face started to swell, and I was really worried about that.

My face was getting really bloated, the pain was getting worse. I was still in my apartment in DC. My mom was still at home listening to me describe these symptoms.

She was like, “This is getting really serious. I need to contact the hospital to let them know we can’t wait till next week to see the oncologist.”

My mom faxed all my medical records to every local hospital she could find. The fact that she even needs to fax medical information these days (is crazy).

Johns Hopkins was the first one to respond. That’s how I got admitted the next day. They knew this was SVC and it could get serious and deadly very quickly. I was admitted immediately.

They gave me some steroids to calm it down a little bit. That was when the bedside manner, he comes in and tells you, “Yes, this is lymphoma.”

I knew it, but that was when it was confirmed. He said I’d have to start chemo the next week and presented my plan. 

How did you navigate the waiting for answers

It was me and my mom in that surgeon’s office. We came in thinking we’re getting surgery. Then we get thrown for a loop.

I don’t know about your parents but I don’t think any parents would ever imagine this happening, so my mom has always been the very upbeat, positive, happy type of person. Even with some terrible news such as this, it’s crazy to say this, but I think she’s already pretty resilient due to a lot of other circumstances in our lives.

Both her parents passed away from cancer so this is something really close to our family. She’s also really good at hiding her emotions, so I’ve always been amazed, to this day, how well they hid it throughout the journey, not only in the beginning. 

We were just processing everything. People assume once you’re given that diagnosis or told this is actually malignant and could be cancerous, that your whole world falls apart.

But it takes some time to even process that information. It’s not just, “Oh it’s the end of the world!” It’s that this is the new life we’re going to deal with and we’re going to deal with it together.

Figuring out where to go for medical treatment

This is another thing that was pretty frustrating. I wasn’t even sure, myself, where I would be treated because I was in school in DC, so we thought maybe we’ll try Georgetown. But my parents are closer to Baltimore, so maybe I should stay with them and they can take care of me. 

We consulted both Georgetown MedStar and Johns Hopkins, around the same time, within the week or two. We were trying to get second opinions, thinking about where I should be treated.

Ultimately, we decided on Hopkins. It was the best choice because it was most convenient for my parents to come and see me, and work out everything.

There was really no time to consider, “Do I like this person more or the other?” It was really just what’s more convenient? It would have been either a 30-minute drive or over an hour, depending on traffic. When it comes to chemo and having my parents take time off of work to drive me to and from treatments and things like that, there was really nothing else to consider.

We thought Hopkins is great, and it’s true, Hopkins is really good at what they do. Might as well just do that. Didn’t make much more sense to go to Georgetown, so we stuck with that.

Did you have to do more tests before getting admitted to the new hospital

I didn’t do anything else after the biopsy. They needed to check all the records. So I did the biopsy at Georgetown, then they needed me to transfer my own records through them to another hospital. It was a whole ordeal. 

Honestly, they scheduled everything when I was admitted because of my swollen face. They gave me the meds and gave me the schedule, you’re coming in next week and you’re going to start. So I didn’t do much else. I may have done one more scan at that point but it was very fast. 

Describe the PET-CT scan

A PET scan takes all morning or all afternoon. Usually it’s in the morning because you’re not supposed to eat for at least a couple hours. Patients get all this information usually the day before, making sure they’re following the procedures. 

You go in on an empty stomach, no fluids either. You have to drink something but it depends on each hospital. For some it’s white, some it’s a lemon flavor, there’s different flavors. It’s a contrast but also this other liquid you drink that lights up your body, making it easier for the scans to read your body. 

You sit there for about an hour or so, drinking that, and it’s usually in a room where you’re by yourself. It’s better that your body is warm and not cold for some reason. They’ll usually give you a blanket to keep you warm.

Sometimes they say you can’t use your phone because you can’t have brain activity, but it depends. If they’re not scanning your brain or don’t care about that part, maybe it wouldn’t matter.

I was peacefully waiting in the room drinking that fluid. The scan, itself, doesn’t take that long. They call it PET-CT because it’s two different scans.

I did the PET first which was maybe ten or so minutes. The CT was maybe five minutes. [I was] in and out of there pretty quickly. 

It was pretty much an all-day process because depending on the hospital you go to, you may also be able to meet with your doctor the same day after.

Mine are usually in the morning. I will have lunch with my parents at the hospital, wait for the results, and then meet the oncologist after lunch for him to explain the initial results with me. 

Describe the contrast dye during the scan 

That’s CT with contrast. Usually, for me, I always got them with contrast so I always got the IV in if I didn’t already have a line in. They warn you it feels like you’re peeing. You get a warm feeling down there. 

I would have the IV on my arm but I think I grew sensitive to it. Everytime it went in, it would burn my veins so much. After awhile I thought it was just part of it. Afterwards, my veins are fine. It’s just what I have to deal with every time I get a scan.

It’s never fun to have to go get the scan, anyway, because I don’t have a port or line in right now. So even getting the IV in takes awhile. If anything, it got a little worse because my veins were crying from the contrast every time it goes in. 

How did the oncologist describe the treatment plan

Doctors will say different things. Mine at Hopkins recommended R-CHOP. He said that would be outpatient, once every three weeks. Mine was usually every Friday. I’d go in basically all day. The first one is usually a little slower because they don’t want to give it to you all at once. 

It was for six cycles. I started late January and ended around early May. That was half a year of R-CHOP. There’s another one they recommended, R-EPOCH chemotherapy . It was another option but it would have involved more consecutive days each cycle.

We brought that up with the Hopkins oncologist, be he said it’s a slight difference in success rate. He said this is just what we do.

It made sense because it’s Hopkins. If you go to a big hospital like that, they have their ways of doing things. If you bring up any other treatment, they’ll be like, we could, but no.

Part of that second opinion during that one or two week-period, we went to Georgetown Medstar. The oncologist there said yeah, we can do R-EPOCH if you want. That one was completely like, this decision is up to you. If you want to do this, we’ll do this. If you want to do that, we’ll do that. 

Did you have a choice with getting an IV, port, or PICC line

No, I got an IV each time I went. I think it made sense because I only had go in once every three weeks, and it was for only one afternoon or one day. At the time, my veins were amazing for a young person who had no prior experience to this.

It wasn’t until I relapsed a couple months later when I started R-ICE, that was when each time I had to go in three days every three weeks. That was when I got the Hickman line, which is a central line, two or three tubes that literally pops out of your chest. It’s not like a PICC line that’s hidden, it’s popping out.

They had wanted to insert a PICC line but for some reason, my veins just weren’t having it. They couldn’t get in it so the Hickman was the last effort, this will work, we’ll just do this.

It’s not the most attractive or convenient because you can’t wear anything lower than here unless you want people to see. There’s a whole regimen – you have to clean it. It’s a lot.

Why didn’t you get a bone marrow biopsy

I didn’t know that was part [of the process]. I think they just went by the biopsy and PET scan, and were good with going with everything.

Did they talk about fertility preservation?

No, when I first started, this was all happening within a week or two, so there was no discussion at all. I hadn’t even thought about that. I was just like, okay, let’s do this. We’ll be over with this in a couple months. Very naive of me. 

No discussion at all or even thought about it. Maybe they mentioned it briefly but there was no discussion of, “You should get this done.” It wasn’t until after I relapsed where they said, “We’re going to put you on R-ICE and you’ll be on track for a stem cell transplant. Has anyone talked to you about fertility?”

I said no and they offered to refer me to someone. I eventually did speak with someone over a year later, when I was in the process of preparing for the transplant. 

In the end, I decided not to go through with it because at that point, I was really exhausted by all the medical treatments.

Just listening to the fact that I would have to stab myself in the belly every day for awhile, I was like, I’m just tired. Can I not?

This was not something I decided immediately. I was with my boyfriend who was long distance. We went through the options and with this, there was a small chance that it would even be successful, at least that’s what I was told.

I thought if there’s a small chance and I don’t have to pay fees every year to maintain it in storage. I also didn’t know if insurance would cover it, because it was that year when Maryland passed the law where insurance had to cover cancer patients’ fertility treatment. 

For some reason, my insurance rejected my appeal. I don’t know why. I think everything compounded together – the insurance rejection, the small chance of it working, the fact I’d have to continue paying (storage fees), and not sure I want kids. From all of that, just thought not going to go with it. 

It’d be great to know if I’m still able to have children but I’m still getting periods, they’re pretty normal. I think it should be all okay. 

»MORE: Fertility preservation and cancer treatment

First Line Treatment (R-CHOP Chemotherapy)

What were the infusions like 

The infusions usually started in the mornings because they know you have a long day. The first one was all day because they do try to ease you into it. Even in the beginning, it’s not like you go in and they immediately give you chemo. They give you fluids, they give you some Benadryl to make you sleepy, they do a lot. 

It’s maybe two hours later after you arrive when they actually start everything. When they do, it’s pretty uneventful to be honest. It’s like any transfusion or blood draw, except for the part where, depending what you’re getting, they’ll get some extreme outfits.

They’ll wear some protective gear to protect themselves. You’re thinking, “Wait, you’re wearing all this for something going inside my veins?”

It makes sense because they are exposed to this constantly, so maybe that’s the concern there, but at the same time, I’m like, oh man! 

Otherwise, it’s pretty uneventful. I brought my laptop and books every time, but I decided I didn’t have the bandwidth to even read. So I watched a lot of Netflix.

My parents, they’re amazing, they went with me to every single appointment. They sat there on the phones just talking to each other, keeping my company. They’d bring bags of food every time, like snacks and things like that. It’s an all-day affair. They’d have to get lunch down at the cafeteria.

My parents are immigrants who have been here for awhile, but at the same time, American food is just meh, they’ll have it if they need to. I felt a bit bad but it was all the hospital had so they’d get Subway or random cafeteria food, that wasn’t healthy at all, which was ironic! 

I was of course, the youngest person there, always.

It depends on the center but I was in an area where there were a lot of other patients. You don’t get your own room. You get your own nook. Sometimes it’s a bed near the window or an actual bed, or a reclining chair in front of a TV.

I had a choice. Sometimes they’d ask do you want the bed or the chair? Sometimes it’s busy with people getting treatments so you don’t have a choice. It’s just chilling at your own nook for basically all day. 

Having company at the infusions

[My parents] were with me because this was pre-COVID and pre-visitor restrictions, which I’m really grateful for. I can’t imagine going through all of that by myself. I would feel so lonely. This is something that is so important, to have that support with you if possible. 

Anyone who can be there to support you, even if you’re not talking and just sitting there for hours. 

When did you feel the R-CHOP side effects

That day I didn’t feel much of anything. Maybe I was very thirsty. But definitely starting the next day, I was feeling weird. I wasn’t sure how to describe it. I think it was nausea but I didn’t know what it was at the time.

I remember very vividly because I was still part of this club on campus, a magazine club. I was still editing for the campus publication. We had a meeting that Saturday, the day after I got my first chemo.

I still had my hair, I was like, I’m good, I can go to this meeting. I was so ambitious. Yeah, don’t. After you get your chemo, try to stay home as much as possible, get some fluids, get some rest.

But I was so ambitious thinking I can do this, I can go to this meeting and I can still edit for this magazine. I did still work for them but I remember I was feeling sweaty, feeling weird during that whole meeting. 

My parents drove me there, they’re amazing, because at this point I had moved out of my apartment and was back at my parents’ house. They drove me back and said, “How do you feel?”

As soon as I got in the car, I was like, “Not good.” Drove home, immediately rested for the whole day because I felt so nauseated. I realized, okay, I can’t do this. I can’t go to school after chemo.

I’m glad I’m taking medical leave of absence for the whole semester and taking things really slowly. The next few days, I was trying to get the rest. 

When did you start losing your hair?

My hair started falling out a couple days before my second treatment, so within two weeks or so. That was interesting just because it started off slowly. When I would run my fingers through my hair, some things would come out. But then it accelerated super quickly. 

So at one point, maybe after I washed my hair, I’d see the shower full of hair. I’d see literally bald patches. That was really bad. So I decided I don’t want to see this anymore, I don’t want to keep looking at my hair falling out, so my mom helped me shave. 

My mom shaved the second and third times I had to shave, but the first time I actually had to go to a hair salon nearby because my mom was a little worried, she hadn’t dealt with this before. We went to a hair salon saying we need to shave. My mom casually mentioned that I had cancer, which was really awkward to tell people. 

They were like, oh my gosh, of course! So they ended up not charging us, which is so kind of them. They charged my mom because she got a cut, as well, a brief trim.

So I got my hair shaved in public in a salon. I just wore a hat at that time because it was still around Winter so it was okay to be covered. 

How did it feel getting your head shaved

For most girls, they define their beauty by their hair, in a way. If they don’t have hair anymore or if they’re bald, they just don’t feel pretty. That’s definitely how I felt.

But I don’t think I really knew how influential that would be until after it all happened. As it was happening, it was like a stranger is shaving my head, I’m not going to get that emotional. I’m going to be fine.

Even after that, I put my hat back on, bundled up with my scarf, you couldn’t really tell. I was like okay, it will be okay.

After that, every time I looked at my hair, it was almost amusing. My parents would say you’re bald, I’ve never seen the shape of your head! Your beautiful head! They’d want to touch it and say wow, it’s so cool, you have a great head. You’d get random compliments when you’re bald. 

Everyone is pushing and encouraging you, saying it’s okay. But when it starts growing out, like even now it’s pretty short, it just doesn’t feel the same.

Of course it’s different for everyone. Maybe it’ll be more emotional for others, maybe others are like, I’ve always wanted to shave or try this.

For me it was: I have no choice. I can’t do anything else. 

»MORE: Dealing with hair loss during cancer treatment

Describe the post-treatment PET-CT scan 

At Hopkins, because it’s such a huge hospital, they have a lot of fellows and students. Because they have so many patients, my primary oncologist actually took a back seat throughout my treatment. I was really working with a fellow. 

The fellow told me that the last scan was basically okay. It was never really clear, to be honest, they were just saying it looks pretty good. There’s slight activity that’s likely scar tissue. So they dismissed it as scar tissue and I accepted that. 

First Relapse

Feeling symptoms again 

I took that as an okay to essentially go abroad after that because again, ambitious me, I didn’t want cancer to stop my life so I had received a fellowship to study abroad in Taiwan. I said, hey, can I do this? Is it okay to go?

He had told me, “I wouldn’t really recommend it. You just went through all this, you still need to do check-ups, but as long as it’s not a third-world country where you can’t get blood tests, then it should be okay.”

So I said okay, I guess I’ll do it. At that point, I didn’t feel the need to stay because this felt like a once-in-a-lifetime opportunity for me, so I decided to take it.

To this day, I don’t regret it because things happen for a reason. I had left around June and had just finished treatment in early May. I arrived and within a day, I started coughing. That wasn’t my initial symptom. I hadn’t been coughing before all this started. It was really just the chest pain.

So this was a  new thing and I chalked it up to pollution or a new environment, or anything. I even saw a cancer center in Taiwan just to make sure and double check everything is good. Everything was good.

But the cough was consistent. It was a dry cough, so that made things seem like they were really okay, that it was just something. That cough lasted from June through my relapse in October, when it was confirmed.

The cough only got worse. I couldn’t even get a word out without coughing something. It was really awkward, too, because I was doing an internship, I was starting classes with people, and wearing a hat, too, because I was still pretty bald. 

You chose to keep the cancer private

I feel like I was the odd one out. I think cancer really affected my outlook in terms of trying to make friends and trying to make connections. I didn’t want to be like, “Hey! I’m Sonia, I’m on this fellowship, but I also just had cancer.” 

Eventually some people did figure it out because I was very public about sharing it on my blog. If they added me on Facebook or anything, they would have found out some way or another.

But I still didn’t tell anyone except for my boss at my internship. It really prevented me from getting social. I tried to hide everything even though I had this weird cough and was bald.

When did your symptoms noticeably worsen

Closer to October is when I realized this was actually getting really serious. The swelling came back. I was getting serious headaches. I was in communication with a different fellow at Hopkins. She’s like, keep track of it, it should be okay.

But I decided to book a flight back home at some point just to get everything checked. That was one of the scariest moments of my life. I remember when I was at the airport in Taiwan, I was already starting to get winded.

When I was home, it was really bad. I was carrying my luggage, I was carrying everything and I couldn’t even walk without taking a break. I couldn’t breathe. It felt hard to breathe. I was like, this is really bad.

In the meantime, I’m emailing my oncologist saying I’ve just arrived, what do I do? Should I go to the emergency room? They said yes, go now. The symptoms you’re describing sounds like you’ve relapsed.

This was through freaking email on my phone. When I just landed, I’m emailing this fellow and just describing all the symptoms. I’m like I can barely breathe. They’re like, yeah, you relapsed. So that was what happened. 

You wound up going to the emergency room 

My parents picked me up, we went home. I ate dinner. It was around nighttime and we were just preparing because we were thinking let’s go to the emergency room to get things checked out, to at least get some blood tests and then a CT scan. Obviously, with a PET scan it requires more insurance approvals so the least they could do was a CT scan.

That was a nightmare in itself. In addition to the nightmare of relapsing, there was the nightmare of going to the emergency room because I had been dehydrated I guess.

I hadn’t drunk enough water because I was around the world, so they couldn’t find my veins. They had three different nurses poke me eight times at least. This was eleven at night and they couldn’t even get a needle in my arm. 

They managed to get some blood but they couldn’t get the IV in for the CT scan, so we spent a few hours there for essentially some blood draws.

Admitted to the main hospital next day

It was the next day when I could actually go back to Hopkins and I was admitted immediately. 

Everything else from that was a blur because they immediately gave me chemo. It wasn’t even a question. It was, “Describe your symptoms, and okay, we’re starting chemo tomorrow. We’re going to monitor you and you’re starting.” 

In the blood draw, they saw a certain indication – a level was extremely high. It was the LDH that was the indication that the body’s fighting off something.

They were able to do the CT scan at the hospital, thankfully. While I wasn’t able to do it at my local general hospital, they were able to do it before I was admitted and then started everything. 

Second Line Treatment (R-ICE Chemotherapy)

Preparing for second line treatment 

This was a little different in that I was assigned to another team, this time. That’s the thing. I was bouncing back and forth. I don’t even know what team I was on at that point.

I saw a new oncologist, saw a new doctor, saw a  new fellow every time. I was assigned to this group. 

I remember lying in the hospital bed and a team of people would come. All of them would be fellows and there’d be one (attending).

Every time they’d come see me, the whole team would come. Maybe one of the fellows would speak to me directly. Before everything started, they told me this would all be in preparation for a stem cell transplant. I’m not just getting these four cycles and done with it. I’m getting these four cycles and then moving on with the transplant. 

I was still a little bit confused, to be honest. I wasn’t sure why I couldn’t get this and be over with. Through all these treatments, your blood cells are going to be diminished, down to basically nothing. It’d be really hard for your system to just make more blood cells, so I guess that’s why [the need for] the stem cell transplant.

I was on track for that. They said four cycles. After two, I was back in remission, which is a good sign. But for some reason, they  still wanted to continue because that’s part of their process. Even though you’re in remission after two, you have to do two more, which was not fun. 

Describe the R-ICE chemo cycle

R-ICE is three days outpatient, another couple hours each day. They’ll distribute it over three days, every three weeks, for four cycles. I remember I tried to debate with them saying can we only do three or two? 

Getting a second opinion on treatment options

While I was doing all this, I went to National Institutes of Health (NIH). That’s another thing. I feel really lucky to be in this area where there’s Johns Hopkins, NIH, amazing hospitals. 

I went there with my scans, told them my whole journey, because I wanted another opinion to see if this is okay. Should I be considering CAR T-cell therapy, because I had heard about that. 

They saw my scans and said, technically, you’re clean. I think what they’re doing at Hopkins where you’re on track for a transplant makes sense. If something goes south or something changes, you can come back to us.

If I even would have called or applied for CAR T or anything else, the CAR T I would have received was already approved for at least a year at that point. 

While it was pretty new, it was not a clinical trial, so I didn’t need to go to NIH. I could get it done at another hospital. 

R-ICE chemo side effects

It was pretty similar. Nothing markedly different. It was really the same process where I lost my hair again within two weeks or so.

I had nausea. Some people have mouth sores but I actually didn’t get mouth sores. Going back to R-CHOP, I didn’t have it until the sixth cycle.

For R-ICE, it wasn’t an issue for me, either. It was really just the nausea and fatigue. 

What helped with the side effects

With R-ICE, I was extremely constipated. I did bring it up with my nurses and they said over-the-counter medicine to treat that would work, MIRAlax I think. Other than that, I didn’t have major issues where I needed to get other medications. 

In general, just stay hydrated.

That’s sometimes not a problem because your body’s just begging for water. They tell you to try to drink more to flush everything out because you don’t want all that staying in there. 

Also, try to eat. I know that my appetite was not great. I think the worst was when I had the conditioning chemo right before CAR T. That was when I had literally zero appetite.

I was just bedridden, I couldn’t drink, I couldn’t eat anything. My tip there would be just find one or two things that you can stomach. For me, it’s really weird to say, but it was this fruit juice smoothie that I got from my local organic restaurant, and also cornbread.

Those were the two things I could eat.  I couldn’t eat anything else. You couldn’t even ask me to eat an egg!

»MORE: Cancer patients share their treatment side effects

What’s it like losing hair a second time 

It was more like, I’ve been through this before. My hair hasn’t even grown out that much at that point. It was a boyish style. I was like, I’d be fine cutting this.

My mom always said she could cut hair for a living. She cut our hair as children but those children’s haircuts didn’t count. So she was really on board with shaving. She said I can do this. It was pretty easy. I didn’t have to go to a salon and ask them to shave my head because I have cancer.

It was much different the second time around. It was much easier because I knew what to expect. I already didn’t love my hair so it wasn’t a problem.

Stem Cell Transplant

What tests did you undergo before the stem cell transplant

At the end of the four cycles, I had to start all the tests that they needed to do for the transplant. Before you do a transplant, they have to make sure everything else is okay with you because if anything goes wrong with the transplant, they need to know it wasn’t because of a pre-existing condition or some other issue you had before. They have to know it’s because of this.

I remember going in for a lot. They schedule you as if it’s your full-time job, where you have to go in constantly for a million tests. I think the busiest day was January 31st. That was when I went in for maybe 30 tubes of blood drawn for me. It was a table full of blood. They have to test out literally everything.

I had a lumbar puncture to test if the cancer spread there. I had to test my lungs. I had to get a scan for my brain. I had to test everything. It was really exhausting just to be there all day and have my parents be there, as well.

I’m sure it was really hard for them to just sit there and wait for me to do all this stuff. I also had gotten a PET scan, one last one before the transplant. 

Getting a stem cell donor match

I found a match at that time. After R-ICE, I had to go through a whole Be the Match thing. I had to get all my friends and say can you please join this registry because I’m Asian so it’s really hard for me to find a match.

Luckily, I ended up finding two matches. One either dropped out or something and it didn’t work out. One did confirm.

I went through orientation. You sit in a room where they have a slideshow of going step by step, this is what to expect, as if it was my first time with cancer.

They really just want to make sure you know exactly what to expect because a transplant is no joke. You could have serious side effects, short term and long term. So I remember being there, experiencing all this. 

Second relapse

The next day, I still had some things going on. I had just finished up the lumbar puncture and I get a call. I’m supposed to meet with the doctor later, but I get a call and the nurses tell me, actually, you need to meet with the oncologist now.

I’m like, okay, that’s weird and that’s not good, because I had just gotten the [PET] scan the day before so it has to be the results from the scan, or something. It has to be something.

I just knew it was bad news. Why else would your oncologist want to see you immediately? If you see your oncologist, usually you’re going to wait an hour or two, it’s never on time, it’s always going to be late. If it’s early or on time, there’s something wrong. 

I ended up seeing him. I was exhausted because I had gotten all these tests, please don’t tell me this bad news now. He told me it came back for a third time. That transplant was cancelled because you have to remain in remission to be going through a transplant. They’re like, there’s no transplant. 

I’m like oh, so all these tests were useless? All the tests were for this very purpose and so I remember just crying. I hadn’t showed any emotion to the oncologist before that. I was just very calm and collected. But at that point, I’m like, oh God, a third time? It’s over. That was devastating. 

Deciding on third line treatment

The plan after that was really just to see another doctor about radiation because they were planning on, okay, let’s do aggressive radiation, more chemo so we can get you back into remission and then do the transplant. 

That plan to me, I’m like, are you serious? I just went through all this and you want me to do more? I actually hadn’t done radiation before this. Radiation and chemo and a transplant. I’m like, oh no. 

At that point, I knew I had to be my own advocate and try to figure out other options. 

»MORE: How to be a self-advocate as a patients

Getting another opinion (on CAR T-cell therapy)

I decided to check out University of Maryland down the street, just consult about CAR T-cell therapy being an option. I had heard about it and I heard it was an option as a third line (treatment), if your previous treatments failed. It was still relatively new at that point. It had only been FDA-approved for a year, it had been in clinical trials before that. 

After that consultation and they essentially said I was okay for CAR T, I was so relieved. I immediately was like, we’re going with this. There’s no way I’m going through what they wanted me to do at Hopkins. 

CAR T-Cell Therapy

Describe CART T-cell therapy

CAR T is a whole nother animal because they’re not giving you chemo or radiation, like standard treatment that they have for everyone.

It’s more like they take your cells, something called apheresis, they collect your T-cells and send them to a lab in California. Now I think they’ve opened a lab in the hospital. 

But at the time, they sent them off to California. They kind of freeze them in a way and then re-engineer them into new T-cells, which are told to essentially find your cancer and attack it. 

In terms of the actual process of CAR T, it’s like any blood transfusion, but you have to be admitted because they expect you to stay for at least seven to ten days.

They give you back your own cells, except they’re slightly different and essentially an army of T-cells that are going into your body and attacking everything. 

The day of CAR T, I say it’s my best and worst day, because before CAR T and similar to the transplant, you have to go through pre-conditioning chemo.

You have to give some room for your blood to come back into you so they have to essentially deplete your blood cells and blood. Also, it’s ideal to have as little cancer load as possible from what I heard.

»MORE: Read other CAR T stories

Getting radiation before the new T-cells infusion

I actually ended up getting radiation therapy. It’s what they call bridging chemo, where you’re in limbo. You’re waiting for your next treatment but you can’t wait that long so you have to get something else in between.

So I had a very light dose of radiation in between having my T-cells collected and waiting for them to come back. That process takes about two to three weeks. 

During those couple of weeks, I was thinking this cancer is growing inside me. I don’t want to keep waiting. So it was another moment where I elected to have radiation. I said hey, is there some way or can I do something I can do while I’m waiting? So I ended up getting the light radiation. 

Describe the radiation 

For a new treatment, you have to do a consult with the doctor. They will prescribe this treatment for you depending on what you have. I was also thinking about proton radiation where it’s even more precise. For me, regular radiation was good enough. 

You’ll have a couple appointments but at first they have to draw some marks on you so they knew where exactly to target on the day of. They used a permanent marker to draw on my chest.

You just have to make sure you don’t get it wet. They’ll give you some things, a guard, so when you shower you can protect it. 

You go in to have them get you ready and prepare you mentally, as well as physically. When you go under radiation, my team was incredible. They were super nice to me and I felt really relaxed and comfortable. You don’t feel anything. You’re just on the bed for maybe a couple minutes and then you’re done. It’s very simple. 

Pre-conditioning chemo 

If you take into consideration the fact that they need to give you fluids before, it takes a couple of hours. There were about two to three days of that.

Then you get two rest days. It was during those two rest days when I felt so exhausted and drained and couldn’t eat anything.I was in bed for those two days. 

Describe what happened right before the T-cell infusion

I had a really early morning appointment. I remember waking up and it was still dark outside. It was cold, because it was March. My parents drove me. I got my own room and as soon as I walked in, I was like, okay, let’s get this over with.

Even when I went to check in before I got to my hospital room, I couldn’t even stand up for more than a couple seconds. I had to hold my mom’s hand and arm, and walk.

When you’re admitted, they take a photo of you. I had my hat on. I had my glasses on. They took a photo and I still have that photo, it’s in my records. I look dead.  That’s exactly how I felt. 

I just walked to the room. The sun was finally starting to rise. It  was a pretty good, spacious room. But I saw a bag on my bed and I was like oh, it looks like a goody bag. I thought it was from the hospital. But actually when I asked the nurses they said it was from a former patient. I was like wow, so sweet.

I looked into the bag. It was so special to me. I opened it and there was a note from a former patient who was in that unit a year prior. It said, “Hey, we’re wishing you the best. I’m doing well now a year later.” 

There’s a gift card, blankets, tooth paste, all these goodies. Honestly, it didn’t even matter what was inside at that point. That note was more than enough. It was what I needed. It was everything to me at that point.

I latched onto it and was like, wow, this is amazing. I was like, I’m going to do this. I’m going to steal this idea and do this when I’m out of there.

It gave me the hope and motivation to keep going. That also gets into what I’m doing now. That gave me so much motivation and inspiration. 

Describe the actual CAR T infusion

The CAR T infusion was so uneventful, which is a good thing when it comes to cancer, it was so uneventful. I just saw there on my bed, they give you some candy to suck on because there is a weird taste.

There’s some kind of preservative to keep the blood fresh, which is strange to think about, but there may be some weird taste for some people. So I’m sucking on candy just sitting there, my blood is coming back to me, I’m feeling fine. 

There happened to be a student who just decided to join in because CAR T was and still is a very new thing. So they like to have students in whenever possible to witness the whole situation.

Poor her, nothing happened. I’m just sitting there just chatting with her. She was probably my age or younger. It was a really pleasant conversation. 

So I think that conversation with the care package, those combined just made me feel like I had a 180. I was a completely different person. I had felt miserable, terrible, dead going in. But the whole process ended up being not as bad as I thought and totally fine. 

How long was the infusion

I think it was even less than an hour. It really wasn’t that long. For the rest of the day and the time, it’s just a wait and watch. What will the T-cells do to your body? 

After CAR T-Cell Therapy

Recovering from the CAR T infusion

They do tell you to expect a fever after a couple of days and that you may experience some neurological toxicity, meaning you might not recognize who you are or you might not recognize what’s going on in life because your T-cells are doing their job. They’re attacking not just your cancer cells, but some other cells in your body. 

The first four or five days were like nothing happened. I was just staying in the hospital, feeling fine. I had some side effects from the chemo I received a few days before, but otherwise, I was okay. 

What sent you to the ICU

It was on the night of my birthday, I turned 26, it was midnight. I remember waking up and vomiting multiple times, just feeling terrible. The day or two before I did start having a small fever, but it was manageable still. It was like, okay, it’s starting. So I expected this, I knew it. 

The fever was getting worse but it was fine, it was nothing compared to chemo. When it really got serious it was when I started vomiting and it just kept coming. They gave me some meds to control it but the whole experience was just, wow, it’s getting serious. My memory was also starting to go. 

All I remember is that they told me you’re going to be transferred to the ICU. Before the infusion, they had said you’re most likely going to be in the ICU.

So the things they tell you before to prepare you are terrifying but at the same time, I’m thankful they told me because I know if I’m going to the ICU, it’s fine. They know how to treat this.

It’s not like I’m in a clinical trial where I’m going to be in this thing that’s unexpected and they try whatever. They have a standard procedure where if you have a fever, we’ll give you this. If you have neurological toxicity and you have to go to the ICU, they’re going to give you this. 

I ended up staying there for two days. I don’t remember most of it because I did have that extreme reaction where throughout this, they have to test you so you have to write your name and where you are on a piece of paper every couple of hours. When you’re in the ICU, you have to write it every single hour. 

Looking back on my sheet, I remember my sheet was totally a mess. I couldn’t even write beyond “my” and it was a bunch of scribbles. It was crazy. 

Some people have no symptoms and some people have to stay in the ICU for a couple of days. For me, it was in the middle. It wasn’t a serious reaction but it was serious enough  to go into the ICU. After I was out and back into my room, I was feeling okay again. I felt normal. I was doing a puzzle that my sister had sent me for the rest of the days and I was just really anxious to get out.

»MORE: Mental and emotional support when leaving the hospital 

Recovering at home

I was just relieved at that time because I think any hospital stay is just not really welcome. You usually don’t want to stay in the hospital, especially when your parents are there. My parents rotated their shifts to stay with me. They could not leave me alone, which was a good and a bad thing.

They would bring me home-cooked meals, which was amazing, because hospital meals are not that great. I would order them but give them to my dad. My mom would cook the actual meals I would eat, which was really amazing.

I honestly would have lost a lot more weight if it weren’t for her meals because I was hardly doing any activities through my stay. I would maybe take some walks around the ward.

I was in the same ward as the stem cell transplant people, so it’s extremely isolated. This was pre-COVID and you couldn’t go in and out without wearing a mask. You had to be very careful.

Just being out of the environment was super relieving because I didn’t like to be checked every couple of hours. I had to be given meds every couple of hours. There’s a constant beep of the machine. 

The hospital noises are just not very comforting, not a good environment for sleeping or getting any rest. It was really relieving to be back home. 

I just remember the couple of weeks after CAR T, I was really exhausted. I was fatigued. I would just stay on my couch and not really do much. I didn’t have any energy but I didn’t feel any worse than that. I was able to take some walks and get some fresh air but other than that, I wasn’t able to do much. 

How were you feeling before the scan after CAR T

Mentally, I was just glad I was alive. Whatever happens, happens. I felt good so I didn’t go in expecting doom. I remember sitting in that room with my parents right before the scan results came back and the doctor was really busy, but his fellow briefly stopped by to give me a thumbs up or to say it’s good.

I was like, oh my God. We had a mini freakout before the official confirmation that everything was good. We were just like, this is amazing! I remember taking a picture of my parents because they were like thumbs up!

So the oncologist came and officially confirmed, it all looks good. That was the biggest relief of my life, especially given everything that had happened.

It felt amazing.

Processing news of no evidence of disease (NED)

I just remember feeling very happy and couldn’t think much more beyond that. That’s great news! I’m not going to think about anything else. 

Reflections

Talk about survivorship

Throughout this journey, every little good thing or good news is just an accomplishment in itself. I knew that it still wasn’t over in a sense. Even still now, it’s not really over because I still have to go back for check ups all the time. I still have to get scans.

My upcoming one is in a couple of months. It’s  never a sure thing. That’s the part about survivorship. People say, yeah, it’s kind of like you’re done with treatments and you’re supposed to go back to real life?

But the reality is for me, I’m always thinking about it still. Any little pain, any little medical concern, I’m thinking it’s cancer.

I try not to get too depressed or think too deeply into it, but that thought really does come up a lot, especially with my relapses.

If I hadn’t relapsed, if everything went well the first time around, things would look a lot different. I’d be grateful but not this grateful.

There’s varying degrees of gratitude and at this point, I don’t even know how much gratitude I can express but everyday is a blessing. It’s ironic and a cheesy cliche but it’s true, sometimes I think I can’t believe I’m still here and that I can do what I do. It’s a lot. 

How did cancer impact the relationship with your parents

It drew me closer to them, especially because they really accompanied me to every single appointment. Not only treatments, but the check ups, scans, and everything. And they still have their jobs.They’re business owners so they’re able to be more flexible with their schedules and come with me when they need to.

Especially with my mom, she was the primary caregiver. She had to help flush my Hickman line every single day. She had to cook my meals when I wasn’t able to. She had to make sure that I was staying hydrated, staying in bed. I took her back to taking care of  her daughter. 

It wasn’t too long ago where she had to be in that role, in terms of me being a kid in high school or something. I had just graduated and I had only been working for maybe a year or two at that point.

She and my dad both hid their emotions really well for me and so of course, it was hard on them, but they were so strong for me, which I really respect and admire.

It definitely brought us closer together because with any health or life event, this is something that really makes you rethink your values and your priorities in life.

Maybe that minor fight with someone or this minor habit that you’re annoyed with about your mom, that’s nothing compared to what they’ve been doing for you and what we’ve been through together. 

Advice for others in getting support during treatment 

The main one was transportation. I couldn’t imagine driving myself to and from treatments. That was the main thing.

Being there to take care of me in terms of being fed. There were some days where I couldn’t take care of myself, at all.

They had to give me my meals or try to feed me if I could have an appetite. Made sure I was generally okay, not in pain. If I needed anything, they would just be there for me. It’s important to just have someone you know you can call on the phone or down the stairs, I need you. 

My huge mental support at the time was my boyfriend at the time, now my husband. We were actually long distance. We met in Taiwan, not during my fellowship in Taiwan, it was the year before that. It weren’t for him and FaceTiming him every single day, I don’t know how I would have gotten through what I did. 

Sure, I could call my sister, but she was also technically long distance in Los Angeles. Yeah, I had friends and they would reach out to say if there’s anything I can do, let me know. But of course, it’s what can I really ask you to do?

That’s nice of you to say that and I really appreciate it. I think just having people reach out is better than complete silence, especially from friends who you thought were friends.

There are some people who will definitely ghost you because they just don’t know what to say. Maybe some people have never been affected by cancer in any way, which is amazing, so they just have no idea what to say.

For me, some people reached out, but I didn’t really rely on any friends as much as my boyfriend and parents. They were the ones I could really rely on just for that mental and physical support. 

How did you power through the bad news throughout treatment

It’s always a struggle, even if you have good news. Cancer is just something that enters your life and never goes away. For me, I try to rely on the smallest things to give me happiness or hope. 

My sister had just gotten a new dog so I would ask her to send me photos and videos. I’m a huge dog person so that was enough for that moment. They also surprised me. After my first relapse, they surprised me by flying over here with their dog.

I remember waking up in bed, I heard some scratching on the door. I’m like, oh my God, did my parents buy me a dog? So I opened the door and the dog comes in and flies and hugs me. It was the  most amazing moment. 

Just finding the little things that have always given you comfort, just seeing that, but also finding new things.

The new thing that I discovered throughout all of this that mentally gave me a lot of energy and required little energy of me was watching YouTube videos.

Watching mukbangs which is when people just eat in front of the camera. I never thought I’d be interested in that, but when you have no appetite and you can’t eat, yourself, you kind of want to watch other people eating. That’s entertaining and it requires zero brain energy!

I’m laying in bed watching this and like yes, this is entertaining and this is enough for me. So discovering things you never thought would be interesting like videos, dogs, Instagram, anything. 

It was also having my boyfriend there, knowing he was there to talk to me. Our conversations weren’t even about cancer. It was about literally anything else, like his life, things going on in the news or in his family, my family, anything else.  Try to distract yourself with as many entertaining things as possible. 

I found taking walks was also very helpful, if you’re able to.

I tried to walk with my mom as much as possible. When my boyfriend came, we would try to go for long walks, taking it slow. I’m not trying to go hiking. Just go step by step, day by day.

You created a non-profit to pay it forward

I basically saw that care package and said I needed to pay it forward. It was something that I thought was so kind.

I had to go back to school though after I found out I was in remission from CAR T. So I was focused on school and then my last semester was this past spring. I decided to try out some entrepreneurship classes and try to develop this idea, because I wanted it to be more than just an occasional thing where if I have the time I’ll come up with the care package to give to the hospital.

I knew this was a need because throughout my years of experience with the hospital, I knew there was so much lacking, especially for young adults like myself and younger people in general. It’s like you’re give a binder full of information and expected to read through that, or somehow rely on that for all your information and all your needs. 

Nutrition, look at page 75. Flip to that tab. I got so many of those binders, too, because I had met with so many people. I had to go back through all that. They’ll just give you all that information and it’s not helpful. Not inspiring, not hopeful. But that care package was.

So this last semester I decided to speak with a lot of professors and mentors to develop this into what it is now. Now it’s a non-profit, officially registered. What I’m trying to do is essentially make hospital drop-offs but also ship kits to whomever needs it.

In doing this research and trying to figure out how to make this sustainable, I did consider options of selling these kits and other companies do sell their kits or similar care packages.

But for me, the idea of selling to cancer patients just rubbed me the wrong way, especially when you have so many other things to worry about. Not everyone can afford even just a 30-dollar kit.

So I knew from the beginning I needed to make it accessible and so now I have these kits where I base it on my own experience, what I needed. I needed lotion with no fragrance because my skin was sensitive, but I also needed sunscreen because chemo affects your skin in other ways, making it sensitive to the sun. Also, lip balm. Just basic things. A reasonable water bottle that would make me want to drink water and keep myself hydrated. 

Little things that I knew that were useful for me that I knew I needed to include in this kit. So it changes every month but right now I’m still shipping kits every week. I try to do two hospital drop-offs every month. It’s pretty much a full-time thing. I’m sourcing things, I’m speaking with suppliers, speaking with hospitals, doing a lot as a one-person operation. 

It’s a lot but I knew this mission to essentially bring smiles and also solidarity to those affected by cancer is something that’s so important to me because it’s such a lonely journey. You feel you have your friends and family there but to be honest, nobody’s really going to understand what you’re going through personally.

So I wanted to make sure through this kit, I’m able to provide essentials people actually need and also let them know there is hope. I’m here. I went through all this and I want to let you know I’m here rooting for you, and you can do this.

→ Learn more about Kits to Hearts here


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