Logan’s Hodgkin’s Lymphoma Story: Classical, Stage 2A, Adolescent (AYA) Cancer
Logan was diagnosed with Hodgkin’s lymphoma at just 15 years old. She talks undergoing chemotherapy and side effects, managing through hair loss, fertility preservation, and dealing with the experience of being an AYA (adolescent young adult) cancer patient.
- What were the first symptoms
- When did you go to the doctor again
- How did you deal with “scanxiety”
- How did you get the diagnosis?
- Describe how you processed the lymphoma diagnosis
- What were the next steps after diagnosis
- Can you talk about the fertility treatments?
- What was your chemotherapy regimen?
- What side effects did you experience from chemo
- Describe the hair loss after chemo
Don’t worry about drifting away from your friends. Some of them may be distancing themselves intentionally, but some of them just may not know what to do or say to help you.
They’ve never been in that situation, so they don’t know.Logan A.
What were the first symptoms
It was January. I thought I had slept weird. I was just feeling some discomfort in my neck. I never thought it would be cancerous. I told my parents I had this thing on my neck, and they said we should get it checked out.
My parents didn’t think it would be anything crazy either, but they wanted to get it checked out. The doctor asked if I was having any other symptoms, and I really wasn’t. I was tired quite a bit, but I just thought that was normal.
He thought it was a pulled muscle, but he said if it didn’t go down that I should come back in a few weeks.
When did you go to the doctor again
Nothing super concerning happened in the two months between visits, but I was on vacation with my family in March and I could see in pictures that the lump was really big still.
Everyone started saying, “That’s not a pulled muscle. You need to get some blood work or something.”
My parents are both doctors, so their friends are doctors. I went to one of their friends. They wanted to get an ultrasound and look at my neck. That’s when they saw all the lymph nodes.
How did you deal with “scanxiety”
I had an X-ray. That showed a mass in my chest. That’s when they decided I had to get a CT and PET scan because that was pretty “cancer-y.”
I used to be very scared of shots and all that stuff, so I was freaking out. It felt like it was taking forever. All the scans felt so long.
I really just didn’t want to think about it. I would just try to pretend I was fine and not think about it. My motto was “fake it ‘til you make it.”
Everyone else was freaking out, but I was just thought everything was fine and it was no big deal.
How did you get the diagnosis?
I had a surgical biopsy. The guy who did it was my dad’s friend, so we were able to get it done pretty fast. He went into my neck and pulled out a lymph node.
All the results came back, and the surgeon sent an email. My parents got the news first. My sister was on her way to the house, but they just went ahead and told me and told her later.
Describe how you processed the lymphoma diagnosis
In front of them, when they told me, I was okay. Then when I went upstairs and was by myself, I was able to process it. I freaked out a little, but I didn’t want anyone to know.
I didn’t want my parents to see me scared and make them more upset. It’s weird being upset in front of other people, so I was just trying to deal with it.
What were the next steps after diagnosis
I live in Houston, so we were thinking either MD Anderson or Texas Children’s. We met with the oncologist at Texas Children’s and I liked him so much that I didn’t feel the need to go to MD Anderson.
He told me all about the chemo I would be on, the side effects, and all that. He laid out all the days for me and told me everything he possibly could.
He also brought up fertility preservation and suggested I do that before I started chemo. Since it was 2A, Hodgkin’s, and I’m so young, he felt like I could take the time to do fertility treatments first.
Can you talk about the fertility treatments?
I had to get ultrasounds every other day. My mom had to give me four shots every night.
One of them hurt pretty bad. I did that for two weeks. I had egg retrieval surgery. They got a good amount. I think they got somewhere around 20.
It was really weird to be 15 and making decisions about kids. I didn’t know if I wanted kids or not. I figured we should just go ahead and do it. It was a lot.
I had a couple of breakdowns. I didn’t want to keep going, but I did it. Now the eggs are there if I want them.
What was your chemotherapy regimen?
I got my port placed the next day after my egg retrieval. That same day, I had my first round of chemo.
I was super nauseous that first day, but I didn’t want any meds. Then I threw up, and I decided I would go ahead and start taking medicine for that.
I was on ABVE-PC chemo. I did four 22-day cycles. I had infusions on days 1, 2, 3, and 8. I was inpatient for the first week of the first cycle to make sure everything went smoothly after getting my port.
Day 1 was pretty much an all day thing. I had five and a half hours of chemo plus other tests and meds. Day 2 was only a 30-minute thing. Days 3 and 8 were only about an hour and a half.
What side effects did you experience from chemo
Summary: leg pain, mouth sores, nausea
I had a lot of leg pain. After Day 8, I would get a G-CSF (granulocyte-colony stimulating factor) shot to help me make more blood cells, and that gave me bone pain everywhere. I talked to my doctor and was prescribed gabapentin. That helped a little bit.
I had some trouble breathing and a high fever on Day 8. They took me into the hospital and had to put me on Levophed. I was in the hospital for a week or so trying to get my counts up. After that happened during the first cycle, they gave me more Benadryl and antibiotics.
I had mouth sores so bad. I had a preventative rinse that worked pretty well, but it wasn’t helpful if I already had sores. For that, I had the Magic Mouthwash that would numb my mouth a little.
The sores made it hard to eat. I had a lot of trouble. I was on steroids for a little bit, and that would make me hungry. I would want to eat, but it was hard because of the sores, so that was rough. Bananas were fairly easy to eat. I ate a lot of honey because I read that it was good for mouth sores.
I had some nausea during the first week of my cycles, so I took nausea meds for that. That was the hardest week. It usually got better after that.
I had a lot of trouble sleeping, and my sleep schedule was messed up, so I was pretty tired all the time. I’m sure the medicine made me pretty fatigued too.
Besides hair loss, the pain was the hardest part because it just made it hard to function. It ruined my mood. It was unbearable sometimes.
Describe the hair loss after chemo
My hair started thinning and falling out after Day 8 of the first cycle. I knew I was shedding more, so I started Cold Caps. They didn’t work, so I stopped using them.
I didn’t get upset when I first found out I was losing hair. I was brushing it, and it started coming out a lot.
I just texted my mom and told her. She asked if I wanted to keep using the Cold Caps. I didn’t feel like they were going to work, so I decided to stop.
I tried to just stop brushing it, but then it got really matted. I had my sister brush it, and she filled up a whole grocery bag with hair. She got really upset and felt bad.
I was upset, but I didn’t want to think about it. I only had a couple strands left at one point, and I was just trying to hold on to it as long as possible. I didn’t shave it until I had lost it all.
I wish I was comfortable rocking my bald head, but I wore a lot of beanies. I was shopping one time, and I live in Houston.
This lady was like, “Why are you wearing a beanie in Houston?” I was like, “Oh, that’s awkward.” I don’t wear them as much now.
I barely had any eyebrows and eyelashes. I was bloated from steroids. My skin was breaking out. I just felt like I looked horrible. Every time I put my wig on, I hated it because it wasn’t my hair.
Who was part of your support system?
My sister, who’s in college, was supposed to work all summer, but she turned down the job to help me. She would hang out with me all the time.
All my friends did their own thing. I was upset, but I tried not to let it get to my head too much.
I didn’t have much support from my friends. They didn’t really text me or anything. It was really sweet of my sister to be there for me that way.
She was by my side the whole time. We played games to fight boredom.
She and my mom came with me to chemo and all that stuff.
How has the experience changed the way you view your friends?
It made me realize that if they don’t want to reach out and talk to me, I shouldn’t bother wasting my time with them. They do a bunch of teenage stuff, and I’m just like, “It’s not that important.” I have a strong support system with my family, so I just focus on that.
Finding a cancer community
I had so many questions. I would go look at blogs, but they would be written by people much older than me, and I couldn’t really relate to them.
I found a few people in their 20’s, but that’s still pretty different than my situation. I didn’t really find anyone in my same position.
I was reading through this website and others, and I couldn’t find many people my age.
I know how I felt during this, and I thought maybe my story can help someone else my age going through this.
What life lessons have you taken from this
I appreciate life a lot more. I try not to get sad. If I do, I try to pull myself together quickly. Life is too short to be upset over stupid stuff.
I also just try to be there for people because I know what it’s like to not have a lot of support from friends.
I don’t worry about silly things anymore. I focus on what’s really important.
What advice do you have for someone your age going through this?
Don’t worry about drifting away from your friends. Some of them may be distancing themselves intentionally, but some of them just may not know what to do or say to help you. They’ve never been in that situation, so they don’t know.
The hair loss sucks, but you get to try on cool wigs. Your hair will grow back. The life lessons you learn are worth it. You just have to get through this tough time.
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Helicon K., Hodgkin's, Stage 2A
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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)
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
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)
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
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
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)
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
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)
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)