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Cancers Chronic Myeloid Leukemia (CML) Leukemia

Michele’s Chronic Myeloid Leukemia Story

Michele T., Chronic Myeloid Leukemia (CML)

1st Symptoms: Trouble breathing, rash, bruising

Treatment: Sprycel and Bosulif

Michele’s Chronic Myeloid Leukemia Story

Michele, an active dancer and traveler, brushed off her symptoms until she received a surprise CML diagnosis.

Michele shares her journey, including first symptoms, researching treatment options and regularly draining fluid from lungs.

A huge advocate for other CML patients, Michele also discusses creating a blog to share her story, living life to the fullest with chronic cancer and the importance of advocating for herself.

Thank you for sharing your story, Michele!

  • Name: Michele T.
  • 1st Symptoms:
    • Bruising
    • Struggling to breathe
    • Rash
  • Diagnosis:
    • Chronic Myeloid Leukemia (CML), Ph-positive
  • Treatment:
    • Tyrosine kinase inhibitors (TKIs)
      • Sprycel
      • Bosulif

1st Symptoms and CML Diagnosis

Introduction

Tell us about yourself

I’m a wife, a mother and a grandmother. I love all of those roles, love my kids, love my grandkids. My husband and I have hobbies. We dance, and we like to travel.

We do ballroom, country, two-step, waltz and cha cha. As a matter of fact, I was dancing two weeks before I was diagnosed with leukemia and just ragging my butt. I just love to enjoy life, and I love my family and my friends.

Helping other CML patients is another passion of mine. I write, knit and crochet.

What were your first CML symptoms?

Honestly, I had probably every symptom of leukemia, and I explained away every single one. 

I was dancing in Nashville at the world competition in January. I was winded, and I was tired, and I kept asking what the elevation was. Why couldn’t I breathe, and why was I so tired? 

That was a symptom, but I didn’t realize it was because I had leukemia. I just assumed it was because we had worked so hard to get there. So I had that. 

I had bruising, but I thought, “Oh, you’re clumsy. Stop running into things.” I had these massive bruises. I didn’t think anything of it. I had spots, kind of like a rash all over my body. Once again, I checked for bedbugs, washed the sheets, changed my laundry. 

I did all these things. Every single symptom that I had, while it was a symptom of leukemia, it just seemed like it was a common thing that could be happening. 

The night sweats got me a little concerned because I would wake up soaking wet. I had already been through that time in life, and I thought maybe my hormones are wacky. Just night sweats, profusive sweating. 

He says, ‘Your white count’s over 385,000. Normal is 4 to 10. I need you to go straight to the emergency room.’

Probably the biggest one was I had an uncomfortable feeling under my left rib cage. I kept telling my husband at night when I was reading, “Oh my God, things just don’t feel like they fit the same in here anymore. I don’t know why I’m so uncomfortable.”

All of those things. I began to get a little concerned and still didn’t really think something was wrong.

Why did you go to the doctor?

I had an eye appointment for glasses, and my optometrist started asking me these questions. 

He was like, “Do you have high blood pressure?” 

“No, I have low blood pressure.” 

“Do you have anemia?” 

“No. What’s wrong? Why are you asking these questions?” 

Basically, he said that there were capillaries that had burst inside my eyes, so he was concerned. 

I was like, “What does that mean? Am I going to go blind?” 

“No, you’re not going to go blind,” he said, “but you should have it checked out.” 

That was just another one of those things. I got through the competition, and I got home. I had my regular checkup with my gynecological hematologist. Years before, I had borderline ovarian tumors. In the back of my mind, I was kind of thinking that maybe this uncomfortable feeling in my abdomen might have been those tumors coming back.

They’ve always said they could grow back, so that is where my mind went. I went and I told them, and I explained all of these symptoms. He was like, “Well, let’s do some blood work and do a CT scan tomorrow.” That’s how it all began.

The CML Diagnosis

Blood work results

I ran across the hall, and I got blood work. It was actually after 5:00. I got in the elevator. It’s kind of a funny story. This doctor got in behind me, took one look at me and said, “You okay?” 

“Yeah, I’m fine.” 

“Are you sure you’re okay?” 

“Yes, I’m fine.” I was thinking to myself, “What do you mean, ‘Do I know’?”  

He got out. I got out, and I went to my parents’ house to spend the night. I got up in the morning. The phone rang at 8 a.m., and it was my oncologist. 

He said, “Michele, I don’t know how to tell you this, but you have leukemia. I need you to go to the emergency room. I have a doctor waiting there for you.” 

“Wait, what? No. What do you mean?” It was so far removed, so shocking. I was in the bathroom, actually, brushing my teeth. I was standing there, looking in the mirror with the phone in my hands going, “How do you know?” That was my first question. “How do you know?” 

He said, “Your white count is high.” 

“How high?” 

“Astronomically high.” 

“What does that mean?” 

“Your white count’s over 385,000. Normal is 4 to 10. I need you to go straight to the emergency room.” 

“Well, can I drive myself there?” 

He said, “I really would like you to get a ride. We’re afraid your brain’s going to start to bleed.” 

About this time, I’m thinking to myself, “Yeah, better get dressed. You better just get up.” I went and asked my dad to give me a ride to the hospital. I was like, “Apparently I have leukemia.” 

»MORE: Reacting to a Cancer Diagnosis

What happened at the hospital?

I got there, and they were waiting for me. They put me right into the ER, and I was in there for about an hour. They ran some blood work, and the curtain opened up. Who’s standing there? That doctor from the elevator. I said, “It’s you,” and he said, “It’s you.” 

He said, “I didn’t think you looked okay.” 

I said, “What was it about me?” 

He said I was very pale and just looked sick.

It’s in those wee hours of the morning when nobody else is around that, I think, the gravity of the situation actually hits you.

It was just crazy. Of course, at that time, I didn’t know there were many different types of leukemia. I knew nothing about leukemia. I knew it was a blood cancer, and that was it. This was 11 years ago, so I didn’t have a smartphone, I didn’t have an iPad, and I didn’t have a laptop. I had nothing. 

I kept bugging the nurses to put in leukemia. I was like, “I know you can print this stuff off for me.” Fortunately, it was right across from their little station there, and they just kept printing up information for me for leukemia. I started reading all this stuff. “What do I do? Am I going to live? Am I going to die? What next?”

When did you start processing that you had leukemia?

It probably wasn’t until I actually was in my room and left alone. You just look in the mirror, and you just kind of go, “Cancer. I have leukemia.” I probably did that. I probably still do that, to be perfectly honest with you. 

It probably wasn’t until I had to tell my children and make that phone call that the gravity of the situation actually hit me, because at first it was just like, “What do I need to do? This is where we are. This is what I have. Now I need to fix this.” We’re women, right? We fix things.

It was like, “What do we do? Where do I go? What’s next?” You kind of stay on autopilot for a while. As I did the bone marrow biopsy and the different tests, and they get the complete diagnosis of what type of leukemia and all of that, now you’re starting to feel really sick. It’s in those wee hours of the morning when nobody else is around that, I think, the gravity of the situation actually hits you.

What is your advice for someone undergoing a bone marrow biopsy?

I would say under no circumstances let them do it without sedation. My first one was without sedation. I balked a little, not loud enough. It was, in my opinion for me — I had really hard bones — pretty brutal. I would say use sedation. My second bone marrow biopsy, my doctor was like, “Of course we’ll lightly sedate you,” because he felt it was barbaric to do it otherwise.

I’m pretty good, but let me tell you what. They came in, a big guy and a little guy, and I’m like, “That one’s to hold me down, and you’re the one to do the thing.” 

He’s like, “Pretty much.”  Had I known what I knew, I would have just said no. It’s easier for them to just do it as opposed to having an anesthesiologist or somebody else there to have to monitor you more closely than they do otherwise. 

It’s easier for them, but, we got to remember we do have rights and we can stand up for ourselves. I tell you what, that made me go, “I’m standing up for myself from here on out. I am never going to let that happen again.”

Can you explain the leukapheresis process?

I made them explain every step of that process long before I let them touch me. They put it into your jugular vein here. They follow it through an ultrasound as they’re putting it in. It’s more uncomfortable, probably, than painful. 

It’s probably similar to a port that many people get when they have cancer. The tube sticks out of your neck where they connect that to, and they take the blood out and they return it. 

Like I said, it was uncomfortable more than anything. It actually goes right into your heart. It’s just a little freaky, so having to think about that. They were good. I asked lots of questions and made them explain everything very thoroughly before they started.

It’s a little daunting thinking you’re going to have cancer the rest of your life, and some people will refer to it as ‘good cancer.’ I don’t think any cancer is good.

I had the catheter for almost five days. Five days, I believe it was. They took it out after they finished the treatment. The leukapheresis, I had that for, I believe, four days in a row. It takes hours. You’re pretty much hooked up to this machine, and somebody sits and watches it. I guess it’s centrifuges out the white blood cells. 

You’re there, and you’re just kind of stuck there in the bed. They do it for several hours a day, and then they come back and do it again, because I guess it has to be done more slowly. It can’t be done all at once. I had that for like five days.

Receiving the full CML diagnosis

Mostly what changes was now I had something I could actually read and understand. I knew exactly. Instead of it being vague leukemia, I knew it was this type of leukemia, so I researched that. 

At that point, my husband had come over to Palm Springs, brought my computer, and so I was able to sit up and read and try to understand what it was I had, what it meant, what the treatment was, what the complications could be and that sort of thing. That was helpful, actually, knowing that. 

On one hand, finding out that the type of leukemia I had was chronic, meaning I would have it the rest of my life, versus, “Okay, I have cancer. I’m going to have treatment, I’m going to ring the bell. I’m going to go home, and I’m going to be done.”

It’s a little daunting thinking you’re going to have cancer the rest of your life, and some people will refer to it as “good cancer.” I don’t think any cancer is good. I’m like, “Fine, you think it’s so great? You take it. I’ll just not have it.” They don’t realize the gravity of it. 

As time goes by, you’ll see people five years later, and they’re like, “Oh, you’re doing so well, blah, blah.” You’re like, “I still have leukemia,” and they’re like, “What?” They’re confused because cancer is not supposed to last forever. That was a little bit of a hard pill to swallow. Forever’s a long time. You hope it’s a long time, anyway.

»MORE: What to Say to Someone With Cancer

Medication and Next Steps

Taking lifelong medication for CML

When you’re on a medication, one of my biggest concerns was, here I’m going to be on these strong medications. It’s like an oral daily chemotherapy that you take every day for the rest of your life. 

You’re like, “Okay, so what’s that going to do to my heart? What’s it going to do to my liver? And what’s it going to do to my kidney? What’s it going to do the rest of my body? And am I now at greater risk of other cancers, which appears to be fairly common, people getting other cancers that have CML? Is it going to damage my heart muscle?” 

Chances are I might not die from CML, but I might die from the treatment, which also happens with other cancers as well. A lot of times it’s the treatment.

How did your doctor discuss the next phase of treatment?

He basically said that he was using the leukapheresis and the cytarabine to bring down the white cell count quickly. There was concern that there is what– the third stage of CML is called blast crisis, which in many cases in the past meant 100 percent a bone marrow transplant. 

Now they have come up with certain different TKIs that seem to get people out of blast crisis and back into a more chronic phase. At that time, it was, “Are you going to need a TKI, which is the oral medication, or are you going to need a bone marrow transplant?” His main concern and goal was to get me to a stable position before trying the medications.

Why did you decide to get a second and third opinion?

I realized that there were hematological blood cancer doctors that specialized in different types of leukemia. I quickly became aware that there were people that specifically worked with CMS patients. 

My thought process at the time was “I want to see someone who sees other CML patients so they will have something to compare to, versus someone that only sees it once.” There’s a really good chance that a hematological oncologist will never see a case of CML. 

At the time, there were, I think, 10,000 people living with CML is all. It was rare because ten years prior to that, people died quickly. Now we have a much larger community, I think maybe 100,000 people. It’s a rare cancer.

 City of Hope

I knew that, so I called City of Hope. They had CML specialists. I was living in the L.A. area, so it was closer to home. “Maybe I should go here,” I thought. 

I went there, and I was mesmerized by the size of that. They call it City of Hope, and it is a city. It is huge. It is run like a well-oiled machine. You go in, you meet this person, you get the badge, you get the bloodwork, and you get sent over here. They do this. They do that. It felt very methodical. 

The doctor was very thorough, and she was on board with the treatment from the doctor that diagnosed me. She was on board with that, and she agreed with the treatment. 

Nobody knows your body more than you. They see you for a short period of time. You live with you every day.

She said, “We just want to do weekly blood draws and make sure. This will be for several months, and then come back and see me in a month.” I did do that. I saw her a second time, but I just didn’t feel like we had a connection that I wanted for the rest of my life. With CML, it’s the rest of your life. 

I felt I needed somebody that I could talk to. Somebody that would listen to me, somebody that would answer my questions, somebody that wouldn’t get impatient, somebody I could reach when I was scared or had a question. I needed all those things. 

Having a personal connection with your doctor

I made another appointment, and I ended up at UCLA. Two minutes into that conversation, I was like, “Okay, this works for me.” I went as a third opinion, and he was very conscientious of not trying to say, “You should come and be my patient” at all. 

He looked at it as a third opinion and pretty much agreed with the treatment. It was a connection for me, and so I switched doctors to go him.

I think it was just bedside manner. He was comfortable, and he was like a human being. He wasn’t like the person that most people think of as a doctor. Doctors are human beings. They are no different than you and I. 

They have a degree. They’re practicing medicine. They call it practicing for a reason. They don’t know everything. Doctors can’t predict everything. They are human beings, and different people work and connect better with some people than others. Other people need different types of communication, and I needed somebody to meet me on a personal level. 

I needed somebody to consider that what I was saying was important. Whether it was silly or not, it was important to me. He didn’t make me feel like it was frivolous or stupid or whatever. He met me on a personal level. For me, that’s important. I don’t want to feel like my doctor is this person on a pedestal who I can’t communicate with.

Nobody knows your body more than you. They see you for a short period of time. You live with you every day.


TKI Treatments for CML

What treatment options were presented to you?

I was still in the hospital, and I was getting close to the 100,000 white cells, which meant I could be going home shortly. My doctor actually came and told me that I would be leaving and I would be on a medication. Pretty much what he said is, “You will be on a pill for the rest of your life. It’s a very small pill, but it costs a lot of money.” 

I’m like, “Okay.” I said, “What’s the name of that pill?” He told me Gleevec. I said, “Is it the only option for CML?” 

He said, “No, there’s three, but this is the one that people usually start with.” 

I said, “Could you tell me what all three of them are, please?” He told me and rattled off the names. I didn’t understand, so I’m like, “Write them down.” He wrote them down. At this point, he was a little exasperated and kind of maybe a little bit annoyed that I was questioning him, and I didn’t really care. 

Researching options

I wrote them down, and I looked them all up that night. What I found was Gleevec was the first TKI. It was invented, for lack of a better word, by Dr. Druker. It saved so many lives. It was great in that regard. 

They came out with the second one. I’m like, “Ooh, they came up with the second one, so maybe better.” I started researching that one, and that’s called Tasigna. I found that you had to fast an hour before, two hours after, twice a day. That alone, I was like, “That probably won’t work for me.” 

It also had a black box warning. When I looked that up, it was cardiac issues. I take black box warnings on medications extremely seriously after having a really bad reaction to an antibiotic with a black box warning that no one told me about. I kind of could scratch that off. 

Then Sprycel was the third one, and the data on it seemed to say that people reach the milestones that they expect you to reach for CML for the best long-term outcome quicker than on Tasigna or Gleevec. For me, I’m like, “Why wouldn’t I want to start there?” Sprycel seemed to have better data regarding reaching milestones and long-term success, I guess, for lack of a better word. That’s the one that I wanted to start on. 

»MORE: Targeted Therapy

Starting Sprycel

When my doctor came in the morning, I told him that, and he said that people usually started with Gleevec. I said, “You said, ‘Usually,’ so what do we need to do? I want to start on this one.” He somehow sent in his assistant, and she got a seven-day free trial at the pharmacy. They got me on the patient assistance program, and I started on Sprycel. 

It was once a day. Typically you start at 140 milligrams. I guess 100 is fairly normal also. I questioned the dosage based on my thinking, which was why would I at 110 pounds, take the same medication that somebody that’s 300 pounds? Shouldn’t it be geared more towards body size, as opposed to just “This is what you do”? 

I was opting for a lower dosage to see if it would work, because of the longevity of having to be on a medication that could potentially damage the rest of my body. We agreed on 100 milligrams, and that’s what I started on. 

Taking the first pill

I took the first pill when I got home to LA, and you read all of the possible side effects and things that could happen in adverse reactions. It’s just scary. I literally looked at that pill and I’m like, “Oh man, what do I do? Okay, over the lips.” I took it, and I just sat there waiting to call 911 in case something horrible happened, which it did not.

You want somebody with actual true experience.

It gave me a terrible headache. I felt like I had the flu. I had to go to bed. It took me weeks and weeks to adjust to it. Part of that, it’s like, “Is this the pills? Is it still just the leukemia?” You just don’t know in the beginning. You just don’t know. 

I just had to say to myself, “Self, you have cancer. You have leukemia. You are sick. Be kind to yourself. Rest when you need to rest, and do whatever it is you need to do. Do your weekly blood draws. Take your medication.” 

White cell count dropping

What ended up happening — and often happens in the beginning — is that it will absolutely tank your white cells, and your white cells are what fight infection. I went from 385,000 to 900, and I couldn’t figure out why I felt so sick. I felt so sick because I had 900 white cells. They called me once again, and they’re like, “Come to the emergency room.” 

They gave me a shot of Neupogen, which stimulates the growth of white blood cells, which also causes more bone pain than you already have and all of those other things. I had to have several injections of those to get it stabilized, and then they hung probably at about 3,000 for probably three years. They’re currently around five, so that’s good. 

I was fortunate. I did not get other illnesses, and I didn’t get sick. Of course, I didn’t go anywhere, so I wasn’t really exposed to germs. All in all, I am a pretty healthy cancer patient, so I’m fortunate for that. 

The other thing I did want to say is that I feel like it’s really important if you have CML to see a CML specialist. What I mean by that is somebody who sees more than just you. You want somebody who sees lots of CML patients so they can say, “Okay, this happened to this person. This is common. I see their white cells dropping below 4,000, and this is what I did. This is the result I had.” 

You want somebody who has knowledge and experience with things like that, so they know what to do and they’re not just going to the internet. I do that, and then you tell them what to do. You want somebody with actual true experience.

Side effects of Sprycel

I was on Sprycel for six years. In about year five, I started developing a small pleural effusion in my left lung.

In the beginning, Sprycel clearly gave me headaches, which I took Tylenol. They felt that that was the most compatible with the Sprycel. Sprycel can also cause your blood to become thinner, which ibuprofen can even make that happen even more so. Tylenol was the drug of choice for headaches. 

I had terrible bone pain. I had pain in my hands. Everything I picked up, I dropped. My hands would burn at night. They ended up saying it was neuropathy. They kept saying it wasn’t from leukemia, it wasn’t from the Sprycel. I kept saying it absolutely has to be. I don’t believe that it’s anything else. 

»MORE: Side Effects of Cancer Treatment

Dealing with side effects

They sent me to a neurologist. They did all the tests. All the tests were negative. They were absolutely convinced I had carpal tunnel. I did not. They finally agreed that it was the Sprycel. I would use Voltaren gel. I would try that at night for inflammation. That didn’t really help. 

I tried those compression drugs. That didn’t really help. I did try the Claritin for bone pain. That helped somewhat. Back muscle spasm, musculoskeletal pain. I used heating pads, I used Voltaren gel, and I used ice. 

There were some times that I was literally down two or three months, that I just couldn’t get up. Everything hurt so bad. Talk about boredom — you just get sick of your own self. You really couldn’t watch TV because you couldn’t focus. You can’t read a book because you couldn’t focus. Here you are with yourself on the couch. What do you do? 

I ended up teaching myself to crochet all these cute little animals for my grandkids, which aggravated my hands. It was like just no way to win. The neuropathy and the feet, where I could hardly walk. That went on probably for the better part of — I don’t know, it’s three years, probably, off and on. 

CML treatment’s impact on quality of life

It drastically changed my life. There was nothing that I could just say, “Ooh, next Tuesday, let’s go to a movie.” Never. Maybe I could go, maybe I couldn’t. They stopped inviting me, because half the time I had to say, no, I couldn’t go. I did not know from moment to moment.

With CML, because it’s forever, you just hope that eventually it will level out, and your body will adjust, and you will get to a better place.

Lot number correlation

I started writing down my symptoms daily. What I found was that my side effects correlated 100 percent with the lot number of drug that I took. Different bottles, every 30 days I felt different side effects. What I learned over time was, man, if you got a good bottle, it was a great month, and I could do more things. 

Because my drugs came from mail order, it had to come from a specialty oncology pharmacy. I would ask the person filling my order, “Could you look for this lot number?” when I got a good one. I had one person who would do it, and it was the best six months of my life during that time. 

For six months, I felt great, and then I got a crappy bottle and back down. It got to where you just didn’t know. You just didn’t know. I held out hope that eventually either they would come up with a better drug, or maybe a cure, or who knows? 

They call it a new normal. It’s just a new normal. It’s hard, because I was always fly by the seat of my pants, do whatever I wanted, whenever I wanted. I never, ever considered I might not feel good enough to do that. 

It never entered my consciousness that I would have to live with “How do I feel today, and can I do it? And I’m going to suffer if I do do it.” I would go dancing on occasion when I felt good. I was wiped out for two days, but it was worth it.

What helped you through the physical, mental and emotional strain?

I started crocheting little things for the kids to keep my hands busy, just to keep my mind focused, to learn something new. I started watercolor. Just different things than what I used to do. Just different ways to fill the time and the space that didn’t take a lot of energy. I can see how it would be very easy to become depressed.

My hair just grew out. I looked ridiculous. I didn’t care. I had cancer. Who cares? All of a sudden, you really just don’t care.

Michele’s blog

I started writing a blog to keep my friends and family informed as I learned about CML and what that meant and what my treatments were and what I was doing. 

I put it on a blog because when you get sick, people start calling, and it’s exhausting. My poor husband had to deal with all the calls because I didn’t have the energy or the emotional stability to keep saying, “I have cancer.” It was so hard. I told my children. It was the hardest thing I’ve ever done. 

I started writing this blog because as I learned, I wrote it down. My friends and family could read it, and they could understand what I was going through and how I was feeling at the time. That was really, really helpful. 

Back then, there weren’t so many Facebook groups and this and that and all this other things. There was very little on the web about CML at the time because people died, people got diagnosed older, they weren’t on the computer, all of those things. 

I started hearing from people all around the world saying how helpful it was. My bad days, I wrote about my bad days, and my good days, I wrote about my good days.

I just started sharing what living with CML was like. That gave me an outlet. People reaching out who didn’t have access to good care or were afraid to stand up for themselves. It helped me to help them. 

I never would have dreamed my life would become an open book ever in a million years. Anybody wants to know anything about me, just go read my blog, because it’s all there. The good, the bad and the ugly, all of it. 

»MORE: Breaking the news

Dealing with hair loss

My hair was just falling out in buckets. It is so thin right now. Even still, I barely have that much hair on my head. The other very interesting thing with Sprycel is: all of a sudden, I looked, and my hair was completely wiped. I had dark hair. My skin was extremely white as well. I went to my oncologist, and I’m like, “What’s up with this?” 

He’s like, “It’s the Sprycel. It takes the color out of your skin and your hair.” 

I’m like, “Oh my God, can I dye my hair?” 

He’s like, “Well, you already have cancer. It’s a bunch of chemicals. I guess you could if you wanted to.” 

I thought about that, and I just let it grow out. My hair just grew out. I looked ridiculous, but I didn’t care. I had cancer. Who cares? All of a sudden, you really just don’t care. My hair grew out; my skin was white. 

»MORE: Hair Loss and Regrowth

Heat and sun exposure

Another thing that happened, we were in Europe. There was a transportation strike in Rome, and we walked miles to get back to where we were staying. When I looked down, my legs were like hamburger. All of the blood vessels in my legs, bright red, just splotchy red. I was mortified. 

I took pictures and sent an email to my oncologist, asking, “Do I need to come home?” 

He’s like, “No, just try and stay off them for the next couple of days. It should be okay. If it gets like that again, just try and stay off of them.” 

We were getting on a cruise, so I was in a wheelchair for like four days. I got better, walked around. They were fine, happened again. Interestingly enough, I had three people come up to me and ask me if had cancer. I was like, “Yeah, why did you ask me that?” 

They’re like, “Your legs. My husband has cancer, and his legs are doing the same thing.” 

It was the heat. I couldn’t be in the heat at all on Sprycel. I couldn’t be in the heat. It couldn’t be in the sun. Apparently, all the capillaries would burst close to the skin from walking, so that was fun. 

Being out of the sun and the heat I had a chilipad. Those things are so fabulous. You wet them and put them around your neck, and they stay cool for hours. Now I’ve got a little fan, a personal fan that goes around my neck because I’m very sensitive now. Not as bad on the Bosulif as I was on the Sprycel. 

Pleural effusion

Probably the most dangerous side effect was the pleural effusion, which is where the sac around your lung fills with fluid. The first time I had it drained, they took two liters. If you know what a liter of soda is, that big bottle, two liters out of my lung. I walked out, and I’m like, “Oh my God, I can breathe. Who knew?”

That sadness gets you. It’s just that emotion. It’s just something that I miss within myself.

I didn’t really know at first. I kind of had a cough, and it was just annoying. It was like a dry cough. It did seem like if I tried to take a really deep breath, I just couldn’t quite get a deep breath. 

For the first year or so, it was controlled by going on Sprycel breaks. My doctor was like, “Let’s take you off for a week, for ten days, until the pleural effusion begins to clear. Then we’ll try you on a lower dose.” I was on so many doses of Sprycel. 

Losing a spark of yourself

The very first time I was off the Sprycel for ten days, on the third day I felt like me for the first time. It was like this little spark. 

My husband comes home from work, and he’s like, “What’s up with you?” I was literally giddy. I was happy. Not that I’m a sad person or a depressed person. Not that I’m a pessimistic person. I didn’t think any of those things. 

But this little spark of joy, I didn’t even realize I was missing it. It wasn’t until I went back on the Sprycel. I called it Sprycel sadness. It was like a dark cloud. It was like it just dampened who I was. 

If you don’t have the opportunity to go off and back on… I never realized it. I didn’t know that it made me feel duller, but it absolutely did that kind of stuff. So the Sprycel breaks were pretty great.

Living life

It’s hard to explain if you haven’t been there. It’s just a little tiny spark that’s missing. It takes something away that you didn’t even know you were missing until you have an opportunity to revisit it. It’s not like I sit around and mope and woe is me and I’ve canceled the rest of my life. 

I try to live my life to the best of my ability every day, because that’s why I take the medication, because I love life. I love my life. I’m fortunate. I’m blessed. I tremendously benefit, and there’s so many other people. I’m grateful. But there’s a tiny little spark that’s just missing, and I can’t even explain it.

If you think about it, it can make you a lot sadder than just a momentary moment of sadness. It just makes me teary. It’s like, my mother’s passed away, and I love my mother. If I think about my mother too much, it’s just that sadness gets you. It’s just that emotion. It’s just something that I miss within myself that you wouldn’t know if you didn’t know. Nobody around me would know.

Switching Treatment and Doctors

My doctor probably told me that I could switch for a year, and for a year I’m like, “No, I’m good, I’m good. I’ll just get my lung drained every couple of months, and I’m good.” 

Because what I learned is that when you get comfortable with something– and at that point, I felt pretty good otherwise or, so I thought. I’d adjusted. The hand stuff was sporadic. The headaches had kind of gone away. I felt like I had more energy than I had in the beginning, and all of those things. I felt like I had adjusted pretty well to Sprycel, and it was keeping my leukemia at bay. 

It wasn’t the greatest PCR results, but it was good. My doctor had said that it was good enough, that he thought that my prognosis was good long-term. I was comfortable with it, and I understood Sprycel. I knew Sprycel. 

If I switched, I had to make a choice between Tasigna and Gleevec. Neither one of those sounded better than what I was already on. Plus, if I gave up on that one, then I’d only have two more choices if I really got in trouble, my leukemia became out of control. 

What people don’t understand is that every three months, you do have to be tested because it can become uncontrollable at any point in time. I kept sticking with it. 

Draining fluid from lung

I even went to a pulmonologist, and they said there’s a procedure that they do that they can put powder between your lung and the pleural sac. It causes a scarring, and it causes the sac to stick to the lung, which then the pleural effusion can’t happen anymore. 

Then my thought went to “The fluid doesn’t go there. Where does it go? You have a sac around your heart. Oh, great. If I have to get pleural effusion, I don’t want it around my heart.” 

This went on and on and on, and I just started getting my lung drained on a fairly regular basis. I’m like, “Can they just put in a drain, and I can just bring it out every day?  I’m good with that.” They’re like, “That is an option if this continues.” 

Fast forward another year, and I had to have rotator cuff surgery. I had to have it drained the day before surgery. They checked me with an X-ray right before surgery. They had to drain it again that morning. What was supposed to be an outpatient surgery — they were already going to keep me overnight because of the CML — ended up a week in the hospital on oxygen, going home on oxygen for several months. 

Switching to Bosulif

I was like, “Okay, I think now’s the time to make a choice and to change.” At that time, Bosulif was an option. 

Its biggest side effect for people seems to be massive diarrhea. I travel. I like to go places, and I like to fly. I’m like, “I can’t have that. I don’t want to be homebound constantly.” I’m like, “Okay, I’ll try it.” Bosulif is known for that and nausea, so we pre-medicated with Zofran. 

My oncologist, being a CML specialist, said “Start on 100 milligrams. 400 milligrams is the desired dose. Start at 100 milligrams for a week. If you tolerate that well, go up to 200 milligrams. Give your body time to adjust. This drug is one of the hardest to start.” 

It’s rough. It is difficult. By the time I got to 300 milligrams, couldn’t tolerate it. The nausea was so bad. I asked, “Can I split it to 200 and 200?” 

“Yes.” All doctors that aren’t CML specialists will say no. They will give you a 500 milligram pill, start you out on that and can’t figure out why people fail the drug. It’s because they’re setting them up for failure. 

»MORE: Managing Nausea and Vomiting

Alleviating side effects

Anyway, between the Zofran, the Preggie Pops. I use those. My friend sent me those off of Amazon. They’re little sucker things. They’re called Preggie Pops. They use them for pregnant women. I did the pressure things for the motion sickness. The Zofran. 

What I found that works the best for me? CBD drops. No THC, just CBD drops. I start getting nauseous. Three drops under my tongue. I roll my eyes and go, “There’s no way this is going to work.” Works every time. It’s crazy. I cannot believe. Another cancer patient gave me her drugs when she finished her chemotherapy. I’m like, “I’ll try anything.” 

For me, it wasn’t the diarrhea, which is a good thing, occasionally. It was the nausea. I have way more energy on Bosulif once I adjusted. I can go out in the sun. My hair’s getting a little darker. It’s not as white. I have a little color in my skin. All of those things are good.

At one point, it had to be your second TKI. I don’t know if they will yet start people on it. I think they might, but I’m not sure about that. It was at the end of 2017, I believe, and my oncologist had five other patients who were on it and doing really well.

»MORE: CBD Oil for Cancer & Treatment Side Effects

The importance of preserving treatment options

It’s a little hard. For one, you get comfortable with what you’re taking, and two, you know you have these options. There’s always a chance that it might stop working altogether, which at that point, you have to go to another option. 

Fortunately for CML, they seem to keep researching and coming up with new options. They also have another one called ponatinib for people that have a mutation in their CML. So there are more options. They’re also coming up with things where they’re trying treatment-free people. 

It’s all of these things. You have to take all of these things into consideration when you’re choosing what is best for me at this moment, at this point in time. It is helpful to talk to other people. I have a Facebook group and my blog. I hear from other people and hear what their experiences are. Some are helpful. Some are just downright terrifying. 

People think, “You have CML. You’ll be fine.” Unfortunately, that’s not always the case. I’ve lost many people that I’ve met over the years with CML who have gone into blast crisis, who have had bone marrow transplants, who have had second bone marrow transplants, and they don’t live. 

A lot of people do get diagnosed routinely, routine blood work. Say they’re going for a new job, and they want to have a physical for whatever reason. They get diagnosed very early. They get treated very early. Their CML is non-detectable within six months. It’s great. But there’s plenty of people like me who don’t. 

For me, they pretty much said it’s never going to be an option for me to be treatment-free. Probably because I explained away all my symptoms in the beginning, and I was diagnosed further into the disease than many other people.

Why are you working with two doctors?

I was happy with my doctor in Los Angeles, and my husband retired and we moved to Boise, Idaho. When we were in Boise, we went to a dance event in Portland, Oregon. 

Portland, Oregon, happens to be where Dr. Druker, who developed Gleevec, practices medicine. I’m like, “Well, why wouldn’t I go see him?” He is like the Grand Poobah of CML. I made an appointment with him and loved him as well. 

I would see him once or twice a year. Then I’d see my doctor in Southern California once or twice a year. I fly once and do virtual once usually, but it works out for me because I do have family there, so I just use it as an excuse to go. Fortunately, I’m retired, and I can. 

I also feel like, if you need to fly and see a specialist, even nowadays, specialists will see you. They will establish you as a patient, and they will work with your local oncologist. It’s so worth it. 

I just want every single person who has CML to see a specialist, and it doesn’t happen. Those are the people that seem to not do well and actually have passed away. 

I see Dr. Druker. He sends me a blood kit. I have it drawn here. They ship it back to Portland. Then I’ll do a virtual doctor’s appointment with him.

Lessons learned

What advice do you have for others in your situation?

Honestly, I don’t think it necessarily ever gets easier. Somewhere along the line, probably five, six, seven years in, there came a time where I didn’t think about it every single day, like, “Oh, you have cancer.” 

Then the other problem with having cancer for the rest of your life, every ache and pain, you’re like, “Uh-oh, what’s that? Uh-oh, what’s that? Ooh, I hope that’s nothing.” That is not great. 

The one thing that I’ve learned more than anything is that you need to be your own self-advocate.

That’s not so much fun, especially in the middle of the night. I’ll say to my husband, “If I die tonight, it’s probably a brain tumor, and it’s right here because it hurts right here.” Or I say, “I got this over here. It’s probably that.” Just so people know.

Lingering anxiety

It puts you on edge. My logical self says, “Stop it,” but my brain is like, “Uh-uh.” It’s that little guy sitting on your shoulder. There are days where I go through a whole day and I don’t remember that I have cancer. 

Then I know I have to get bloodwork. The last blood draw I had, which is now four months, because the blood was compromised in transit and I had to redo it. It was the best one I had in like two years. It was so exciting. 

I’m telling you, every time I see a test result in my MyChart, I’m like, “Ugh.” I go, I get my blood drawn, we do a happy dance over it, we do good juju, and then they send it off. I have to wait a week or two, and then I see the test result pop up. 

I want to look, but I don’t want to look. Sometimes I look and it’s gone up, and I’m like, “Okay, it’s only gone up a little,” Then you’ve got to stress for the next three months, is it going to go up, stay the same or go down? 

Then I had a great one. I’m telling you, I was dancing. I was like, “Eeeh.” I was so excited. It was just like the best. So I put off getting my next three months for like three weeks because I’m like, “I just want to live on that really good one for just a little longer.” 

I finally do it three weeks late. It gets compromised in the mail. I have to redo it, so I’m still waiting for that result. I don’t know that it ever really gets easier. You just don’t know, unfortunately But nobody knows. Nobody knows.

The importance of self-advocacy

The one thing that I’ve learned more than anything is that you need to be your own self-advocate. You need to stick up for yourself. It’s important to understand what’s going on in your body. It may be scary, but I truly believe that not knowing is probably scarier. 

If you’re in the hospital, have an advocate with you. You’re too sick even to stand up for yourself. I feel like every single person that’s in the hospital, that’s going through anything, needs somebody there standing by their side and trying to do what’s best for you. 

Don’t be afraid to stand up for yourself. Learn about your diagnosis, learn what your options are, and fight for you. Fight for you. You know you better than anybody else ever, ever will. You just need to do that. It’ll make you feel good, and it’ll help.

»MORE: Advocating for yourself


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