Sponsored: Living With CML - A Podcast Interview with Brian Boyle

Brian BoyleI recently had the honor of interviewing Brian Boyle, a professional hockey player who is living with Philadelphia chromosome-positive chronic myeloid leukemia in chronic phase (Ph+ CML-CP). This episode is sponsored by Novartis, and Brian has been compensated by Novartis for participating. Brian's story is based on his experience with Ph+ CML and is not intended to be representative of others' experience. You can listen to the podcast interview or read the transcript below.

 

 

Emily Downward: Welcome to Living With, a podcast by Health Union that explores what it's like to live with a chronic health condition. Health Union integrates the power of human connection and technology, uniting people in the shared experiences of life with chronic health conditions. I'm Emily Downward. This episode of Living With is sponsored by Novartis. I had the honor of speaking with Brian Boyle, a professional hockey player, who was diagnosed with chronic myeloid leukemia, a type of blood cancer, in 2017. Brian's chronic myeloid leukemia, or CML, was Philadelphia chromosome positive in chronic phase.

In this interview, Brian talks about his treatment with TASIGNA® (nilotinib) capsules.

APPROVED USE
TASIGNA® (nilotinib) 150mg capsules is a prescription medicine used to treat:

  • Adults with newly diagnosed Philadelphia chromosome-positive (Ph+) chronic myeloid leukemia (CML) in chronic phase

IMPORTANT SAFETY INFORMATION ABOUT TASIGNA® (nilotinib) Capsules

QTc Prolongation and Sudden Death: TASIGNA can cause QTc prolongation, a possibly life‐threatening heart problem. QTc prolongation causes an irregular heartbeat, which may lead to sudden death. Call your doctor right away if you feel lightheaded, faint, or have an irregular heartbeat while taking TASIGNA. These can be symptoms of QTc prolongation.
  • Your doctor should check your heart with a test called an electrocardiogram (ECG)
  • Do not take TASIGNA if you have long QTc syndrome or low levels of potassium or magnesium in your blood
  • TASIGNA can interact with many medicines and supplements. This may increase your chances for serious and life‐threatening side effects. Do not take any other medicine while taking TASIGNA unless your doctor tells you it is okay to do so
  • Food and grapefruit products increase the amount of TASIGNA in your body. This may increase your chances for serious and life‐threatening side effects. Take TASIGNA on an empty stomach
    • Avoid eating food for at least 2 hours before the dose is taken, and avoid eating food for at least 1 hour after the dose is taken
    • Avoid grapefruit, grapefruit juice, and any supplement containing grapefruit extract while taking TASIGNA

Please see additional Important Safety Information below.

Please click here for the full Prescribing Information, including the Boxed WARNING, and the TASIGNA Medication Guide.

 

Emily: To start, tell me a little bit about yourself.

Brian Boyle: Well, my name's Brian Boyle. I'm from a large family, just South of Boston. I grew up a hockey player. I played professionally for 13 seasons. And I'm married with two young children, a five-year-old and a three-year-old. I come from a big Irish Catholic family, went to prep school here, went to college, both close to home. And now I live very close to my parents. I'm a big family guy. I've enjoyed a really fun career in hockey. I've been really, really blessed to do that. And it's just a little bit about me. And obviously, I, in 2017, was diagnosed with Philadelphia chromosome positive chronic myeloid leukemia in the chronic phase, and since then, been kind of living with that.

Emily: So prior to your diagnosis, were you having any symptoms?

Brian: Yeah, just probably two or three months prior, I started feeling a little fatigue, and kind of really gradually, slowly got worse and worse, and started getting some cramps and a little bit of pain when I woke up in the morning in the bottom of my feet, really felt lethargic during the day. In the morning, wasn't so bad, but then as the day wore on, I just felt more and more tired. And as I got closer to ... That started probably July, and then closer to September, right before training camp, I felt really poor. I thought it was from moving to a new city on a new team. And everybody goes through their physicals and blood work before training camp, or on that first day of training camp. And then I got some answers then.

Emily: So what was your initial reaction to your diagnosis? And how did you process that?

Brian: Well, the diagnosis itself, finally, happened after all the tests were done. It was a bit of a relief, but I'll tell you, when I first had to go back for some follow-ups, for some more blood work, and the alarms were kind of ringing, it was very scary for about four or five days, where we were told that I had ... They were pretty sure I had a form of leukemia. They weren't sure which kind. And I went to doctor internet, and decided to try and figure out for myself, and it was a pretty scary few days. And then when we were told it was what it was, the chronic myeloid, I was told that there were certain opportunities for treatments that had come a long way. So we'd gotten past the shock, and I just realized that it was going to be obviously some form of a battle. And I got to wrap my head around what exactly it was, and started the challenge from there.

Emily: And how did CML impact your life both professionally and personally?

Brian: So I guess personally first, it was really scary because at the time, my daughter was I think three or four months old, and my son was just over two years old. And we were in a new place. We were trying to meet some new people. And we'd just moved to the city a couple weeks prior to that in New Jersey. And it was difficult because now you're introducing yourself to these people, and it was public knowledge because of my profession, which was, in most ways, was a really great thing. It was not the ice breaker you want, but it certainly broke the ice with a lot of people.

Telling my parents was a difficult phone call to make. They were very concerned, obviously, as parents tend to be, and that was difficult. I leaned on my wife quite a bit, and that brought us very close together. She was a great teammate in that battle. And professionally, it was alarming as well because I wasn't sure if I was going to be able to continue playing. And it was difficult in that sense. And it was also extremely uplifting, and an amazing experience to see the outpouring of support and love that I got from colleagues around the league and different leagues, and coaches and everybody involved in the sport of hockey that reached out.

Emily: That's wonderful. Support is so important when you're going through something like this.

Brian: It really, truly is. And I will say that being in a position where people have told me some bad news, and I was on the receiving end to try and comfort them, and it's okay not to know what to say sometimes. But people know, they know that you're supporting them. And I felt that. I knew a lot of people didn't know how to reach out, or didn't know exactly what to say, but just the fact that they were doing it was really comforting for me.

Emily: So what would you say were the most important things that helped you get through that diagnosis? You've talked about a little bit of them, but …

Brian: Yeah. Well, first, you're diagnosed, you're speaking with your doctor, you need to certainly listen to the doctor and whoever it may be, just to understand this is the field that they're in. They're experts at it, so you have to have a great relationship and trust what the physician's telling you because that's your number one, I think, support system. That's the doctors are, they're wonderful human beings that have dedicated their lives to helping other people. And you make a plan with your doctor. That's what I did. It was number one. I certainly leaned on my faith. There was a lot of time spent on my knees praying to understand exactly what was going on.

My friends and my family certainly, a lot of them did worry sometimes, which was not the best feeling for me because I didn't want people to worry about me. But the love that they gave me and the prayers that they gave me was huge. And then you find what you're doing in your life, it changes when somebody tells you, you have cancer. And for me, what I did was I made a challenge to myself.

I just set goals, and it was difficult being on the ice completely by myself without any teammates because I wasn't allowed to take any kind of contact. But I approached that day thankful to be on the ice, to be able to skate, even if it was by myself. So I just set certain goals, and I those were I think really important things that all put together can get you through some of the darker days and make the good days a little bit better.

Emily: Yeah. I think goal setting, but I also heard you say basically kind of resetting your expectations. You couldn't do maybe working out with your teammates, but kind of resetting what you can do, and focusing on what you can versus what you can't.

Brian: Exactly. I mean, there were certain limitations, especially early on. With what I had, the blood count was obviously all out of whack, and that affects other things inside your body. Your body's made up to fight certain things, so when a white blood count goes high, different things happen in your body. And I wasn't allowed to take contact, so I said, "Okay, give me a maximum of what I can do today." If it's 40 minutes on the ice by myself, I'm going to make those the hardest 40 minutes. It was certain things like that.

Emily: So what are the most important things that help you manage your CML today? And has it changed from when you were first diagnosed?

Brian: It hasn't really changed, no. I think in terms of a diet, or just living as healthy as I possibly could've was something that I thought I could control, and it spread through the whole house, kind of the grocery bill looked a little bit different in terms of what we were buying. I committed to taking my medicine, the recommended dose, every single day, twice a day. It's something that I think has helped me because it is what the doctor recommended for me.

I've tried to, again, open that up to a lot of different parts of my life and what I've done in terms of training and my diet and sleep. And I've taken all those things into account. And a lot of that was from my very first conversation with my hematologist.

Emily: You mentioned that you take medication twice a day. What medication are you on?

Brian: So I'm on TASIGNA, and I take 300 milligrams twice a day. The way it was prescribed, I wake up in the morning, I take it. And then I have to wait an hour before I can eat. And so it's prescribed on an empty stomach. It was something that I knew about going into, and I thought that would be no issue for me to be able to do that. Two hours prior to taking the medication, I can't eat anything. And then an hour after, I can't eat anything. So there's some times I'm watching the clock to see when I can get my next snack in. But it's been working well, and it's become a habit. So at this point, I think about three years later, it's part of my daily routine.

Emily: Did you start on TASIGNA from the beginning? Or were there different options that were available to you? Why did you choose TASIGNA?

Brian: Well, there were different options. And when I got all the information about all the different options, I just said, "TASIGNA sounds like the best option for me." And my hematologist, she had a sample pack for one week right there. She said, "Start today," and I did. And I've been taking it every day since.

Emily: Many people in our blood cancer community talk about scan-xiety, the anxiety that they have before checkups. Do you get nervous before these appointments?

Brian: Not particularly, no. And my father's gone through cancer. He's had it off and on for over 20 years, actually, believe it or not. And we all get a little nervous with his because it's him. But I've talked to him about it. And I think if you know your body, now I knew how I felt the first time I had blood work done and things came back different. I know going into that training camp, as soon as the trainer came to me and said we needed to get some more tests, that's a feeling I'll never forget, how I felt that day, because I knew something was wrong. I told myself there was nothing wrong, but I knew something was wrong.

Now, I'm pretty in tune with how I feel and my body. I am getting a little bit older, since it's been a few years, and in my line of work, I'm ancient at this point. But physically, I know how I feel. And so when I go in, it's usually great hearing the news that everything's in check. And there is maybe a little waiting period, maybe four or five times, I'll think about it. But there's not a whole lot of scan-xiety going on.

Emily: What would you say to someone who's newly diagnosed with CML?

Brian: So for me, when I was diagnosed, people had reached out to me, and in my community, I had read about somebody that had had it a few years prior to me. And he actually reached out to me. And that I think was the best phone call I could've had during that time. I kind of picked his brain on different expectations, how I was going to feel, what his life was like. He'd had it for a number of years. And after I hung up with him, it was a huge weight off my shoulders. So don't be afraid to reach out to people because it's a lonely fight, especially in the beginning.

And then you find out you're not alone. Unfortunately, there's too many people in the club that have different forms of cancer. And it's not a club anybody wants to be a part of, but I think if you reach out and ask for help, ask just to have a conversation with somebody, call your doctor if you have to, just to go over it again. And try and stay positive as best you can. Know your own strength, and most people are stronger than they even knew it.

Emily: What has having cancer taught you about yourself?

Brian: Well, prior to being diagnosed, I didn't think that ... I never thought anything like that could ever happen to me, obviously. I think a lot of people probably feel the same. And the risk of sounding vain, I didn't think anything could ever get the better of me. Again, and what I do, that's kind of a mentality you have to have. There's a mental toughness that I think you need to develop. And it's really, it humbles you quite a bit. It's something that, say, we don't discriminate. It's an evil thing, really. It's not fair. But it's like any other challenge, and sometimes, I think most times, the harder the challenge, you get to the top of that mountain, it's a better feeling.

Emily: Well, I have to confess, I'm not much of a hockey fan. But I did some research on you before this interview, and knowing that you had to take some time off initially as you were first diagnosed, and then reading about that first goal that you got when you started back again, it was just, I got goosebumps even reading about it. So that must've felt amazing.

Brian: There was a lot to that. A few weeks after I was diagnosed, we had a really big scare with my son. And he had an ailment, and we thought it was actually cancer in his bone, in his jaw. He was going through some treatments. At that point, we found out it wasn't what they had initially thought it was, but he had a little bit of a road ahead of him. And again, he was only two. So it was kind of a few different waves of tough news that was coming down on my myself, my whole family. And he had just finished an operation that morning, and that was, I think it was my fifth game. And we were at home, and my family wasn't at the game.

They usually, at that point, had gone to pretty much every game. They couldn't. But kind of a fluky bounce, the puck came right to me, and it just, yeah, again, I'm still getting ... Three years in the middle of season. Right? Game five for me. It was I think our 16th game of the year. It went in, and I've never celebrated so hard for anything. And I have a picture of it, of my celebrating. It was for all of us really, we can get through this, it's going to be hard, but we can get through it. Sorry.

Emily: No. It's fantastic. It was an amazing, amazing thing. Obviously, it means so much more than just a goal.

Brian: Truly.

Emily: Thank you for sharing that, and thank you for sharing your story with all of us. I really appreciate it, appreciate your time today.

Brian: It's my pleasure, like I said. This is happiness right here because these challenges, no one should go through it alone. And people should tell their stories because if it helps one other person, one other patient, that would make me very happy because there are some dark days, and you need all the love and support that you can possibly get, especially in fighting something unfair and as evil and cruel as cancer can be.

Emily: Absolutely. Thank you.

Brian: Thank you, Emily.

IMPORTANT SAFETY INFORMATION ABOUT TASIGNA® (nilotinib) Capsules

QTc Prolongation and Sudden Death: TASIGNA can cause QTc prolongation, a possibly life‐threatening heart problem. QTc prolongation causes an irregular heartbeat, which may lead to sudden death. Call your doctor right away if you feel lightheaded, faint, or have an irregular heartbeat while taking TASIGNA. These can be symptoms of QTc prolongation.
  • Your doctor should check your heart with a test called an electrocardiogram (ECG)
  • Do not take TASIGNA if you have long QTc syndrome or low levels of potassium or magnesium in your blood
  • TASIGNA can interact with many medicines and supplements. This may increase your chances for serious and life‐threatening side effects. Do not take any other medicine while taking TASIGNA unless your doctor tells you it is okay to do so
  • Food and grapefruit products increase the amount of TASIGNA in your body. This may increase your chances for serious and life‐threatening side effects. Take TASIGNA on an empty stomach
    • Avoid eating food for at least 2 hours before the dose is taken, and avoid eating food for at least 1 hour after the dose is taken
    • Avoid grapefruit, grapefruit juice, and any supplement containing grapefruit extract while taking TASIGNA

TASIGNA can cause serious side effects that can even lead to death. During treatment with TASIGNA your doctor will do tests to check for side effects. These tests will check your heart, blood cells (white blood cells, red blood cells, and platelets), electrolytes (potassium, magnesium), cholesterol, blood sugar, and pancreas and liver function. Your doctor may have you stop TASIGNA for some time or lower your dose if you have side effects. You should follow your doctor’s instructions. Serious side effects include:

  • Low Blood Counts: Low blood counts are common with TASIGNA but can also be severe. Your doctor will check your blood counts regularly during treatment with TASIGNA. Call your doctor right away if you have symptoms of low blood counts including:
    • Fever, chills, or other signs of infection
    • Unexplained bleeding or bruising
    • Shortness of breath
    • Unexplained weakness
  • Decreased Blood Flow to the Legs, Heart, or Brain: People who have recently been diagnosed with Ph+CML and take TASIGNA may develop decreased blood flow to the legs, heart, or brain. Get medical help right away if you suddenly develop any of the following symptoms:
    • Chest pain or discomfort
    • Numbness or weakness
    • Problems walking or speaking
    • Leg pain or your leg feels cold
    • Change in the skin color of your leg
  • Pancreas Inflammation (Pancreatitis): Call your doctor if you have symptoms including sudden stomach area pain with nausea and vomiting
  • Liver Problems: TASIGNA can increase your risk of liver problems. People who have had liver problems in the past may be at risk for getting liver problems with TASIGNA. Call your doctor, or get medical help right away if you develop any symptoms of liver problems including stomach area (abdominal) pain, yellow skin/eyes, and dark‐colored urine
  • Tumor Lysis Syndrome (TLS): TLS is caused by a fast breakdown of cancer cells. Your doctor may do blood tests to check you for TLS. TLS can cause you to have kidney failure (with the need for dialysis treatment) and/or an abnormal heartbeat
  • Bleeding Problems: Serious bleeding problems and death have happened during treatment with TASIGNA. Call your doctor right away if you develop signs and symptoms of bleeding such as uncontrolled bleeding, changes in eyesight, unconsciousness, sudden headache, or sudden confusion about your surroundings
  • Total Gastrectomy: Tell your doctor if you have had a surgical procedure involving the removal of the entire stomach (total gastrectomy). Your doctor may need to change your dose
  • Lactose: Tell your doctor if you have a severe problem with lactose (milk sugar) or other sugars. TASIGNA capsules contain lactose. Most people who have mild or moderate lactose intolerance can take TASIGNA
  • Fluid Retention: Your body may hold too much fluid (fluid retention). Symptoms of fluid retention include shortness of breath, rapid weight gain, and swelling
  • Abnormal Growth or Development in Children: Effects on growth and development have happened in children with chronic phase Ph+ CML during treatment with TASIGNA. Some children and adolescents who take TASIGNA may have slower than normal growth
  • Pregnancy and Breastfeeding: TASIGNA should not be used during pregnancy since it may harm an unborn baby. If you become pregnant, think you may be pregnant, or are planning to become pregnant, tell your doctor right away. If you are able to become pregnant, your doctor should perform a pregnancy test before you start TASIGNA. Effective birth control should be used during treatment and for at least 14 days after your last TASIGNA dose. Do not breastfeed during treatment with TASIGNA and for at least 14 days after the final dose
  • Treatment‐Free Remission in Adults: Your doctor will monitor your CML during treatment with TASIGNA to see if you are in remission. After at least 3 years of treatment with TASIGNA, your doctor may do certain tests to determine if you continue to be in remission. Based on your test results, your doctor will decide if you are eligible to try stopping treatment with TASIGNA. This is called treatment‐free remission (TFR)
    • Your doctor will carefully monitor your CML during and after you stop taking TASIGNA. If your test results show your CML is no longer in remission, your doctor will restart TASIGNA treatment
    • It is important that your doctor does frequent monitoring to find out if you need to restart your TASIGNA treatment. Follow your doctor’s instructions about restarting TASIGNA if you are no longer in TFR
  • Drug Interactions: TASIGNA can interact with many medicines and supplements. This may increase your chances for serious and life‐threatening side effects. Tell your doctor about all the medicines you take including prescription and over‐the‐counter medicines, vitamins, and herbal supplements

If you need to take antacids (medicines to treat heartburn) do not take them at the same time that you take TASIGNA. If you take:

    • A medicine to block the amount of acid produced in the stomach (H2 blocker): Take these medicines about 10 hours before you take TASIGNA or about 2 hours after you take TASIGNA
    • An antacid that contains aluminum hydroxide, magnesium hydroxide, and simethicone to reduce the amount of acid in the stomach: Take these medicines about 2 hours before or about 2 hours after you take TASIGNA
  • Common Side Effects in Adults and Children Include:
    • Nausea
    • Diarrhea
    • Rash
    • Cough
    • Headache
    • Constipation
    • Tiredness
    • Muscle and joint pain
    • Itching
    • Vomiting
    • Fever
    • Night sweats
    • Runny or stuffy nose, sneezing, sore throat
  • Side Effects in Adults Attempting TFR: If you and your doctor decide that you can stop taking TASIGNA and try TFR, you may have more muscle and bone (musculoskeletal) symptoms than before you stopped treatment. Symptoms may include muscle pain, bone pain, arm and leg pain, spinal pain, and joint pain

Tell your doctor if you have any side effect that bothers you or does not go away. These are not all of the possible side effects of TASIGNA. For more information, ask your doctor or pharmacist.

You are encouraged to report negative side effects of prescription drugs to the FDA. Visit www.fda.gov/medwatch, or call 1-800-FDA-1088.

Please see the full Prescribing Information, including the Boxed WARNING, and the TASIGNA Medication Guide.

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