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Michael’s Journey: Diagnosed with an MPN at Age 33

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Published on July 15, 2014

Michael Coulombe was diagnosed with an MPN, polycythemia vera (PV), at the young age of 33 after seeking medical attention for a sports injury.  Michael tells his 19+ year story of being diagnosed, getting married, staying on treatment, having children, and, most recently, a stem cell transplant. He has truly been through it all but speaks candidly about how he’s handled his condition over the years, how it’s affected his life, family and relationships, and most importantly shares his hope for the future.

This event was produced in association with City of Hope and sponsored by Patient Empowerment Network through educational grants from Incyte Corporation and Geron Corporation.

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Transcript | Michael’s Journey: Diagnosed with an MPN at Age 33

Please remember the opinions expressed on Patient Power are not necessarily the views of our sponsors, contributors, partners or Patient Power. Our discussions are not a substitute for seeking medical advice or care from your own doctor. That’s how you’ll get care that’s most appropriate for you.

Andrew Schorr:            

Hello and welcome to Patient Power. I’m Andrew Schorr. We have to admit most people in their 30s think they have many good years of health ahead of them. It doesn’t always work out that way though. Michael Coulombe went to a doctor to see about what he thought was a sports injury, and it turns out he got a diagnosis of a rare cancer. Quite a shock.  Michael joins us now. Michael, tell us about your diagnosis, how did it happen?

Michael Coulombe:       

I was 33. I was very active. I used to play softball, you know, do a lot of things. And I went in for a physical, just to be, you know, good about my, you know, my health. And then, just about two, three days later, I got a bone spur when I was playing softball. So I went to the doctor right after that.

And they gave me a call back at work and said, “There’s something peculiar here. We need to set you up with a bone marrow biopsy.” I was like, okay. So I went and did the bone marrow biopsy, and they confirmed that I had PV. That’s pretty much it.

But I had no idea what that meant. I mean, she didn’t know what that meant. It was prior to us being married. It was one of those things where I just kind of like, well, I was scared. I didn’t know what that meant. So I researched it, talked to my doctors, and doctors are very important.

Relationships with doctors are very important. Because I’ve had this disease for so long, I fired doctors, because I didn’t have a good rapport with doctors. You have to trust a doctor. So, I did, I found a really good hematologist that I liked, and he ended up leaving his practice. And then I was searching for another doctor.

And for 19 years, I dealt with the polycythemia vera, which is actually a reproduction of red blood cells through the bone marrow that don’t stop. There’s a queue inside your body—a chemistry retrieval, which is a JAK gene. And so you produce and keep producing red blood. And so you get the anemia. You get the pruritus.

You get the, you know, the headaches, really bad migraines. But with treatment, I was able to keep my job, keep working. And very little interruption with my life, as far as, I mean, there were times obviously. And it wasn’t easy for her, once we got married.

But she made that decision knowing that I had had the polycythemia vera and that eventually, it was going to progress. There’s nothing they could do.  

Andrew Schorr:            

How do you deal with that emotionally?

Michael Coulombe:       

So, I knew that eventually I was going to face the myelofibrosis and stuff, so we were able to prepare, but it actually changes your life. It makes you more appreciative of everything around you, you know, dealing with people, and how people take a lot of things for granted.

But, it’s kind of like you knew that eventually this was going to be a crossroads in my life. And that was kind of tough, because it only bothered me when I needed to be treated. So, for 19 years, it was like it’s on the back burner until I have to have a phlebotomy, or I have to have a different type of procedure.

Andrew Schorr:

Michael, help us understand the treatment and doing that over so many years.

Michael Coulombe:

It was not so bad. I mean, it had its moments because it always made me remember that eventually I was going to have to address this in a different light. But, for the time being, phlebotomies, when I go to a hematologist, there’s people with way worse diseases than I had.

So I look at it as I feel very fortunate that they could deal with this with just a phlebotomy and hydroxyurea (Hydrea). And that’s pretty much the way that I lived my life at the time. It was kind of like it didn’t hinder me from doing a lot of things.

It was just always in the back of my mind, the emotional aspects, and the kids, and the, you know, thing about moving on to the myelofibrosis and when. Because you never know and that window is very—there’s an opportunistic point where the window closes on doing these things.

So I was concerned and I didn’t, my doctor finally came to me and said, “There’s nothing more I can do for you as far as hematology. You know, you have to go to the next step.” Well, I got a second opinion. You know, I’m very fortunate because I work for Boeing. They have a free service, which goes to this place called Best Doctors.

And it’s all the best doctors at Harvard, and they get all of your records and everything, and they consult. And, basically, they came back and just confirmed what my other doctors had said was the fact that the only way that I’m going to be cured would be to have a transplant. That’s the only way.

Andrew Schorr:

Let’s talk about transplant. You’ve had one. Did you feel like your body had failed you or that sooner or later it was in your future?

Michael Coulombe:       

Exactly. It was like I had already known for the first 19 years of PV that somebody was going to come to me and say that you’re in the spent phase, which means that your bone marrow is starting to scar. They start analyzing the blasts in the blood, which is the immature cells. And I knew, at that point, that it had progressed to the myelofibrosis.

Well, at the myelofibrosis point is when I started seeking new doctors, because, obviously, my hematologist wasn’t able to do anything more for me. And I was fortunate enough to—I do a lot of research. She does a lot of research.

I’m a statistics guy, so I was looking, I think there’s a point where education is good. But then there’s too much education is bad. So you have to set yourself up. You have to make sure that you give yourself the best opportunities for success. So I researched facilities, and I checked.

And City of Hope was outstanding as far as what they do and how many transplants they do, and the research that they do on these types of diseases that I just said it was a no-brainer. And I was fortunate enough to get Dr. Snyder as my doctor, and that was pretty much it.

And, then, it was a wait-and-see approach. He was basically looking at me and saying, okay, “We don’t need to go to transplant yet. We don’t need to go to transplant.” And then, finally, he came to me and said, you know, my chromosome 8 mutated, which took the, actually it relieved me because I no longer had to make the decision of transplant.

It just happened. It was like, at that point, I didn’t go, well, gosh, is this something I really want to do? Or, it’s like, got to do it. And she was amazing at supporting me, my kids, my family. And I just said it’s got to be done. And Dr. Snyder, I feel I have a great relationship with Dr. Snyder. He’s an awesome doctor. He answers all your questions.

He’s not just a doctor. I think of him as a friend, because I go all the time to City of Hope. You’re there all the time. And then, when you’re in the transplant facility, you’re in there for a month. You know, so, you really get to know the people.

Andrew Schorr:            

So how are you doing now? How have things changed for you?

Michael Coulombe:       

Oh, I feel amazing that I’m on the back end of this. I still have a lot of fatigue. I’m on the prednisone (Deltasone), which is keeping me from, it’s hindering me from getting myself back to work because with that it has its own set of complications. But, you know, I think trusting Dr. Snyder has taken the load off of my mind.

It’s like, if you’re questioning your doctor, it’s just more stress that you don’t need, you know, because you want to be able to just trust in him and know that he knows what’s going on. He’s been proactive. So if any little hiccup in my procedures or whatever’s been going on, he is right on top of it.

He’s been around so long, he knows exactly what he’s doing. And instead of waiting for results for tests, he just attacks it, and then it’s confirmed later, and I’m already feeling better. So I feel now I’m just counting the days to go back to work and get normal, back to normal things, normal life.

I’m getting little glimpses of that now, because it’s a process. And the thing that I can tell people is that a transplant isn’t something you can rush. And it’s not something you can disregard what the doctors are saying. They do these things for a reason, and it’s frustrating because it’s a very slow process. And there’s going to be setbacks.

Andrew Schorr:

How has this changed you as a person?

Michael Coulombe:       

So, as a person, I look at it as a blessing that I went through all this so that I can be more appreciative of the things around me and put things more into perspective compared to, you know, a lot of times I think we lose focus about what’s really important. And I was one of those because I worked 24/7. And I seemed to be missing a lot with my kids.

And, now, I want to make up for that time, and I’m going to have that opportunity. And I want to be able to, you know, we were raising the kids, and they were small, and we were never able to go out. I want to go out on a date night with my wife every Wednesday after I come home from work, let the kids take care of things, you know?

I just love her to death, and I think this experience solidified our marriage. I mean it can be tough. You know, don’t get me wrong. It’s not easy. But the things that she’s done for me and the things that she’s, just my rock. I couldn’t do it alone, you know? And, without her, I wouldn’t be where I am today.

Andrew Schorr:

Michael, Thank you for being with us now and we’ll have more of your story as you describe having a transplant and your wife shares her perspective as well.  It’s all coming your way on Patient Power so be sure to be signed up for alerts, so you’ll know whenever we post something new. I’m Andrew Schorr. Thank you for joining us. Remember, knowledge can be the best medicine of all.

Please remember the opinions expressed on Patient Power are not necessarily the views of our sponsors, contributors, partners or Patient Power. Our discussions are not a substitute for seeking medical advice or care from your own doctor. That’s how you’ll get care that’s most appropriate for you.

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