Michael’s MPN Story: Stem Cell Transplant 19 Years After Diagnosis

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Although there are an increasing number of treatments for MPNs, for some patients, stem cell transplant is necessary.  After over 19 years of living with polycythemia vera (PV), Michael Coulombe was told that his best option was to have a stem cell transplant.  Michael and his wife, Denise, join Andrew to share what it’s been like to go through a stem cell transplant, how it’s changed their future, and advice for others that may be considering this treatment option.

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

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. There are many promising treatments in research for MPNs, and treatment already with approved therapies is making a lot of progress. But some patients need a stem cell transplant. Michael Coulombe is one person who’s had one. He joins us now along with his wife Denise.  Denise, let’s start with you. Tell us about this experience.

Denise Coulombe:         

For a long time, he was just being monitored. And Dr. Snyder would base the decision when it was time to go forward based kind of constitutional symptoms that he was having.

And I wasn’t entirely convinced that he was being honest about those symptoms. He would say I’m fine. You know, I don’t, a little bit of fatigue. But I was seeing a different story at home until, like he’d said, that the chromosome 8 had mutated, and we knew that things would progress much more rapidly at that point.

And so we started moving forward. After having that in the back of my mind for so many years, I felt a sense of relief that, okay, let’s do this, a little bit of excitement actually because we knew once the transplant, once we were post-transplant, it was a new life.

So I looked at it that way. I didn’t really look at it as the risks that were involved. I was more excited to get the show on the road.

Andrew Schorr:

So what do you remember from that time, the first few days after transplant?

Denise Coulombe:         

Well, I would say the first three or four days, he probably slept because they had given him medication, so he wouldn’t have a reaction to the stem cells. So, by, I believe it was day eight, he had a fever that had gone up and had really bad chills. And they immediately started him on the antibiotics and did some blood cultures.

And by the time they had kind of gotten ahold of it, which we didn’t know what it was, but by the time the pathology reports came back from the blood cultures, we learned that he had staph. And I was amazed. He had a 0.1 white blood count at that time, and I would think that staph is not a good thing with no white blood count.

But they ended up just fine-tuning the antibiotics, knocked it out, and then after that, he trucked along for a few more days. And he had some vertigo and a few nosebleeds. But, other than that, some of that was side effects from the medications he had been taking. But it was pretty smooth sailing as far as stem cell transplant goes.

Andrew Schorr:            

How do you feel about the future now for you and your husband post-transplant? What’s your hope?

Denise Coulombe:         

Oh, I’m really excited. We get to plan our retirement for the first time. That wasn’t always something that we discussed. It was kind of a grey area for us. But, very excited, excited to be grandparents together. We talk about, you know, buying property to retire. And, so, it just opens up a whole new door for us.

Andrew Schorr:

Do you feel like the chance for a life together, a longer life together, has been given back to you?

Denise Coulombe:            

Yes. Oh, it’s a gift. We look at things differently. I really think that this whole experience has been a gift given to us, not in a sense that anybody else can understand, just to be able to look at life differently, to handle crisis differently, putting things in perspective. The things that were big before are minuscule. It really puts things in perspective.

Andrew Schorr:            

Michael, your transplant donor was your sister. How do you feel about that gift?

Michael Coulombe:       

I love her to death. I always have anyway. It’s my younger sister. My sisters, I have four, and they were all tested. I mean they were like that quick to say, yeah, I’m there, which was amazing to me because I don’t spend a lot of time with them. Our lives are hectic. We get together once in a while, but it’s not as close as I’d like to be.

And actually, since this, it’s been closer. We’ve been a lot closer. I told my sister, which is Janelle, that I just love her to death, and I can’t believe that she was able to provide me with this. And she did it just with no reservations whatsoever, just yep. And she had to come out here from Texas and get all the protocol that was taken prior to.

It’s an inconvenience for her to come out here and do all this stuff, but she did it willingly. And the way that things were set up, it was amazing. And I love her to death.

Andrew Schorr:

Your sister saved your life.

Michael Coulombe:       

Yeah. And she says she would do it again. And it’s not, you know, that’s what family does. You know, it’s kind of like, we said the same thing because my other sister had breast cancer, and we had to support her.

It’s like we’re a fairly close family believe it or not even though we don’t see each other a lot because of our daily lives. It’s pretty, it’s pretty rough. But that’s pretty much the way I feel about my sister.

Andrew Schorr:            

Did you experience complications with the transplant? How’d you deal with them?

Michael Coulombe:       

As part of the transplant, believe it or not, it was pretty benign in my opinion. But she was the one that was sleeping next to me in the bed and taking care of me every day. There are a lot of things I don’t remember. My wife is so awesome. She did a book. And I have a book from before I started transplant all the way through my transplant.

She gave it to me for Christmas. And it has my counts on it. And a lot of those things in those books I don’t remember. So I did have minor complications but nothing major. I didn’t have a lot of the symptoms that a lot of people have experienced. So, I don’t, you know, I feel very fortunate. She says that I went through some things, but I slept most of the time.

Andrew Schorr:

Michael, for someone considering having a stem cell transplant, what advice would you give them? How can they prepare mentally and physically?

Michael Coulombe:       

Mentally, you have to give it up and understand that you can research, like I said, to make it, give yourself the best opportunity and best chance for survival. And that’s it. And, then, the rest is a day-to-day process. You don’t worry about what’s ahead and you don’t worry about what’s behind. You deal with it one day at a time.

So when you do the stem cell transplant, there’s mixed emotions because you know the risks involved. And you also know what’s on the other side as far as, it’s hard to explain, but, there’s this tangible block in your life that you never think you’re going to get past, and then all of a sudden, it’s no longer there and it’s almost like a rebirth.

And that’s actually how they celebrate the day that you get your stem cells. It’s your new birthday, and it’s appropriate.

Andrew Schorr:             

Thanks to Michael and Denise for sharing their story. Remember there’s also another interview with Michael as he tells about his diagnosis. It’s all on Patient Power. So be sure and be signed up for alerts, so you’ll know whenever we post something new.  Thanks for joining us. I’m Andrew Schorr. 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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Page last updated on August 7, 2014