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Making the Choice to Undergo Stem Cell Transplant for Myelofibrosis: A Patient Story

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Published on December 1, 2016

What factors should you consider when deciding to undergo a stem cell transplant (SCT) for myelofibrosis?  Hear firsthand experience from Bo, who was diagnosed with an MPN at age 36.

He shares his story of being diagnosed first with essential thrombocythemia (ET) that quickly progressed to myelofibrosis (MF). When his doctor mentioned a potential cure via SCT, Bo really didn’t hesitate. Listen as he shares how he prepared for the SCT, including finding a donor, the role his wife, Holly, played and how he’s feeling today. 

This town meeting was sponsored by Incyte Corporation. It was produced by Patient Power in partnership with Carolinas HealthCare System's Levine Cancer Institute. 

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Carolinas HealthCare System's Levine Cancer Institute

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Transcript | Making the Choice to Undergo Stem Cell Transplant for Myelofibrosis: A Patient Story

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.

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. 

Moira Quinn:

I'm Moira Quinn, and we're at the Levine Cancer Institute in Charlotte, North Carolina, talking about MPNs.  And I have a very special guest with me, Bo, who as a patient has a story of courage, selflessness and really a remarkable journey.  Bo, welcome. 

Bo Collins:

Nice to have…

Moira Quinn:

Glad to have you with us.  So talk to me first about your journey.  You were diagnosed with ET at the age of 36 through a routine physical.  Tell me about what happened.  What was your initial reaction? 

Bo Collins:

Well, I went to the physical, and a couple weeks later the doctor said, I think we ought to go see an oncologist, and found out that my platelets were really high, and—what can you do?  I mean, that's big news. 

Moira Quinn:

It is. 

Bo Collins:

But I had a job that I needed to continue with, and I just kept—kept on.  And I didn't decide right there to stop everything, so we just waited until it progressed more. 

Moira Quinn:

So it did progress.  It progressed to MF and then—then what did you do?  

Bo Collins:

Well, I was starting to feel the physical symptoms. 

Moira Quinn:

Yeah. 

Bo Collins:

My spleen in particular was painful, and night sweats, just being uncomfortable at work.  And that's about the time Dr. Gerber, you know, says, There's—well, there's a cure for this, so there's a path you can take to cure it, so. 

Moira Quinn:

So what did he suggest? 

Bo Collins:

A stem cell transplant. 

Moira Quinn:

So that's a big decision.  

Bo Collins:

Yeah, it is.  I immediately thought of my best friend in college who had Hodgkin's, and he was 34 and he didn't make it through, but he was—he had gone through a stem cell transplant.  So that was the first thing that entered my mind that, wow, this has got to be a big deal, so that was on my mind.  

Moira Quinn:

Right.  So stem cell transplant.  So who did you think of—who did you go to be a donor for the stem cell transplant?  

Bo Collins:

Well, Dr. Gerber said that in this case I could do a related donor, which would be a mom, dad or my brother.  My brother wasn't a match at all, but there's only a 30 percent chance that a sibling would be a match, so it was going to be either my mother or father.  And we chose my dad for the first one, and so that was... 

Moira Quinn:

So your dad was your donor.  And what was it like to do the stem cell transplant? 

Bo Collins:

Oh, Dad was down the hall and on a machine that would spin off his stem cells, and I was literally a hundred yards away down the hall in a bed.  And there's a lot of prep work beforehand as far as getting your immune system down to a point where it won't be able to fight his immune system.  So, yeah, it's just a matter of taking the bag of stem cells down to me and putting them right into my port. 

Moira Quinn:

And how did it go? 

Bo Collins:

Well, if went fine.  I remember having my phone on me, and I was videoing it going through the tube up to my line.  And, you know, they said that I would have a fever or, you know, I wouldn't feel very good because my body was going to try to reject it possibly, so I did, I had—that was probability the roughest part was having a fever for a few days. 

Moira Quinn:

Yeah. 

Bo Collins:

And what comes along with that. 

Moira Quinn:

So did it work? 

Bo Collins:

No, it didn't, but I didn't find out for a little while because, you know, you have to wait.  I was in the hospital for five weeks, lost about 50 pounds, which was good, but not really the—I wouldn't recommend that diet for anybody.  

Moira Quinn:

Oh, no.  No kidding.  So the first one didn't work, and so what did you decide to do then? 

Bo Collins:

Well, there was—for me there was no other choice but let's try another donor, and Dr. Gerber encouraged me if I wanted to get a second opinion that was fine.  So I did.  I went to another facility, checked it out, and ultimately thought I was already at home here at Levine, so I stuck with Dr. Gerber.  And he said, well, we'll use your mom this time.  And so we did, six months later. 

Moira Quinn:

Wow.  A lot of people wouldn't have the courage to do it another time, because it's rough.  It's rough?  

Bo Collins:

It was rough, yeah. 

Moira Quinn:

Yeah, so—but you did it the second time. 

Bo Collins:

Did it the second time and it was—compared to the first one it was a breeze.  It wasn't a breeze, but… 

Moira Quinn:

Compared. 

Bo Collins:

Yeah, comparably it was—it was much easier.  Didn't have the weight loss.  It wasn't as hard I believe on my body.  I still had an appetite.  I didn't for several weeks have an appetite the first time around, but, yeah, for some reason mom's blood did the trick. 

Moira Quinn:

Did the trick.  So it took.  

Bo Collins:

It took and, and I could tell—I could tell immediately that things were on a different path. 

Moira Quinn:

Right.  

Bo Collins:

So that was—that was very encouraging. 

Moira Quinn:

So tell me about your wife, Holly.  What role has she played?  So your mom and dad played a big role, but your wife, Holly, has also played a big role in your care and treatment. 

Bo Collins:

She has, for sure.  For someone to give up their life and put it on hold, Holly has a salon that we built four years ago from the ground up and brought her clients in, and she relied on, like I did, on friends and family to help during that time. So she had friends who kept clients for her, and she was worried about losing that business, but it was always focused on me first.  It's always nice when you have someone who puts you first. 

Moira Quinn:

Right.  

Bo Collins:

And this whole experience really, speaking of that, made me think about—I seem to always put myself first, and that's something that this whole experience has taught me is it's not all about me, because I noticed the pouring of kindness when friends and family found out about what I was going through and really showed that they cared and wanted to help. 

Moira Quinn:

Yeah.  So do you have any final words of advice to any others who are facing a diagnosis of MPN?  What advice would you give them? 

Bo Collins:

Oh, boy.  Everybody's got a different situation. 

Moira Quinn:

Right. 

Bo Collins:

So I would say weigh all the—consider everything.  Consider all the options, picking the right doctor, you know.  Try them out like you go test drive a car.  You're going to be comfortable with one, and it's about being comfortable in the environment you're in, so I would say that.  Other than the things that go on inside your body due to a transplant are a lot still unknown, so you start with being comfortable with your environment.  

Moira Quinn:

Well, thank you, Bo.  Thank you so much for sharing your story of courage and your story of hope.  

Bo Collins:

Oh, thank you. 

Moira Quinn:

And I hope it gives hope to a lot of folks who are watching.  

Bo Collins:

Hope so, too.  

Moira Quinn:

Yeah.  Thank you very much.  I'm Moira Quinn for Patient Power.  And remember that knowledge can be your very best medicine.  

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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