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MPN Patient Shares Stem Cell Transplant Process

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Published on February 10, 2020

Key Takeaways

  • After living with MPNs since her 20s, Samantha underwent a stem cell transplant.
  • Samantha read a lot of booklets from medical institutions and journal articles with technical details but saw there was a lack of written information from patients themselves. That's what inspired her to write her blog series.
  • You can read Samantha’s three-part blog series on Patient Power, which will be coming soon.

MPN patient Samantha Trahan gives an update on her 20-year health journey after undergoing a stem cell transplant and what inspired her to write a blog series detailing the process. She speaks candidly to host and fellow MPN patient Andrew Schorr on how a transplant can be a nuclear option along with what she shares in her blog series regarding pre-transplant, during the hospital stay and the recovery period.

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Transcript | MPN Patient Shares Stem Cell Transplant Process

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. Andrew Schorr here in California with my MPN friend, Samantha Trahan, who joins us from Houston, Texas. She has quite a story to tell, and we wanted to update you. She’s been on Patient Power numerous times and a great contributor with quite a journey. Samantha, thanks for being with us once again. 

Samantha Trahan:      

Yeah, thanks for having me, Andrew. 

Andrew Schorr:         

So, let’s just remind people, Samantha is an attorney in Houston, Texas. She’s married with a child in college—an adult child—and she has gone through a transplant for myelofibrosis after, in her 20s, diagnosed with ET and then PV and then MF, like I have. But she’s gone on to a transplant. So, that was in May of 2019. We’re recording this in January of 2020. Samantha, first of all, how are you doing?

Samantha Trahan:

I’m doing well. It’s been a tough journey, and it’s harder than I expected it to be. But I’m back up on my feet and getting stronger every day. They say myelofibrosis takes a hard toll on the body. And so, even after transplant, it takes your body a while to heal. And so, I’m doing better, certainly, every day. And I’m glad, at eight months long, I’m here having this video. But transplant and post-transplant’s quite a struggle. 

Andrew Schorr:         

Right now, there’s a friend of mine her in San Diego, Sandra Dillonwho is on one of the JAK inhibitors like I am, and she’s viewed the transplant as what she calls the nuclear option. Would you describe it that way? I mean, look, you’re alive, and you’re recovering. How would you describe it? And I know we’re going to be featuring a three-blog series that you’ve done where you get into great detail about it, and we’ll hit the high points now. But it’s a big deal, isn’t it?

Samantha Trahan:      

It is a big deal. I have to say, when I—I know this was, possibly, going to be in my future since, say, the last 10 years, and I sort of had already accepted that. And so, when it became time, I wasn’t that terribly worried. I just knew it was the right thing to do, and I agreed to do it. But actually, undertaking that option was pretty eye-opening, and it, partly, gave rise to this feeling that I wanted to write a blog about it and be very honest and be very specific about what that process is like because it is a nuclear option. I mean, it was my last option, my only option, and I’m glad to have such a great medical team and support and the information out there, but it is a big deal.

Andrew Schorr:         

So, let’s discuss what people can see in this three-blog series. So, first of all, taking the step to start, you discuss that. As you say, really, day zero, for you, was not the day you got the transplant, but when you spoke to the transplant coordinator and said, “Okay, let’s get the process started,” right?

Samantha Trahan:      

Yeah, that’s right.

Andrew Schorr:         

And that goes on for quite a while, but you talk about the logistics you had to arrange with your family. Your son was starting college and moving in. You couldn’t be there for that. Your sister helping with your whole household, your relationship with family and friends and communication and then the whole clinical part of it where they really blast you to get you ready to accept somebody else’s cells, right?

Samantha Trahan:      

That’s right, and that first part of my blog is detailed. It is all the things that you have to do to get your mind and your body ready to go and logistics and home life and all of that, Andrew, only so that you can be prepared to go into the hospital and, from the medical perspective, to get started. There’s so much more that goes into a transplant than just getting started.

Andrew Schorr:         

In your blog, you really wanted to write it, because you felt that there wasn’t always enough that was written from the patient perspective of going through it. There’s a lot of, this is going to happen, and that’s going to—but you shared sort of a 360-degree view because you felt that was needed.

Samantha Trahan:      

I did. I spoke to a number of patients, and I had some one-on-one contact with others, and I read a lot of hospital-provided material at Memorial Sloan Kettering, MD Anderson. There are a number of facilities that put out a lot of great literature, but I wanted to see something from a patient like, “No, really, what was your day like? What happened when you were in the hospital? When you came out, what did you want to eat?” I just wanted more day in the life, what, really, was this going to be like for a patient, for you?

And when I did my research, I didn’t see enough of that, I felt, to really answer all of the questions that I had. So, I told myself – I’ve been a participant with Patient Power – that I would sit down and write something. And then, when I came outta transplant, I didn’t want to write anything. I just wanted to start over again and ignore that any of this had happened, and I thought, “No,” I kept a journal. I kept notes. I thought this was important before the process. It was still important after the process. But it took me a while to sit down and write anything. But ultimately, I wrote this three-part series. So, one, preparing for the transplant and then, part two, being in the hospital and then, part three, recovering from the transplant afterwards.

Andrew Schorr:         

Wow. Well, I hope people will take a look at that. But really, what you’ve been doing, when you haven’t always felt great, is paying it forward. Somebody donated cells to you. People have done blood draws, etc., and this expression of what it’s really like is a blessing, I think, for other people.

Now, look, I’m living with myelofibrosis, and I’m sure are the rest of our audience, wherever they are in their MPN journey, is very interested. We don’t know whether transplant could be in our future. And so, this is really instructive. So, Samantha, you had to go over this with almost 20 years—18 years of all this stuff. So, at 44, now having gone through it, how do you view the future? How do you view every day, and how do you view your future?

Samantha Trahan:      

Yeah, so, to me, the future looks so different than—I don’t know—say five years ago. So, five years ago, I knew this was going to happen at some point, so it was in the back of my mind. Either saving or helping raise money for be the match, that was just part of what I knew was coming. And now, it’s a little odd. That’s over. I mean, I’m fully engrafted. I’m doing well. I’m still struggling with food and hair and some of the things that all cancer survivors struggle with for a while, but I have this comfort in knowing that I should be done with this. I should be done with myelofibrosis.

And my body is going to take some time to heal, but I’m moving on to something that should be healthier and fuller and longer. And I try to—I think, every night before I go to bed, that I am only looking forward, that every day is a new day. Yes, we say that to ourselves, but I’m really only looking forward. And I like that sentiment, and it feels very true for me as a long-term myeloproliferative patient, now, that’s undergone this stem cell transplant, that that’s my life now. I am only looking forward.

Andrew Schorr:         

I want to thank you for, first of all, committing the pen to paper and making this blog available in three parts on Patient Power, our interview, our previous interviews with you. All the best in your continued recovery. I hope more foods begin to taste great. Work on that, and maybe, next time, I’ll see your flowing hair. 

Samantha Trahan:      

Hopefully, hopefully. I can use a little bit extra right now. 

Andrew Schorr:         

Well, you and me both. All right, so, Andrew Schorr with our friend Samantha from Houston and her blog, look for it on Patient Power in three parts, and we wish you all, Samantha, just a great, great recovery. Thank you for being with us.

Samantha Trahan:      

Thanks, Andrew.

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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