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Diagnosed with Myelofibrosis: Chris' Story

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Published on July 8, 2020

Diagnosed with Myelofibrosis: Chris' Story

MPN patient and Veteran, Chris Frost, shares with fellow MPN patient and Patient Power co-founder, Andrew Schorr his story of diagnosis, initial treatment and the frustration of the unknown as he prepares for a stem cell transplant. Chris shares the early symptoms such as fatigue, that lead him to seek medical treatment. He underwent many blood tests to get to a myelofibrosis diagnosis. Chris shares details of being asymptomatic to now having issues with his enlarged spleen and liver. He also discusses the medications he's tried, including JAK inhibitors and Inrebic.

Could having served in the military and being exposed to different chemicals contributed to his myelofibrosis diagnosis? Could his diet have been a factor? Are MPNs hereditary?

Chris shares how he is still living his life and making plans for the future, which includes a stem cell transplant. Chris expresses his gratitude to those who are stem cell donors.

Chris' story is a great reminder of that stem cell transplants rely on donors. You could be someone's cure. You can literally save someone's life.

Register at: Be the Match

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Transcript | Diagnosed with Myelofibrosis: Chris' Story

Andrew Schorr:
So, Chris, what symptoms were you dealing with? Just describe what was not feeling right.

Chris Frost:
With me, I was very lethargic and that's a rare thing. I'm one of those guys that stays up until 1:30 in the morning and starts my day at 5:30 or six o'clock the next morning - those days have been gone for a while. So I started to get concerned and at the time I was struggling with diet and they were labeling me a pre-diabetic. So we were watching my blood numbers fairly closely because of that and testing for the A1C and fasting and such and getting my glucose checked.

And from there, I'd say the first two, three years were asymptomatic. It's only been for the last two years that my spleen has really started to grow. Now I'm 6' 2", and about 220 pounds. So I've never been fat, but I'll stand for a second if it helps. Just let me see, are my spleen and my liver are what you see sticking out.

Andrew Schorr:
Sticking out, yeah.

Chris Frost:
And that's after both regular ruxolitinib (Jakafi) and now the newest fedratinib (Inrebic).

Andrew Schorr:
I'm on Inrebic too. So the JAK inhibitors, first Jakafi and Inrebic just haven’t been doing the job, didn't reduce your spleen size, hence seeking out more expert care and ultimately the recommendation of a transplant.

Chris Frost:
Yes, yes. '15, according to the VA, this was a terminal illness. There was no chemo, there was no cure. It was a wait and we'll manage symptoms as best we can. I met Dr. Faber after being frustrated in late '16 and talked to him at length and did my research on him and then really started visiting him after that '17 and '18, maybe once a year. But then all of '18 and '19, mostly '19, we started seeing each other much more often and watching the count, looking for the blasts and things that he really wanted to look for, that I feared the VA wasn't really equipped for. And that's nothing against the VA. It's just, that's the cards they're dealt over there.

Andrew Schorr:
Right. Right, So I want to go back for a second on when you were told you had myelofibrosis. So did you have a bone marrow biopsy? And then-

Chris Frost:
I did.

 Andrew Schorr:
... they come back with the report, "You have myelofibrosis." And if that's how it happened, what was your reaction? Nobody had ever heard of it.

Chris Frost:
I didn't know what to think. I'll tell you, after watching all the marketing between attorneys and drug prescription companies, I thought it was some other type of fibrosis that I've seen drug companies try to sell stuff for. I really didn't know. I didn't know what any of it meant. And then I was given a couple websites that were not really biased. They, the Cleveland Clinic, I think was one of them to really to dig down and figure it out. My biggest problem today I feel is it would be nice if we knew why? What caused it? What is the event? Where was I? What did I do? Was it my behavior? Is it genetic? Has it always been in my marrow deep and look for some catalysts to escape? Those are the things that frustrate me. And I'll tell you the reason why it frustrates me, now where I am in life.

Is because I thought as a young man, I would join the military as a way to go to college, which I did. What I didn't realize is that I would be in the middle of oil fields burning in Kuwait and burning our leftover feces until it was ash with Mogas and diesel. And atropine injector hit me in the rear end from your NBC mask and add an experimental anthrax pill. And some Vietnam era DEET, that's supposed to be white, and lotion now is clear and it's 115 degrees outside as we're rubbing this into our pores. So I would like... It would be nice if somebody can say, "Oh, yes, it was in fact that," or, "Hey idiot, you got too close to Roundup one day when you were getting rid of the honeysuckle on the back 40," that's frustrating to me.

Beyond that, I'll tell you, Andrew, and you've been in the same boat and you're in it now. Maybe it's military, maybe it's a man thing, but there's nothing I can do about it, really. I mean, my control and my power is limited to the inputs I put into my body from that diagnosis moving forward. So I've tried to do my best and not drink alcohol. I haven't had a sip of alcohol in over a year, not that it was a big deal, anyway, I was kind of a wine guy. But the fatties and the sugars and all of these things all add up.

But my wife and I discussed it and we decided then, we can spend our next five years getting ready for the inevitable as the VA described it, or we can spend the next five years making memories, having a life, enjoying ourselves. So five years ago, I started my company. And as of today, it's about a million and a half dollar a year company. We're super successful. I employ lots and lots of men who pay taxes. And it's a very good field. I'll tell you on one thing, it's up to you, if you share it or not. But should this go well and the transplant take, I would like… Excuse me. I'd like to say thank you to the donor.

Andrew Schorr:
Right. Right. To who donates those cells that can save and extend your life. Well, I hope you get to do that, Chris. Here you are with the transplant coming up in a month, right? We wish you all the best with that. You've had a road of several years now, not knowing what caused it. As you said, as a military veteran who was around a lot of toxic stuff, did that play a role? Do you have children?

Chris Frost:
I do. My son just came home from the Marine Corps. He's been in Twentynine Palms, California for the last four years.

Andrew Schorr:
Right, so you-

Chris Frost:
And he's out... Sorry.

Andrew Schorr:
You brought it up about hereditary. Is there a hereditary cause?

Chris Frost:
That scares me.

Andrew Schorr:
Yeah, we don't know, if you have kids. I worry about that with my kids too. Well, Chris, thank you-

Chris Frost:
I have a daughter also in Florida. So we're watching it pretty closely.

Andrew Schorr:
Yeah. Thank you for sharing your story. I'm excited for you that your business is going well. I'm really delighted that you've shared your story of you and your wife seeking out expert care and just hope everything goes well. And we want to revisit with you. And if we can ever figure out together who your donor is, I want you on together. So you can give him a big hug. Okay? Okay.

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