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MPN Patient Says There's an Explosion of Research

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Published on February 12, 2020

Key Takeaways

Myeloproliferative neoplasm patient and American Society of Hematology (ASH) Meeting attendee Jill Rich shares her myelofibrosis journey with Andrew Schorr and her hope for the future.

[Editor’s note: 1/28/20: In the video, Jill mentions she she was planning to have a conversation about transplant and additional blood tests with her doctor after she returned from ASH. That blood test showed she is the highest she’s been since last February. Her doctor thinks it might have taken a while for the epoetin alfa (Eprex) at a higher dose to kick in. They decided she doesn’t need a transplant as urgently as they thought and will have another consult later in 2020.]

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Transcript | MPN Patient Says There's an Explosion of Research

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 with Patient Power and also living with myelofibrosis and MPN now for eight years. I’m coming to you from Orlando, Florida where we’re here for a big hematology convention. I have primary myelofibrosis, so does this woman, Jill Rich from Toronto. And you’re here to learn also about the latest. So, when were you diagnosed, and how are you doing?

Jill Rich:                   

I was diagnosed in August of 2017, so I’ve had it for two years now in a couple of months, and I’ve been doing very well, I’ll say that. And just very recently in the past few weeks, in fact, I have not been doing so great. One of the things I think as you know and one of your main symptoms and most people with MF is an enlarged spleen and constitutional symptoms like night sweats or fevers or weight loss. And for me, I don’t have those particular symptoms; I have anemia. And most people with MF do have anemia but mine is more severe.

And so, unfortunately, all of the treatments, and there’ve been some great treatments and some great discoveries and a lot of really happy news for MF patients over the past several years, but it’s all been targeted toward people who have enlarged spleen. And that’s the primary outcome is to reduce the spleen, but those JAK inhibitors also tend to make you more anemic. So, they are not for me. And so, what I have been on is something called the erythropoietin-stimulating agent and some people… 

Andrew Schorr:       

To boost your red cells.

Jill Rich:                   

…might be on that is to boost my red blood cell production, and I got placed on that immediately right from diagnosis, and I’ve been functioning very well. I’ve still been anemic but my body adjusted to being at a low level and I’ve been able to live my life and work a full-time job and raise a young daughter and… 

Andrew Schorr:       

…this is a neuropsychologist. 

Jill Rich:                   

Yeah.

Andrew Schorr:       

Wow, okay. So, let—some of us know numbers, because we get blood tests, right? So, my hemoglobin I guess it is, is like 12.3 which is lower than normal but still good.

Jill Rich:                   

For a woman that would be normal.

Andrew Schorr:       

Yeah, and yours has gone down to what? 

Jill Rich:                   

Yeah, 7.3 as last—just a few days ago. 

Andrew Schorr:       

So, that makes it tough. You’re like—it’s like walking through… 

Jill Rich:                   

Yeah, I’ve been in the nines. So, in Canada, by the way, we use a different scale and so our range is 120 to 160 for women, which would be 12 to 16 for American. 

Andrew Schorr:       

And you were down to what?

Jill Rich:                   

And, so I was down to 73, which is the 7.3 on the American system.

Andrew Schorr:       

Okay.

Jill Rich:                   

So, I’ve required a blood transfusion. I just had one a couple of days ago, otherwise I wouldn’t be here at this meeting.

Andrew Schorr:       

And it juiced you up? 

Jill Rich:                   

Yeah, you get about a boost of a full point for each unit of blood.

Andrew Schorr:       

So, you’re a scientist.

Jill Rich:                   

That’s right.

Andrew Schorr:       

So, how do you view us living with this PMF? I mean you have one version of it, maybe I have another. You were here a little while ago we were recording a program with really leading experts. How do you feel about your future?

Jill Rich:                   

Well, actually I think that things are hopeful. Even if I do need to go to stem cell transplant, which is something I’m going to be seriously considering with my doctor in a few days, actually, this week. We’re meeting to discuss it. So, everything I’m learning about at this meeting couldn’t be better news for the MPNs. What I see is just an explosion of research, also the Nobel Prize winners in physiology or in medicine this year was for something related to the blood that could potentially help MPN patients.

And there are a lot of pharmaceutical companies here working on drugs, new treatments, things we’re learning from Europe and a lot of cooperation is what I see between centers. It is a rare disease. I know that MF in particular is one per 100,000, so it’s rare, but by these centers and these doctors being here at meetings like this they’re combining their data, working together and I think it’s very hopeful news. I would say that when I was first diagnosed I was actually much more distressed than I was after I started treatment and got used to the news and got over the shock of it. If you’re healthy and you’re living your life and you’re working and you have a family, just to get this news and you don’t have, you never heard of it before or anything, it can be a shock.

And then you start reading things and seeing all the worst case scenarios. But I think living with it, going around, getting some treatment, feeling okay and hearing the hopeful stories and all the research coming out actually makes me very optimistic about the future. 

Andrew Schorr:       

Jill, and I, you told me that some of your learning has been from Patient Power.

Jill Rich:                   

That’s right.

Andrew Schorr:       

I hope that’s been helpful to you. 

Jill Rich:                   

It has. I’ve enjoyed them.

Andrew Schorr:

Okay, Jill Rich from Canada. And both of us blood brother, blood sister living with myelofibrosis, but wherever you are with an MPN take heart from what Jill said, okay?

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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