Myelofibrosis Patient Story: Traveling From Afar for a Stem Cell Transplant

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Sometimes it is necessary to travel to find expert care. Diagnosed with myelofibrosis (MF) in 2012 by her doctor in Nepal, Suvani Singh believed she only had a blood disorder. After much research, Suvani realized that neither she nor her doctors fully understood her diagnosis.  With much encouragement from family, Suvani traveled nearly 7,000 miles to Seattle, Washington in order to receive the world-class care she knew she needed.  Now, more than 60 days post-allogeneic stem cell transplant, Suvani shares her insights and plans for her future care.

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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.  When you talk about the MPNs, particularly myelofibrosis, which I have and perhaps some of our viewers, you hear that one of the treatments potentially curative is allogeneic transplant, where there's a donor and in a sense you get a new immune system, and you can be restored to better health. 

Well, sitting with me is someone who's gone through that, Suvani Singh. 

Suvani Singh:

Hello. 

Andrew Schorr:

Welcome.  And you had your transplant, let's see.  I'm trying to think about how many months ago, or sometimes you count out how many days you are post-transplant.  Do you know? 

Suvani Singh:

I think I'm 60?odd days. 

Andrew Schorr:

60?odd days...

Suvani Singh:

Or maybe 70 days. 

Andrew Schorr:

…post-transplant.  How are you doing? 

Suvani Singh:

I'm doing great, a little sleep deprived, but I think that is to be expected.  But appetite is good, and everything else is on the rise.  

Andrew Schorr:

So you're feeling upbeat.  

Suvani Singh:

Yes, I am feeling very upbeat.  The energy levels are better as well, compared to you know, day 20 or something. 

Andrew Schorr:

Oh, I'm sure.  Well, let's put a little context here.  So Suvani is from Nepal.  Nepal, think Mt. Everest, all this stuff.  She's from Nepal, was diagnosed with myelofibrosis how long ago? 

Suvani Singh:

In 2012. 

Andrew Schorr:

Okay. 

Suvani Singh:

Early 2012.

Andrew Schorr:

Okay.  So 2012.  So imagine being diagnosed with a rare condition where there aren't like specialists everywhere, trying to get an understanding of what she had.  You're a smart lady.  You worked on educating yourself.  And fortunately you had a friend back here in Seattle, where we are right now, at this institution, where we are right now, at the Fred Hutchinson Cancer Research Center, who said, Suvani, you need to connect with a specialist. 

Suvani Singh:

Yes.  I was very confused back in 2012.  I only thought that myelofibrosis was a blood disorder, and I thought, oh, it's something to be managed, and that is what the doctors back home and back in India that I had consulted had told me.  And I thought, okay, it's just a disorder, nothing, you know, beyond that. 

Andrew Schorr:

Not cancer. 

Suvani Singh:

Yes, not cancer.  And but my friend was very insistent.  She said, when you are ready for more answers, this is the place you have to come to, and I will connect you with the right specialist, and that's what she did, and I'm ever so grateful for that connection.

Andrew Schorr:

Because you had pretty extreme fatigue.  You were dealing with a lot of symptoms and not necessarily the right insight to start with. 

Suvani Singh:

Yes.  I mean, when I was doing a lot of research on the internet I was coming up—across just very specific information, and there were no answers beyond that information, and I was quite perplexed about that, because the Internet provides lots of answers. 

But here I was, you know, I had all my friends and well?wishers and family asking me all these questions about the disease, and I had no answers, and I was referring to my doctors, and they came up with the same set of answers.  The Internet came up with the same set of answers, and I was very confused. 

And I think for my own sake of understanding what I had I felt the need to come here and talk to specialists who were doing research, you know, on the disease itself. 

And when I met Dr. Scott, it was the most clarifying moment.  He just put out everything in—in a way that would sort of help me understand what it is actually that I have.  And he helped me understand what I would need to do next, which I think was one of the best [pieces of] advice I could have gotten at that point. 

Andrew Schorr:

Now, we've interviewed Dr. Scott, and you can see this on Patient Power, and he takes you through what he's thinking about it, whether somebody might be a candidate for transplant.  In your case, obviously you had that discussion, he recommended it.  Your older sister became your donor.  What a blessing, right? 

Suvani Singh:

It was. 

Andrew Schorr:

And so here you've gone through a transplant.  It's not for everybody, and you're not very old.  You're 35.

Suvani Singh:

Five. 

Andrew Schorr:

Okay, so pretty fit otherwise, okay.  How are you feeling about things now we're 60, 70 days post-transplant?  And also you've been living here in Seattle to go through all this, far from your home.  It's a big deal. 

Suvani Singh:

Yeah.  You know, we get all these guidelines, and there [are] all these manuals and everything. But I think it's very difficult to actually be prepared in any way because there are good days, as well, and there are bad days obviously, but I think it's about trusting your doctors.  It's about trusting the institution.  It's about trusting the research that you have done to get to this point to make the decision to go in for a transplant.  And after that just taking it a day at a time and, you know, making it through the bad days and enjoying the good days. 

Andrew Schorr:

How are you feeling about the future, Suvani? 

Suvani Singh:

I feel very good.  I feel very hopeful.  I'm a bit anxious because I won't be here in Seattle where, you know, the healthcare system is fabulous, the nurses, the doctors, and everyone who—and the care team is so, so great, and that I think adds to you feeling better sooner as well.  And that is not the kind of care that I will, you know, get back home.  It's very different.  So I'm a bit anxious about going home, but at the same time I feel that I do have the support from here to be able to manage my care on my own as well back in Nepal and be able to coordinate with my doctors as I have been coordinating before because of these circumstances and make sure that I'm on top of, you know, the care that I receive. 

Andrew Schorr:

Well, we wish you well. And, of course, you're an example of the worldwide reach of modern medicine, especially in rare diseases, and you've gone not just the extra mile, the extra 10- or 15,000 miles, but we wish you all the best. 

Suvani Singh:

Thank you so much. 

Andrew Schorr:

Thank you for sharing your story.  So transplant is an option for some people.  It's not for the faint of heart, if you will, it's a big deal.  And also all the travel she's done, but she's connected with modern medicine, and we hope for Suvani's sake it makes a big difference for the rest of your life. 

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 December 3, 2015