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MPN Patient Grateful for Research and Clinical Trials

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Published on June 16, 2020

How can being in a clinical trial help you? In this segment from our recent Answers Now program, host Andrew Schorr talks to myelofibrosis patient Phil Arner about how participating in a clinical trial served as a bridge to prepare him for a stem cell transplant.
 
They are joined by MPN experts Dr. Naveen Pemmaraju from the University of Texas MD Anderson Cancer Center and Dr. Jeanne Palmer from the Mayo Clinic Arizona, who share why research moving forward, despite COVID-19, is so important.
 
Watch now to hear Phil share his emotional journey and the researchers give their thanks. This is Part 1 of a 4 part series. Watch Part 2 Is MPN Research Still Moving Forward Despite COVID-19?, Part 3 New Drugs Advance MPN Treatment Options, and Part 4 MPN Experts Discuss Clinical Trials and Transplants.
 

This program is sponsored by Sierra Oncology. This organization has no editorial control. It is produced by Patient Power in partnership with the MPN Research Foundation. Patient Power is solely responsible for the program content.

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Transcript | MPN Patient Grateful for Research and Clinical Trials

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:

Greetings from southern California. I'm Andrew Schorr. Welcome to this Answers Now program for those of us living with an MPN, a myeloproliferative neoplasm. And I've been living with myelofibrosis about nine years, so I'm vitally interested. Joining us we'll have a number of experts. There's one of them that just popped on, Naveen Pemmaraju from MD Anderson Cancer Center in Houston, Texas. Dr. Jeanne Palmer joins us from the Mayo Clinic in Scottsdale, Arizona. And also joining us is, way up from Canada, Ottawa Canada, Phil Arner, who like me, has been treated for myelofibrosis.

Okay. Our topic, and we want to thank the MPN Research Foundation for partnering with us, and Sierra Oncology for being an educational supporter of this program. Our topic is the future of MPN research after COVID-19. But I want to talk about during COVID-19 because we don't have an end date on this right now, and so we're worried. So we're going to start with Phil. But first of all Naveen, thank you for being with us once again.

Dr. Pemmaraju:

Thank you, Andrew and Patient Power, for having me.

 Andrew Schorr:

Okay. As a physician researcher and Jeanne Palmer thank you for being with us too.

Dr. Palmer:

Yes, thank you for having me.

Andrew Schorr:

Phil Arner, Ottawa, when were you diagnosed with an MPN? How did it start?

Phil Arner:

I was diagnosed in April 2011. And it started off as donating blood and they asked if I would be interested in donating platelets, and I agreed. They took a blood sample, and the results of that test was I didn't have enough platelets to give, so they said I better see a doctor. So that started the roller coaster for me.

Andrew Schorr:

Wow, pretty terrifying. I know I was terrified when I heard about it and then myelofibrosis which I'd never heard of. So was it pretty quick that you entered a clinical trial for momelotinib - one of the drugs we'll talk about? How did it happen that you got treatment?

Phil Arner:

Well I went in to see the local specialist in Toronto, well as local as I could get anyways. And at the time this would be October 2011, there was the only drug in trial at that point was Jakafi, but I didn't qualify for that, my platelets were too low. I had to have at least 100, and I think I was between 60 and 80. So in October there was nothing for me and I went home, and it was challenging. But anyways, in January 2012 I got a phone call, and said there was another trial coming up, would I be interested. And I qualified for that one, and I agreed to go for it.

Andrew Schorr:

And that trial drug has been momelotinib. How did it work out for you?

Phil Arner:

It took care of all of the symptoms that I had. The fatigue, night sweats, the itching, the large spleen. It handled all of it for me, and it was five years of relative ease of the symptoms. So it was great.

Andrew Schorr:

Good for you, Phil. So you had a pretty full life during those five years?

Phil Arner:

Yes, it was. At that point I had very few symptoms. I had other issues, but the symptoms were taken care of. So, that's all I could ask of the momelotinib.

Andrew Schorr:

Okay. Now there's another part of your story, and this is something I think about as someone who is on a JAK inhibitor. And that is would you someday need a transplant? Things eventually did progress, and you did have a transplant, didn't you?

Phil Arner:

That's right. So it was September 2017 is when I actually had the transplant. And it was a tough eight months for me to go through the engraftment, for the blood lines to start coming up for me. But they eventually came up and everything was good after that.

Andrew Schorr:

All right. So how're you doing today?

Phil Arner:

I'm doing very well. I have no graft versus host to speak of, and lots of energy, and enjoying hobbies. I retired in ICU in the middle of the transplant, so that was kind of a nasty time. But since then my time is my own, and enjoying the family. It's awesome.

Andrew Schorr:

Good for you. And Phil, what day is this for you, post-transplant?

Phil Arner:

Day 1,015.

Andrew Schorr:

In your new life. Okay. Good for you. So one last question before we move on with the doctors, and that is, are you glad you were in a clinical trial?

Phil Arner:

That's an understatement. I'm sorry, this is going to make me really emotional. Yes, I was glad I was on the trial. It gave me time to get ready for the transplant. In 2012, I would not have done a transplant. I could not. I had no experience, no good experience with transplants, so I was totally against transplant at that point. And it took me the five years that I was on momelotinib to get ready for it. So you eat well, you exercise, you get in as good a shape as you can, and you go for it. And it took a little time for me to get ready physically and emotionally for the transplant.

Andrew Schorr:

So having a study drug that worked for you was a bridge to what was next?

Phil Arner:

Absolutely.

Andrew Schorr:

When you were ready for it. Well, we're delighted you could be with us and that you're leading a full life. Do you have children, or grandchildren?

Phil Arner:

Yes. I have three grown daughters, and when I was diagnosed I had one granddaughter. And now there's six. And I wouldn't have seen five of them I'm sure if I hadn't had gone on the trial.

Andrew Schorr:

Wow. This is pretty emotional. Not just for me, but with us are two MPN researchers and I'm sure it touches them. Let's start with you. Dr. Pemmaraju, this is what it's about, isn't it? Is that research can benefit somebody. Obviously approved therapies can help, but sometimes we're in a changing landscape and there maybe somebody in a trial and it really can make a huge difference.

Dr. Pemmaraju:

That's right Andrew. And thank you Phil for sharing these extraordinarily heartfelt and touching moments of your life. Not only for our viewers, but also for me and Dr. Palmer. There're many days where you don't know what you're doing, if it's working or reaching other people. And to hear your story, it moves my heart in a way I can't explain to you. So God bless you and congratulations to you. Andrew your point is very important. As our viewers and you know, research, clinical trials, are just that. They're research. So not every trial is going to lead to success. Not every trial is going to lead to an FDA breakthrough. But if we go in with open heart and as a partnership, that is doctor/patient, we're partners together. We go into it with open heart, and understanding yes, there are risks.

There could be some benefits. There could be some side effects. Some patients will be the very first to find out those things. But we do it together, and we learn from it. And maybe those lessons can be carried out to other patients afterward, that can be one bar. Especially in the earlier stages as we have said, Phase I and II. As we get into the later stages, Phase III trials for example, yes you do hope that a safety and toxicity profile is established, and we can go and establish that.

But I really appreciate Phil's point and yours, both as patients and now advocates, that we must understand the risks in the hope of clinical trials, neither oversell nor undersell them, and lives can change in front of our eyes. And we have to be open and ready for that. And to give it to other patients.

Dr. Palmer: And Phil, I want to mirror what Naveen said in terms of sharing your story. As an MPN researcher and as a bone marrow transplant physician it always makes me so happy to see this type of outcome happen. And I can really appreciate what you're saying about that five years because I've had a number of patients who I've taken care of for years, and like, "Okay, well when are we going to do transplant? What are we thinking of?" And having that time makes a world of difference. So I'm so happy to hear you had the opportunity to do that.

Andrew Schorr:

So, Dr. Palmer, you're in Arizona. Dr. Pemmaraju is in Texas. Both states as we do this live program have rising numbers of people affected by COVID-19, the coronavirus. And while you're cancer researchers, healthcare system is called upon a lot to treat patients, but yet we want research to move forward and you want to do it. So where are we now? Let's talk about the current situation. Doctor Palmer can you move forward with your research right now in MPNs, so that we can hope for cures, or at least better lines of treatment?

Dr. Palmer:

That's a great question. Well with regards to COVID and research, there's multiple areas that really this touches. I think first and foremost is the healthcare system.

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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