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MPN Patient Shares Clinical Trial and Transplant Story

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Published on June 23, 2020

How could being on a clinical trial help you? Should you consider a stem cell transplant?
 
Myelofibrosis patient Phil Arner from Ottawa, Canada, shares the story of his diagnosis, his experience participating in the Phase 1 trial of momelotinib and how he got past his fear of a stem cell transplant. Tune in to watch his emotional thank you to the researchers of his clinical trial drug and his advice to fellow patients.

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Transcript | MPN Patient Shares Clinical Trial and Transplant Story

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.

Phil Arner:

My name is Phil Arner. I live in Ottawa up in Canada and I was diagnosed with myelofibrosis back in April of 2011. Before that time I had experienced the night sweats, the itching, the large spleen, fatigue but the times that I had those were fairly erratic and far between. So I didn't really think very much of them. I just kind of lived with it. One day in February of 11, we were donating blood. The Canadian Blood Services asked if I was interested in donating platelets and I agreed. They took a blood sample. The testing of that blood sample came back that platelets were low and they really couldn't accept me as a donor anymore. So go to the doctor and don't bother giving blood anymore.

I went to my GP and I was quite lucky. Most people have a hard time finding a doctor that knows anything about myelofibrosis, but I believe my GP had an uncle that had myelofibrosis. When he saw it on my numbers, he knew exactly what he was dealing with. He sent me off for an ultrasound, had some more blood work done, and I was right off to the hematologist at the Ottawa Hospital. The doctor at the hospital wanted to make sure it wasn't something relatively treatable like CML. So he did the biopsy but right from the first biopsy, I was a three plus fibrosis and I was well along in the myelofibrosis progression. So I was in a fairly bad state at that point. I sought out a close expert, who was at Princess Margaret in Toronto, Princess Margaret Hospital. I went through their intake process and, at that point, there was no trial that I was eligible for. The Jakafi was going through its later trials but you needed to have a platelet count of at least a hundred. I was running 60 to 80, I believe. It's in that range anyways.

So in October he basically told me he had nothing for me. In January, he called and said there was another drug on the horizon. It was momelotinib, CYT387 at that point. That was one that, I think you had to have at least 50 in terms of platelets and I qualified, was I interested? I was there within 48 hours banging on his door to get into the trial.

My first doses of momelotinib, as a phase one to determine dosage, I got a double dose and that set my numbers a little squirrely. They had to take me off the drug for a while. When I went back on it at the normal dose, it worked very well right from the start. It shrunk the spleen, I had a reasonable bout of energy, no more sweats, or itching. So it handled all of the symptoms very well. That progressed for five years. I would go to Toronto every three months, get my little bag of pills and go home. It was great.

Then after the five years, the drug started to lose its effectiveness. The spleen started to grow and I think the criteria for coming on for the study was a 50% increase in spleen size, which I attained fairly quickly in 2017. By that time Jakafi was approved, but I could not take a reasonable dose of that because of my low platelets. So Jakafi was not an option and I was running out of options.

I think it was around March of 2017, that's when I made the decision that I had to go for transplant. First of September was the transplant. The transplant, for me, was very difficult process. Within the first month, I think I picked up pneumonia and by about day 60, I think I had CMV. That was a really nasty virus to pick up. We talk about corona, the virus these days as a novel virus. Well, when you've had a transplant, any infection is novel and it's life threatening. I think I went through several of the viral, bacterial, fungal infections.

I went through eight months of trying to get the engraftment going again. And about day 250, my numbers were popping up and I eventually came out of the hospital at that point. Extremely weak, lost a lot of weight, and then I started the rebuild process. I have absolutely no complaints at this point. A lot of folks will go through a graft versus host. Some relatively mild, some very serious, some debilitating, but for me, there's none to speak of. So I've been extremely blessed from that perspective. Life is full at this point and it's great.

I'm not very articulate when it comes to generating thank you’s but what I will say is, at diagnosis I had one granddaughter. It gave me considerable time to think, get ready for the transplant. Over the five years that I was on momelotinib, I grew stronger and got to meet five more grandkids. I guess the biggest problem for me is it was a constant reminder. At diagnosis, when you're told you have two to five years to live and the symptoms are basically a constant reminder of what's to come. What you don't know, which made it extremely difficult is you've got two to five years but you don't know what the quality is going to be in that two to five years. So, okay, you got two years but is it one good year or one bad year? You just don't know. The bad part about it is you don't know what the future is other than the fact that you know it's limited.

For me, when I was diagnosed transplant, to me, was the equivalent of death. That was it. That was the end. So I did not see that as an option at the beginning. If I had some life, then it's better than going to transplant and giving up whatever you had remaining. That, to me, was my thought process at the beginning. Over the five years, I got to meet a few people that had been through transplant and some had a good life, some didn't. I wasn't ready for transplant and I had to build up my physical and mental depth in order to even get ready for the transplant. In early 2017, when the trial drug started to fail, the constant reminders returned. I've been an electrical engineer through my whole career and probabilities and reliability was a big part of the career. I knew what probabilities were. In March of 2017, I just said to hell with the numbers, I'm going for it.

For the most part, I think the trial was a good thing. If you have MF and your back's against the wall, for me, it's a no brainer. You go for it. I'm grateful for the opportunity to go on the trial. Obviously, things don't always go the way they should but having said that, no one is trying to make that happen. So everyone's going in with the best intentions and I certainly did not have any reservations on going on the trial. When I signed the original forms to go on to the momelotinib, I knew what the expectancy was for all of the side effects that they knew of. It wasn't a problem for me. There was nothing there that said I wasn't going to make it so it was a no brainer.

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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