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The 5-Year Clinical Trial Experience of a Myelofibrosis Patient

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Published on September 29, 2021

Myelofibrosis Patient Shares 5-Year Clinical Trial Experience

Tina Cooper was shocked by a primary myelofibrosis diagnosis at the age of 47. Tina was predicted to have “three more years,” but the mother to two teenage daughters was just beginning her fight. Tina has participated in two clinical trials and regularly attends MPN conferences to learn about what trials might be in her future. Click above to hear her year-by-year experience of participating a five-year clinical trial.

Support for this series has been provided by AbbVie Inc.. Patient Power maintains complete editorial control and is solely responsible for program content.

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Transcript | The 5-Year Clinical Trial Experience of a Myelofibrosis Patient

Tina Cooper: In 2010, I was diagnosed with primary myelofibrosis. I was 47 and a female, so I didn't fit into the box of myelofibrosis. I didn't have a lot of the symptoms. I was very active. I have two girls in high school, and then I received my diagnosis on a fluke. I just didn't know I was as sick as I was. And then I went to MD Anderson, and then I was offered a trial and started that trial within two weeks of my formal diagnosis.

What Was Your Year-By-Year Experience of Participating in a Clinical Trial?

Tina Cooper: For the first year on the trial, it was kind of rough. So, this trial with the azacitidine (Vidaza), I had to every month see the doc, and then I would get an injection every 28 days for five days. So I would go to MD Anderson onto the clinic floor. And then I would receive my azacitidine Monday through Friday.

And then I had 28 days before I got my next round. I started the trial in January, and in May, I had to have three blood transfusions. After that, my numbers were doing better. Now we're into the second year of the trial. My numbers are better, not great. I haven't had to have another blood transfusion. I still want to be able to go golf and travel. And so I'm having a conversation with Dr. Verstovsek, And he says to me, "Okay, what do you want to do? How are you feeling? Where are your numbers at?" And so they were better. They weren't great.

So we trudge on another year. And by the third year, I'm running 9.8, mid-nines, up and down. And we just trudge on. In year four, I was much better. My numbers were moving up, not fast, but were moving up. My whites were normal. My platelets were normal. And I was back playing golf and traveling, doing the things that I really enjoyed to do, and just the daily living part of it. I could go longer and start walking farther, and I was running.

So now in the fifth year at a certain date, the trial ended for me because it was a five-year trial from the date you entered. So I'm at my five-year mark, and I had a choice. I could continue on with the same protocol, azacitidine and the Jakafi (ruxolitinib), same routine. And so, this coming month, I will have my 101 months of azacitidine and Jakafi. We're looking at eight plus years. About a year and a half ago, Dr. V said, I may have a chance to be in remission. So we did bone marrow biopsy and my JAK2 was still positive. And until that happens, till the JAK2 gene decides to behave, I am not considered in remission. I am continuing on with the course.

What Does Your Daily Life Look Like Now?

Tina Cooper: I do just about whatever I want to do. I go to the gym. I swim. I play golf. I hang out and scrapbook with my friends. I travel. During the pandemic last year, when the gyms were all closed, I was walking between five and seven miles a day because I believe that someday there is a chance I will still need a stem cell transplant. And so I want to be the healthiest I can be, the strongest I can be, for a better outcome of the stem cell transplant.

If at some time, the two drugs decide not to work any longer, and we all know that Jakafi usually only has a life of four or five years, and I'm like double that now, and I was offered another trial, I would be the first to sign up, for sure. Because I couldn't do what I do today if I had never accepted or decided to do this trial.

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