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My Journey With Primary Myelofibrosis

My Journey With Primary Myelofibrosis
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Published on May 20, 2021

The Next Step on My Primary Myelofibrosis Journey

Ned Weinshenker was diagnosed with primary myelofibrosis in November 2018. He first shared his story with Patient Power in How I Advocated for a Clinical Trial. He later shared an update in Participating in an MPN Clinical Trial During Coronavirus. This is the third in the series.

I am writing this while at the Logan, Utah Intermountain Healthcare Infusion Center receiving two units of packed red cells. It has been 18 weeks since my last transfusion and the previous one lasted 22 weeks! These intervals are much longer than previously experienced. For the first year after starting the MANIFEST clinical trial with Constellation Pharmaceuticals and receiving CPI-0610 (now known as pelabresib), I needed transfusions every four to six weeks. Then it stretched to 10 to 13 weeks. So, I take these results to be encouraging. Also, since I am getting less frequent transfusions, I have been able to stop iron chelation therapy and my ferritin levels are staying constant (still high, however). Lastly, I have seen a very slight improvement in the bone marrow fibrosis.Intermountain Healthcare Infusion Center

In January and February of this year, I received my two doses of the Pfizer/BioNTech COVID-19 vaccine with great relief. I had only minor soreness at the injection site after each shot. Very slowly, my wife and I are transitioning to the “new normal.” This means we are having occasional meals with friends who are fully vaccinated and also ordering more takeout meals. Just yesterday, I actually went to a restaurant with friends for a lunch meeting. Luckily, all were vaccinated and we were able to sit far away from others. It was a wonderful feeling to be together again in person.

I continued to drive to UCLA for my clinical trial appointments during the pandemic (May, August, October, January, and April), which was becoming stressful since it involved seven to eight hours of driving each day for four days. The only positive note in driving is the scenery along the way and the chance to listen to many audiobooks. I have included some pictures of the red rock and snowy desert in southern Utah and just over the Nevada border in California.

My Journey WIth Primary Myelofibrosis Travels1

My Journey WIth Primary Myelofibrosis Travels2

I also had an event that could have been catastrophic. Note the picture of the tire with the puffed-out sidewalls. On the leg of the April 2021 trip from Los Angeles to St. George, Utah, I was traveling at high speed without the knowledge of this damage. Luckily, I noticed it prior to my drive home the next day and was able to quickly secure a new tire in St. George before leaving.

My Journey WIth Primary Myelofibrosis TIreI am happy to say that I feel safe enough to resume flying for my next appointment in July. Let’s hope that a much higher percentage of the population will be vaccinated by that time. I find it quite distressing that so many in the United States are resisting getting vaccinated (even among healthcare providers). One of my real fears is that those people who choose not to get vaccinated will continue the spread of the virus, and with new transmission, there is a chance for additional mutations. If one of these mutations turns out to be resistant to the vaccine(s), then we will have a new wave and have to start all over again. That would be catastrophic.

I have been following all of the new information regarding additional clinical trials for primary myelofibrosis and am delighted to see how many new drugs, and repurposed drugs, are in clinical trials. Given the low prevalence of this disease, it is amazing and heartening how much attention it is receiving. We are very lucky that the pharmaceutical industry is paying attention to this unmet need. As previously mentioned, I have participated in a genetic study at UC Irvine under Angela Fleischman, MD. She has shared information with me about my own mutations and I have added this peripheral blood data to my spreadsheet, cataloguing all of my bone marrow biopsy data. Both of my sons have also submitted samples and we are eagerly awaiting results.

Due to the pandemic, the research has slowed but we are still optimistic that we will be able to see results and possibly patterns. During my last visit to UCLA, I was able to visit Dr. Fleischman. She was gracious enough to meet with me to discuss the ongoing studies. She asked me to be a part of a longitudinal aspect of the study, and I immediately, on the spot, submitted additional blood and saliva samples to be analyzed. Participating in any study that can generate data that will be helpful to eventually fully understand this disease and to develop potential therapies and cures is important — not only for me but for future patients.

~Ned M. Weinshenker


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