Read Time: 3 Minutes
By Ned Weinshenker
From time to time, Huntsman Cancer Institute invites guest commentary from our community. The views reflected in these commentaries are those of the author and do not necessarily represent the official views of Huntsman Cancer Institute.
Takeaways:
- After Ned was diagnosed with primary myelofibrosis, his doctor at Huntsman Cancer Institute helped connect him to a clinical trial.
- Ned now serves as a member of Huntsman Cancer Institute's Patient Advisory Council, where he brings his perspective to research projects.
Impact: At Huntsman Cancer Institute, patient voices help guide cancer research, ensuring discoveries are shaped by both scientific expertise and the experiences of people living with cancer.
In November of 2018, at age 76, I was diagnosed with primary myelofibrosis, a myeloproliferative neoplasm (MPN), by my local hematologist in Logan, Utah. Not knowing anything about this rare, chronic, blood cancer, I started educating myself on the condition and potential therapeutic options. I quickly found that it is critical to find a specialist in these MPNs.
A few weeks later I was at an event in Salt Lake City, where I happened to meet with Mary Beckerle, PhD, then-CEO of Huntsman Cancer Institute. As I wanted to find a specialist, I asked her to recommend a doctor at Huntsman Cancer Institute. She said she would look into it, and a few days later I heard from her office that I should contact Srinivas Tantravahi, MBBS, MRC, at Huntsman Cancer Institute. Within a week I had an appointment.
Dr. Tantravahi met with me and ran more tests, which confirmed the diagnosis. I quickly came to respect Dr. T and his knowledge of MPNs. We further discussed various options with the initial idea of “watch and wait.” I am not a watch and wait person! I asked about clinical trials, and he indicated that currently there were none in Utah.
Through online research, I found a trial that I thought might benefit me and prepared a decision tree listing all my options, including stem cell transplant. Together, we decided that a clinical trial being held at UCLA might be the best option for me. Dr. T helped me apply for the trial and I have been in it for over seven years and doing exceptionally well.
During this time Dr. T and I have become good friends. He asked me to help start an MPN support group that has now been functioning for several years. We have applied for grants together to fund a new approach to treating MPNs and potentially many other cancers. We have also participated in the Huntsman Cancer Foundation SportsFest together for several years.
This clinical trial was the first one to look at a combination therapy using an approved drug (Jakafi, then the standard of care) and a new experimental drug, Pelabresib. There was a very rigorous testing before I was admitted into the trial, but luckily, I met the criteria!
Almost immediately, my blood counts dropped and I required monthly red cell transfusions. In addition to blood counts, I had 25 MRIs to check spleen and liver size and 12 bone marrow biopsies to see how the treatment has affected the key hallmarks of the cancer. The good news is that my very enlarged spleen has returned to normal size, the fibrosis in the bone marrow is significantly reduced, and the driver mutation is now down to 3% ( from 55%)! I still have mild anemia but that is easy to live with.
My advice to other patients with this disease is “patients be patient!” Myelofibrosis is a cancer that develops slowly over many years, and it takes time to reverse the damage to the blood-forming cells in the marrow.
Earlier this year, Dr. T recommended that I become a member of the Huntsman Cancer Institute Patient Advisory Council. Over the past eight years, I have become heavily involved in patient advocacy, including as co-chair of the MPN Research Foundation Patient Impact Council. So, this request from Huntsman Cancer Institute was in my “wheelhouse,” and I accepted immediately. The ability to give patient feedback to grant proposals from Huntsman researchers is incredibly valuable. Patient input to plans, protocols, patient-facing materials, etc. has now been required of companies by the FDA. Bringing this approach to Huntsman Cancer Institute’s research arena is also very critical to successful patient recruitment and outcomes.
Given my seven and a half years in a clinical trial and having worked in the biotech/pharma area, I have a lot of experience to share with the research community. This is an extraordinary opportunity for both patients and researchers and I look forward to further opportunities to review proposals.
In my lifetime I have seen extraordinary advances in cancer treatments that could not have come forward without basic research into these diseases. Even as recently as 15 years ago there were no targeted therapies for myelofibrosis, and now there are several. It is through the efforts of countless researchers at Huntsman Cancer Institute and around the world, and critical NIH and NCI funding, that these advances have taken place
Through my various advocacy and research activities I hope that I am contributing to help make even more success in combating cancer.