Managing Myelofibrosis: Joan Yasko’s Stem Cell Transplant Experience

Choosing a path to a potential cure

Joan Yasko’s 30-year career in the pharmaceutical industry helped shape her day-to-day life after a diagnosis, life-altering symptoms, and curative treatment of myelofibrosis (MF). MF is a rare and chronic bone marrow disorder where scar tissue forms in bone marrow and disrupts normal blood cell production.

When she was told she had MF in 2019, she utilized her professional expertise and the resources available to her to make decisions about her own health care. She dug into learnings from MF clinical trials, available treatments, and potential treatments in the research pipeline, then she chose her preferred path forward, a stem cell transplant.  Two years later, at age 65, Joan says she would make the same decision today.   

The MF treatment decision-making process is a very personal one, with multiple factors to consider, like the overall state of your health. “Another variable is your willingness to take the risk,” Joan recently told HealthTree. Her advice for others comes down to this: “Are all of my health issues good to go? Am I willing to take the risk and go into that transplant as healthy as I can be, with as much positivity as possible?” 

Joan had experienced classic MF symptoms, including shortness of breath, “dramatic fatigue,” itching she didn’t realize was connected to her diagnosis, and night sweats.

“I mostly noticed in conversations and while exercising. I would have to stop and breathe differently,” she recalls. Initially, Joan didn’t think of her quality of life as being compromised, but in hindsight, she realized her symptoms influenced how she spent her days. “I would tell my husband I have to sit down, have to take a nap,” Joan says. Afterward, she would still feel fatigued, which she explains is very different than a tiredness that goes away when you rest.

As her symptoms worsened and she received treatments for anemia, tests showed an increase in blasts. Blasts are immature blood cells in bone marrow or blood, which can be a sign of progression toward acute leukemia. “I was headed to stem cell transplant. I got in the best shape of my life. I worked with a trainer and gained 10 pounds, just in case. I had decided to have a transplant and was just waiting for the right time. I personally would have liked to go to transplant sooner”, Joan recalls. 

Advocating for research and patient involvement

Two years after her stem cell transplant, Joan is doing extremely well. While a stem cell transplant may have been the right decision for her, it is not the case for all people dealing with MF. 

Now, Joan uses her professional and personal experience to make a difference for others affected by MF and other myeloproliferative neoplasms (MPNs). She is passionate about increasing awareness and understanding of clinical trials, improving patient recruitment, and ultimately increasing participation. She is also very interested in helping to shape MPN research, as a member of the MPN Research Foundation’s Patient Impact Council.

You can also help advance research by participating in real-world data studies through HealthTree Cure Hub®. By completing simple surveys, you provide important insights into the experiences of individuals living with MPNs, which can improve outcomes for others. 

Join HealthTree Cure Hub

Source:

• MD Anderson: 7 things to know about myelofibrosis