“The only way we can move forward to find a cure is through research and clinical trials. More and more health professionals are dedicated to this cause as is the MPN Research Foundation members and donors... These two trial drugs have given me 8 goods years. Many days I feel so good that I forget I have MF. My doctor said that I have gotten a lot of miles out of these two clinical trials. Without them, the foundation and donors, and the men and women in the laboratories, I and others like me might not even still be alive.”
Holding on one trial at a time
*This story is a patient's first-person experience and is not an endorsement of any drug or activity by MPNRF. Please consult with your physician (preferably an MPN specialist) before making any therapy or lifestyle change.
Barbara Plumb has owned and operated The Amazing Alonzo Paperback Exchange in Duluth, Minnesota since 1982, and has been living with an MPN since 1999. In 2010 when her hemoglobin dropped it was confirmed she transitioned from ET to MF. Barb’s biggest challenge now is fatigue, but at seventy-four, she still manages to work at her bookstore three days a week and says besides needing more rest she is doing quite well. Her shop, after all, is one of her favorite places to be. It’s where Barb enjoys chatting with customers who have over the years become good friends, and where she also sells hats she crochets.
Despite having MF Barb is optimistic and looks for the good around her; cancer has taught her to be appreciative. She finds comfort in an online support group and loves to be around her family. Barb has two grown children, two grandchildren, and a dog Finney who is always by her side. She’s also grateful for her Mayo Clinic team, who she knows quite well, as she has traveled there sixty-five times so far. At 450 miles round trip, you could say Barb has put some miles in managing her MPN.
Her advice to others with an MPN, “Take care of your physical body. See people, exercise, eat well. Life is good. Life is now. Seek out as much of your favorite things and people as you can...It isn’t easy, but don’t give up.” She also suggests MPN patients see a specialist and consider a clinical trial.
Barb knows a few things about clinical trials too. Unlike many MF patients, Barb doesn’t have the typical MF symptoms as she has never had an enlarged spleen, bone pain or itching. Her anemia, however, requires monthly blood transfusions. While Jakifi wouldn’t help her, she is fortunate to be participating in clinical trials for best outcomes. Thus far Barb has participated in two clinical trials through the Mayo Clinic and is very fortunate to have had success with both. In her first clinical trial, she successfully took Momelitinib for five and half years before it stopped working, and is currently participating in a trial for Alisertib which she has also had success with.
“The only way we can move forward to find a cure is through research and clinical trials. More and more health professionals are dedicated to this cause as is the MPN Research Foundation members and donors... these two trial drugs have given me eight goods years. Many days I feel so good that I forget I have MF. My doctor said that I have gotten a lot of miles out of these two clinical trials. Without them, the foundation and donors, and the men and women in the laboratories, I and others like me might not even still be alive. ” She says.
For Barb, clinical trials are a lifeline. Barb isn’t a stem cell transplant candidate and is hopeful when the Alisertib trial ends she will be able to continue on with the drug. As she says, “ I’m one of the lucky ones. I’m not sure when the study will end... but Alisertib is being used with great success for other cancers at this time. That being said we are hopeful that I and others with MF who are on it successfully will be able to continue to get it. At this point, I am told there is nothing else in the pipeline for me…” But with donors’ support and continued research it doesn’t have to be that way, perhaps 2019 will offer more clinical trial opportunities for patients like Barb, patients who are managing to hold on despite the odds stacked against them.
Contributed by Jennifer Acker
These represent first person accounts of real people living with Essential Thrombocythemia, Polycythemia Vera and Myelofibrosis. It does not represent the views or opinions of anyone associated with the MPN Research Foundation. Please consult your doctor before taking any action to manage your health.