BY CYNTHIA CHMIELEWSKI
Myeloma warrior, fierce advocate and my friend Lizzie passed away last week. I am still shocked and saddened by this news. Lizzie was young. She was a fighter and well educated about myeloma. Lizzie was full of life! She sought the advice of several myeloma specialists and participated in clinical trials. She ate healthy and exercised. She did everything right. How can she be gone?
Lizzie's myeloma was aggressive and didn't respond well to treatment. No matter what protocol Lizzie tried her myeloma returned, often with a vengeance. Although a lot of progress has been made in the last decade in understanding the biology of myeloma and developing new therapies to treat this cancer, more research is needed to help researchers fully understand the various subgroups of myeloma and how to best treat each unique subgroup. We must do more so people diagnosed with high risk myeloma live long lives and die of old age.
How can we do more? We can use our voices to debunk the common myths associated with clinic trials. Trial participants are NOT guinea pigs and clinical trials are not the last resort. Clinical trials provide us with opportunities to gain access to forward thinking medicine. Cancer patients do not receive placebos when participating in a clinical trial unless the standard of care is no treatment. When you enroll in a clinical trial you become a partner in research and receive the best possible care.
Clinical research is expensive. We can do more by helping to fund myeloma research. We can actively participate in fundraising campaigns. Every dollar helps. It doesn't matter if you host a bake sale or a 5K. Whether you raise 20 dollars or 10,000 dollars, every dollar counts. Think of creative ways that you can raise money for myeloma research. It will make you feel better. (Editor's note: Consider donating to the Myeloma Crowd Research Initiative, funding two immunotherapy projects for high-risk myeloma patients.)
We can also do more by advocating for increased government funding for biomedical research. Sign up for action alerts from cancer advocacy groups like the IMF, ASH, the LLS, AACR or the ACS. Send emails to your congressional representatives or write personal letters explaining the need for biomedical research. Phone their office and share your stories. Better yet, arrange a face to face meeting with your representatives while they are home in the summer or visit them in Washington, DC! Participate in the Rally for Medical Research either in person or virtually! Patient stories from constituents are very powerful. Have your voice heard and share your powerful stories.
We can do more by asking about clinical trials and enrolling in them when they provide a viable treatment option for us. Less then 5% of adult cancer patients that are eligible for clinical trials actually enroll in one. The reasons are varied. According to the National Cancer Institute if 10 % participated, studies could be completed in 1 year instead of the 3-5 years the studies currently require. It's important that WE ask about what trials are available for us when we are at treatment decision points. About 25% of myeloma trials close early due to lack of enrollment. Sixty percent of patents under age 29 diagnosed with cancer are enrolled in trials and look at the advances that have been made in pediatric cancer over the last 30 years! Research saves lives. Find all clinical trials you are eligible for here.
We can do more by educating ourselves and actively participating in our healthcare. The age of precision medicine is upon us. The next time you need a bone marrow biopsy, ask to have genetic testing done. Get a MyPRS gene expression profile analysis or a NGS Heme mutation panel done on your bone marrow aspirate. Then share your data! Large sets of shared genomic data paired with response to treatment an provide answers and accelerate a cure.
We can do more and must do more as a tribute to all the myeloma heroes that are no longer with us to have their voices heard.
about the author
Myeloma survivor, patient advocate, wife, mom of 6. Believer that patients can help accelerate a cure by weighing in and participating in clinical research. Founder of HealthTree Foundation (formerly Myeloma Crowd).