I have many friends with multiple myeloma and they range from people who want to know nothing about their disease to those who have paid to have their genome mapped. Consistently, I see that patients who dig in and understand their disease have better outcomes. Knowing your myeloma genetics is a perfect example. I spoke recently to a husband and wife where the wife was dealing with myeloma and being seen by a local oncologist. They were aware that specific genetic features could be present for her myeloma, but hadn't yet had a genetic profiling test done. They wanted to wait until they felt doctors would know what to do with it. I encouraged them to get it done while she still had active disease as one more piece of knowledge for her myeloma puzzle. Five years ago, doctors may not have known what to do with the information, but that has changed. Specific molecular targets are coming and we are entering the age of personalized medicine. To ask intelligent questions of your doctor, you need to become curious about your own disease - there are several different "types" of myeloma. As my doctor says, "Myeloma is the enemy and we want to know as much about the enemy as possible so we can create an effective plan of attack." Dr. Robert Hromas, hematologist at the University of Florida College of Medicine gives a great explanation on Patient Power of what patients can and should do to direct their own care. Doctors are ready and willing to help, answer questions and help do research. They can only do that for you if you come in prepared. Would they really respond to a question like "What clinical trials are open for my del17p?" I think they would, but you won't know until you ask. And if they don't, it's your life! It may be time to get a second opinion or see a myeloma specialist.Advice From a Hematologist on Taking Charge of Your Health from Patient Power on Vimeo. Taking charge begins with knowledge, and even learning a little every day will improve your myeloma journey. Get started by reading more about gene expression profiling, myeloma clinical trials, or news articles about what's happened and what's coming. Your best outcome may be waiting on YOU.
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 Myeloma Crowd by HealthTree and the HealthTree Foundation.