It was a tremendous honor to attend the American Society of Hematology (ASH) conference again this year. The International Myeloma Foundation (IMF) was the first organization to ever sponsor patients at this conference. They have always understood how important it is for myeloma patients to be educated about the disease and their treatment options. A couple more organizations now bring a few patients, but the number of patients still a minuscule compared to the over 30,000 doctors in attendance. The researchers are passionate about their projects and are motivated by the help they can bring to patients. However, they don’t have myeloma so their lives don’t depend on the success of their research. Our lives literally do depend on their discoveries – from improved testing, monitoring, and treatment options.
Not every patient can attend ASH, but every patient can take advantage of the many resources that come out of the conference. You can personally apply this information to your situation and gather questions to discuss with your myeloma doctors. You can be more prepared when a treatment decision is at hand. Once again, the IMF takes the lead in providing many resources that summarize the latest and most important developments. I urge everyone to take advantage of all of these. Links to the IMF’s ASH coverage are listed below:
- IMF ASH Symposium Replay: “Approaches to Achieve the Best Possible Outcomes in Myeloma.”
- Post-ASH discussion with Drs. Durie, Mikhael and Mateos
- Quick 5-minute interviews from myeloma specialists at ASH on key abstracts
- Patient/Support Group leader perspectives from ASH
In addition, if you don’t already participate in a patient support group, I urge you to seek out one in your area. The benefits of the programs presented at support groups and the interaction with other patients and caregivers can be invaluable. You can search using this link https://www.myeloma.org/support-groups
There are so many new and promising treatments on the horizon. Many of the treatments available now didn’t exist when I was first diagnosed and now there are new approaches to fighting myeloma in development. I’ve been through several treatment regimens and I continue to benefit from all the research and look forward to discussing future options with my specialist in January.
Linda Huguelet, Chattanooga Multiple Myeloma Networking Group