A diagnosis of terminal disease such as myeloma makes us question our place in the universe. It may sometimes create an emptiness and despair that may seem to only get worse with the uncertainty of treatment and outcomes.
As of the 2016 58th American Society of Hematology (ASH) meeting, myeloma is not yet curable. All men before us have done it, and all men after us will do it: Die. So the question is not will we die or will we die of myeloma. The question is what can we do to live with myeloma for as long as possible with the at most quality of life as possible? At the same time, what can we do to give back, thumb our noses at myeloma, and make the lives of fellow myeloma patients as spectacular as possible? I submit to you our living well with myeloma depends on:
- How we choose to respond to our diagnosis and ongoing challenges of living with myeloma
- Who we choose to build relationships with through our journey with myeloma and
- What kind of knowledge we will acquire while living with myeloma!
This year’s ASH meeting is about furthering our understanding of myeloma, the available diagnosis and treatment options so we, patients, can have an educated discussion with and further our relationships with our hematologist(s). The goal of the 14 IMF support group leaders attending ASH this year is to learn as much as possible and create a ripple effect of knowledge and awareness throughout the myeloma community.
When I attended ASH as part of the IMF team in 2006, I went back home with a slightly larger brain from the information overload I experienced at this prestigious event!
IMF Support Group Leaders Attending ASH 2015
In 2006, as part of the IMF Satellite Symposium, I heard Drs. Durie, Barlogie, Boccadoro, Harousseau, San-Miguel, and Rajkumar argue about “Innovative Strategies for Treating Myeloma.” Dr. Vincent Rajkumar indicated that Velcade, Revlimid, and Thalidomide have emerged as effective frontline therapies for both new and relapsing myeloma patients. He stated that Thalidomide/Dex has been used as a very effective induction regimen that does not limit future treatment options including Autologous Stem Cell Transplant. He also indicated that Revlimid/Dex and Velcade/Dex are two other “combo” drugs that are showing a very good Complete Remission, Progression Free Survival, and increased Overall Survival.
ASH 2015, was labeled “A November to Remember” to mark the approval of 3 new drugs for the treatment of multiple myeloma in the month of November alone. That year, in total 4 new drugs, in 3 different classes, were approved for the treatment of myeloma. Boy, how much have we come in just 10 years! We now have nine novel agents for the treatment of myeloma (Darzalex®, Empliciti®, Revlimid®, Pomalyst®, Thalomid®, Ninlaro®, Velcade®, Kyprolis®, and Farydak®).
- Clinical trial results such as CASTOR/POLLUX further resulting in the approval of those approved drugs further up in the treatment chain
- The NCCN endorsing the updated IMWG consensus guideline on the use of MRD testing by revising its practice guidelines to include Minimal Residual Disease (MRD) testing,
These are just two examples showing the focus in 2016 has been learning how to use these approved drugs in various setting.
In addition, increasing the quality of life of myeloma patients, without sacrificing efficacy, is one of the things that researchers are doing to help myeloma patients live with myeloma. The clinical trial studying the subcutaneous administration of Darzalex is such an example. There is a session scheduled to present the intermediate results of that study.
IMF’s Satellite Symposium, IMWG working breakfast, Oral and Poster presentations, IMWG Conference Series webcast, networking and comradery along with sleeplessness are some of the things I look forward at this year’s ASH. As in 2006, this year again, I expect to come home with my head a little swollen from all the information I gather at yet another great meeting.
Sharing the Hope!
