It’s the year 2020 which is a notable year for reasons beside being a global pandemic. For me, 2020 marks my 20th year of survival with multiple myeloma. I am deeply grateful for all the research that has taken place and hopeful for the future of myeloma, all while waiting for a cure.
In 2000, treatments were extremely limited and survival rates were only 3-5 years. Today, with so many novel therapies being approved, it is crucial for us to keep up with the pace of research by learning all we can to have the best conversations with our doctors. The IMF was the first organization in the myeloma world to bring patients that are support group leaders to attend ASH. As patients, we can share our experience and understanding at a different level with other myeloma patients and caregivers. The IMF also interviews dozens of myeloma specialists and provides videos on key abstracts and overviews. I encourage you to check back on this ASH20 page often to read the patient blogs and view the many videos. Take notes and then perhaps on an upcoming visit with your healthcare team, ask some questions about how this new information may pertain to you and your future! It’s always a positive way to stay informed and prepared.
The below is a slide from a recent presentation by Beth Faiman PhD, MSN, APRN-BC, AOCN, FAAN Adult Nurse Practitioner, Cleveland Clinic Taussig Cancer Institute and member of the IMF’s Nurse Leadership Board. In 2015, it was a “November to Remember” with drug approvals. 2020 may not be the best year, but we’ve had two additional drugs approved to add to our arsenal: Isatuximab and Belantamab.
In my opinion, data and experience PLUS patient preference are key to discussions with our myeloma healthcare team. Knowing your goals and understanding treatments and side effects can significantly improve your happiness and quality of life.
This year, I remain excited to learn more about BiTEs (Bi-specific T-cell Engagers), mABs (monoclonal antibodies), ADCs (Antibody Drug Conjugates), CAR-T therapies. I’m looking forward to the latest research on BCMA (B cell maturation antigen) as well as new targets.
I hope to share with you my patient perspective through blogs and look forward to sharing the information and resources with my local myeloma support group members in Connecticut. We are the CT Multiple Myeloma Fighters Information Group. Since March, the IMF has provided a virtual meeting platform for all US myeloma support groups to use. This helps to keep us safe and physically distanced, but to remain socially engaged and informed. Check the IMF’s website for a group near you, or now that groups are meeting virtually, you can attend a virtual meeting anywhere! Click here to find a myeloma support group.
This year’s ASH experience will be different than any other year. I’ll miss the networking opportunities and camaraderie, but happy to be home and safe! Most years, this is what the Halls of ASH look like:
Talk about standing so close!
I have a tradition of including rock songs with my blogs.
Today’s song is from the 1980’s
“Don’t Stand So Close To Me” by The Police
The lyrics are not about a pandemic, but I sure like the title!
Link: https://www.youtube.com/watch?v=KNIZofPB8ZM&feature=emb_logo
Fun Fact: Sting was a teacher prior to being in The Police.
