I was diagnosed with Multiple Myeloma/Plasma Cell Leukemia (MM/PCL) in November 2022. For a solid 2 months, I was a bit paralyzed by my diagnosis, and the induction road was rocky. Yet, eventually, things smoothed out and I started my quest to learn all I could learn and then started reaching out to help others. As an RN, my learning curve was a bit shorter than most, but there is SO much to learn about MM! I’d say at this point, I have a decent understanding of the disease, but there is always more to learn and thankfully new information/treatments/medications keep coming. I am so honored and excited to attend ASH with the IMF as it is the ultimate meeting in Hematology/Oncology and, being the nerd I am, I can’t wait to learn and share!
My goal as an IMF Voice at ASH is to learn as much as possible and share that knowledge with all my fellow MM Patients. As a high-risk patient myself, I’ll put an emphasis on presentations that focus on the high-risk population. I am also very interested in how MRD (Minimal Residual Disease) testing may affect or change the landscape of MM treatment and research studies. I have experience in research, albeit as a cardiac research nurse, so the potential of MRD Negativity as an endpoint to facilitate research intrigues me. Another area of personal interest is decreasing the dose of dexamethasone. I’m not sure if this topic, will be discussed but if it is…I’ll be there. I was one of those people who took 40mg of Dex for 5 days; and yes, it made its mark in a very negative manner! And finally, I look forward to what’s new and on the horizon.
I have found that even when you think people understand the MM Journey, they don’t. I’m sure we all have people who we have explained MM to only to have them say a few months later “So, when are you finished with chemo”? If my attendance at ASH can help others better understand MM, while also helping to keep my fellow MM patients updated, then it’s a huge win/win! The biggest fear I had when I was diagnosed was that I would lose my ability to help people. My involvement with the IMF has given me the ability to regain what I cherish most in life…helping others! So again, I thank the IMF for this amazing opportunity to learn from those who work so diligently for us all! In the words of my MM Specialist: “the longer I keep you alive, the longer I can keep you alive.” I am sure that sentiment is in the minds of all these amazing scientists, and I look forward to learning from them all! SCIENCE, IT’S LIKE MAGIC, BUT REAL!
~Terry Glassman~
@TerryGlassman
Excited to read your blog! So much valuable and exciting information comes out at ASH.
I also have high risk mutations and my mm is non-secretory. I look forward to following along through your blog posts. Is there a way to subscribe to them specifically? I was a blogger until the month before my diagnosis in June of 2020. I’m still waiting for my muse to reawaken.
Hi Suzanne, SO sorry, I didn’t notice people could comment until today!! This is the only site for the blogs and they are pretty much done now that ASH is over. I didn’t post much on high risk because there was not much specifically geared to only high risk. What I can tell you is that there was a lot of talk about including high risk patients in more studies and evidence that is being done. I will share the couple of abstracts I did find shortly.