"How are you feeling about all this?"
I get a variation of this question at least once a week from friends, family, and medical professionals.
My answer - optimistic.
There is more attention on cancer and research funding for this range of diseases - especially with the President's desire for a "Cancer Moonshot" program.
I have also noticed that research and approvals cycle for new treatments has sped up since COVID. The FDA accelerated approval of many of the medications treating the more unusual lymphoma variants.
For people with fast-moving and rare diseases like me, these are very good things.
I'm doing well on my current medication. The longer I can stay on this medication - the more time for the current research to bear fruit, the better my chance for long-term, high-quality survival.
My one job for 2023 - get as healthy as possible and do what I can to support my body. I'm buying myself some time for the treatments and research to mature and for new options to become available.
These presentations are patient-focused and discuss the current state of the research (as of October 2022) and treatment.
Lymphoma Oral Therapies Access and Toxicity (48 minutes) - The first half talks about BTK Inhibitors (the type of medication I am on) and how they work. These medications won't "cure" me, but they will allow me more time and higher quality of life.
Immunotherapy Beyond CAR-T Cell Therapy (44 minutes) - This is an excellent overview of how immunotherapy works, particularly with lymphoma, and provides a brief survey of the state of the research. Unfortunately, it didn't answer the question for me of "what happens after CAR-T."
The LRF also just posted their summary of the 2022 American Society of Hematology annual meeting (1 hour). This is a good overview of the state of Lymphoma science today.
The fact that researchers have hit on fertile threads for investigation, and that their findings are quickly appearing in the clinical setting, gives me hope that I will be able to happily live with Mantle Cell Lymphoma for a long while - even if a cure isn't found in my lifetime.