November 2022 Update: 6 years
Hi folks, I’m still alive.. :) I think I’m over the median survival rate now. When we started this journey, 10 years was the goal, but as we’re approaching that number and after talking with several doctors and friends in the community, I think it’s realistic to move the goal posts. I decided this year to start planning/living my life as if I have another 10 years. That would put me at 58, with a stretch goal of getting to 60. With all the new treatment options coming out, I’m feeling pretty good.
Speaking of treatment, I have been off all medicine now for about 6 weeks. I was taking 10mg Revlimid in a standard 21 days on/7 days off, but my doctor and I agreed to stop it as we’re not sure it’s working, and it comes with a higher rate of secondary cancer, plus other minor annoyances that build up over time. I’m happy to report I’m feeling much less “space brain” now, but my GI issues haven’t fully resolved yet. 💩(for more TMI: I’m having a colonoscopy in December.. FML)
Being off Revlimid, I let myself get some sun for the first time in 6 years when we went to Spain and Egypt this month.
Lab-wise, over the past 19 months my M-spike has gone from “detected but not quantifiable” to 0.3 g/dL, then back to “not quantifiable,” back to 0.3 g/dL, and now sits at 0.2g/dL. My doc thinks I have a “secondary MGUS,” which I replied “MGUS is Monoclonal Gammopathy of Undetermined Significance… Haven’t we determined that this is significant?” Well, no actually. Hard to tell, but the clone that’s sticking around might not be the one I was diagnosed with.. I had/have 4 clones on my BMB, so maybe this is one of the others that is well behaved? Very curious, but people that have a secondary MGUS seem to fare better…
Speaking of my bone-marrow biopsies.. The one from December of 2021 came back at 896 parts per million (PPM) Minimal Residual Disease (MRD). The one I just had in November came back at 2263 PPM. As I mentioned before, my doc says that as a general rule of thumb, you’d expect to have a clinical relapse about 13 months after you hit 6000 PPM. So if you’re scoring at home:
Aug 2017 (right after SCT, started KRD consolidation): 153
Feb 2018: 24
Aug 2018: 24
Feb 2019: 43 (ended KRD consolidation in March 2019, started Rev Mainenance)
Feb 2020: 323 PPM
Nov 2021: 896 PPM
Nov 2022 2023 PPM (ended Rev Maintenance in Oct 2022)
Eyeballing that, seems like I’m likely to be ok for awhile, but that doesn’t account for me now not being on Revlimid.. If it actually was working & slowing the progression, I’d expect it to keep accelerating.
We’ll have plenty of good options for what to do if/when I relapse, with the leading candidate being something like Dara/Pom/Dex possibly combined with another Stem Cell Transplant. Maybe if I hold out long enough some of the CAR-T treatments will be available in first relapse, which would be my pick. Nice to not have to worry about that for awhile, I’m very lucky.
And now for what you really came here to see:
