7 year update
Yesterday was the 7 year anniversary of my diagnosis. Yay?
I’ve now been off of all medicine for close to 14 months, and my M-Spike is holding steady at 0.4 g/dL. I had my annual bone marrow biopsy earlier this month (with sedation this time!), and was bracing myself for the result. You’d think that after such a long time off of medicine it would go up quite a bit.
As my loyal reader (hi mom) knows, I was at 2263 PPM in last year’s test. The result came back last week at 1163 PPM. That’s not a typo, it went down by nearly 50%.
Here’s the history:
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: 2263 PPM (ended Rev Maintenance in Oct 2022)
Nov 2023: 1163 PPM
So other than stopping Revlimid in 2022, I also have been making an effort to get back into shape and eat well. Rachel and I started back with Crossfit in May, and while it has kicked our butts, we’re both in much better shape now (and it shows). I’d venture a guess that I might be one of the most fit almost-50-year-old cancer patients ever.
It’s not all good news though, some troubling news dropped yesterday about CAR-T therapies that we’ll be following closely. Most cancer treatments come with a secondary cancer risk, so it’s hard to say if this will be a big deal or not. It’s ironic that if your cancer treatment works, you could get an entirely different cancer as a bonus. This just highlights how we’re still in the dark ages of medicine.. Lots of improvement needed. My job is to stay healthy long enough to get cured. I’m working on it.
We have done a ton of travel this year: Japan twice, Europe 4 times, and some random trips here and there in the US.
Hoagie and Pickle are best friends now, and there’s almost 0 beef between them now that Pickle is on meds. Tofu had surgery in May to repair his leg that he broke when he was about 6 months old. The metal fittings were removed, and he’s back to full mobility and playfulness. Life is good.
