Here we go again. It’s time to revive the blog. Now if you want the latest updates you don’t have to wait for me to send out a bulk SPAM message but can just check here.

For three years I was the poster boy for Carvytki CAR-T. I suspect my pre- and post-treatment PETT scans were shown at meetings. By late 2019 I had multiple bone hot spots as well as infiltration of kidneys and liver (organ failure as well as anemia beginning to show in blood work). I was dying, and not very slowly. A few months later the scan was completely clean and everything was recovering. Not making any antibodies at all, I did wear a mask and continue on acyclovir and periodic infusions of pooled donor IgG, but needed no poisons at all. I’m one of the few who could say that 2020 was a huge improvement on 2019.

With monthly blood testing, in June of 2021 there appeared barely-detectable evidence of myeloma recurrence, but it vanished again after a few months. It was as though the CAR-T warriors decided to take a summer vacation but then got back on the job. Things went so well that summer of 2022 I got kicked out of the original study and entered in the CARTINUATION protocol, which required only annual testing. We decided quarterly made more sense. Wouldn’t you know that just before that decision, there had been trace indications that my normal B-cells were beginning to make IgM, so maybe there was an oops. By September creatinine was up to 2.5 and hemoglobin down to 11.4, and repeat testing the next week was even worse with a new M-spike of 2.3. PETT showed massive nodal infiltration of the mediastinum and perivascular left retroperitoneum and pelvis, and extensive invasion of the left perirenal fat. We hammered 4-drug chemotherapy and two weeks of M-F radiation trying to salvage that kidney. Not fun, but worth a try.

I was all scheduled to enter the HPN217 trial November 30th, but that was contingent on improved renal function. I don’t know who was in charge of choosing company names, but I’m not sure the customer relations folks think it’s such a great idea to invite patients to get Harpooned. Not feeling particularly whale-like these days, I was nevertheless happy to get poked.

Today things turned weird. Yes, my kidneys are a little better (Cr 2.0), and the PETT shows shrinkage of the tumors (with increased metabolic uptake suggestive of continuing inflammatory response to the radiation), but now all my myeloma numbers are quite a bit better, too. So I am no longer unresponsive to conventional therapy and therefore no longer eligible for HPN217. You can’t make this stuff up.

Current plan is to continue a more tolerable chemotherapy regimen for a little while. When I inevitably progress on that there may be another slot for me in HPN217. Another option would be to do nothing and become eligible sooner, but that slot is not guaranteed (I’m apparently at the top of the waiting list but who knows?). Meanwhile, the Mayo is getting closer to opening another slot in a study of elrantamab and their bureaucracy is grinding away at how to give teclistamab so a little temporizing seems in order. The uncertainty is killing Nancy but she’s a tough one.