Day 2

The homeopathic dose was uneventful. I survived the Benedryl premed because they let me have some lorazepam to keep me from jumping out of the bed. Total boring time about six hours because we waited for labs to come back, then IV start (for just in case rescue), then two hours observation. Next dose day I’m bringing lunch.

Mayo is pioneering at-home monitoring instead of admission for observation. We have a tablet, with a NIBP machine and pulse ox bluetoothed in and a SIM card connection to the Mayo Cellular Therapy floor. Five times/day we take vitals (have to enter oral temperature manually), then speakerphone into their hotline for a mental status exam that includes Nancy relaying how well I perform simple functions. Finally, the nurse gives me a sentence to write and we message them a photo of the result. My handwriting and fine motor function took a hit all by themselves about six months ago, so I’m a bit shocked at the results, but they’re only looking for further deterioration.

Since one of the checkin periods is 23:00-MN I may be doing more updates like this before I can fall back to sleep. Especially with the dexamethasone premed on dose nights and the night after. Wish me luck tonight…

Day -4

Well, once again it appears disappointment has resulted in what is probably a preferable alternative. A mandatory step in CAR-T protocols is lymphodepletion with conventional chemotherapy (Cytoxan/fludabarine) prior to the reinfusion. Last time around it took a good 6 months for my bone marrow to mostly recover, and it seems plausible to me that the qualification “mostly” is the reason for the “out of spec” designation (nobody here knows if that means insufficient numbers or insufficient activity) for my newest CAR-T cells. I’m not the first Mayo Carvytki recipient to have this issue. Avoiding that hit is itself alone perhaps a good reason to choose a bispecific antibody over CAR-T, so, again, the Mayo’s CAR-T expert seemed pretty happy to recommend the switch now that they’ve finally ramped up the Tecvayli protocol for several weeks now.

On Day 1, March 27th, I will receive a tiny SQ dose. The Mayo experience already has been that daily outpatient monitoring is sufficient to detect the expected mild Cytokine Release Syndrome or neurologic toxicity, most of which can be treated from the clinic. My relatively small tumor burden and low lymphocyte count (thanks a lot Cytoxan back in September) might well predict milder toxicity anyway. If all goes well on Day 4 I’ll get a small dose with further monitoring. The first full dose comes on Day 8, repeated every week after, with the option of dose adjustment if there are any problems (unlikely after day 15), something that is harder to do with CAR-T. We should see some response by the second month. The great concern from then on would be infections, but I won’t really be much more immunosuppressed than I’ve been since 2019.

Again, because we’re still targeting BCMA the chance of success is probably only about 50/50, but if we just buy a few months of response there are other bispecifics in the pipeline targeting other antigens on the myeloma plasma cell, with FDA approval possible by summer, even if I lack sufficient renal function to get into research protocols. I am again cautiously optimistic, which was an attitude difficult to maintain the last several months.

Day Who Knows?

I had a feeling about this. The company says my engineered T-cells are “out of spec.” The Mayo coordinator of course was given no clue what that means, but it’s clear I will not be getting them re-infused as scheduled on March 23rd. Next week we’ll meet with the Scottsdale Mayo CAR-T specialist who we hope will have learned more. Whether it’s worth taking a chance on these or we’re better off switching to teclistamab may be more clear by then. Maybe Nancy will get to visit Havasupai Falls in April after all; I doubt teclistamab will have as stringent or lengthy a 24/7 babysitter requirement.

Day Minus 37

It’s looking like this is real. I had an uneventful pheresis yesterday and the cells are off to Ohio for training. Reinfusion is scheduled for March 23rd.

The ski trip had to be cut very short to get back in time for the pheresis, but Nancy managed to work miracles getting the storage spaces organized in just one day. I was very disappointed in how easily I fatigued on the slopes and didn’t even try to ski the second day. Then yesterday my Hgb was found to be only 7.9, so I guess I shouldn’t have expected much.

Day Minus ~ 40

Somebody wasn’t able to use his Mayo slot for the REMS Abecma protocol this month, and I got it! Abecma is the original BluebirdBio bb2121 CAR-T I tried to get years ago. Reported results haven’t been quite as good as the Carvytki that I actually got, but are pretty comparable to what is being seen with most of the bispecifics, so I’m delighted. The murine component of this CAR is perhaps different enough from the murine/llama one I got that there’s plenty of hope the ninjas will survive and multiply enough to give as good a response as I could expect from any other BCMA-directed therapy. The way things are going in the world of myeloma therapy, we probably don’t even need a year more before something novel comes along when this one fails.

Ok, so the ski trip gets cut short. I am NOT complaining.

Day Who Knows

I really, really expected to have more to report by now. It’s been so long that an update is due even if nothing much has changed.

Radiation therapy hit my gut pretty hard. Fortunately, I have a GI fellow daughter to point out that one feature of small bowel enteritis can be acquired lactose intolerance. After the first several weeks it became clear that was a major component of my trouble and Lactaid turns out to taste pretty good. Another major cluster of symptoms got a lot better when I dumped Cytoxan from my regimen. CT yesterday showed only a little fat streaking where the tumors used to be, and the left kidney looks like a kidney again (instead of an indistinct blob of whatever). Creatinine stable at 2.0, tumor markers quite low, Hgb hanging right around 10 with the option of Aranesp if/when it drops further. Last week we changed my baseline antiemetic from lorazepam to olanzapine and even if I’m still kinda stupid I’m back to eating actual food again. Doing so well, in fact, that we’re contemplating a ski trip middle of February.

Marginal renal function excludes me from most research protocols, so at this point we continue on moderately tolerable 3-drug therapy as a holding action while we wait for the Mayo bureaucracy to figure out how to administer teclistamab. This was approved by the FDA back in October for compassionate use, but the protocol is a bit complex and the Mayo is taking more than the projected couple of months to figure out how to get all the order sets entered in their software and how to get paid. Moderately tolerable is not a sustainable life, but is acceptable for at least a few more months for what I estimate is a 50-50 shot at otherwise drug-free (a la CAR-T) status expected from a bispecific.

Bottom line — no news is no news.

Day ??? +4

Nothing like dexamethasone for late night meditations. I found myself reflecting on a friend’s inspiring metaphor of my myeloma course as a race between advancing disease and emerging new therapies, and couldn’t help but think of myself as Xeno’s tortoise with Death Achilles chasing me. If I can just live myself inside smaller and smaller slices of time, he’ll never catch me. Roman Catholicism teaches that God and Heaven exist outside of time, so maybe that’s my secret approach to eternity. Those of you not in my reference frame will just have to deal with something more linear.

That does mean, as he said, trying to extract all I can out of each infinitesimal. The girls are coming here for Thanksgiving after all, because my new chemo (three-drug, pretty tolerable) schedule hits on every Friday and weekend travel might not be so good. Christmas was already decided for here due to Chris’ schedule. Good thing we haven’t sold the house yet.

It was 31 days ago that the motherboard in my main machine gave up the ghost. As of yesterday I finally have everything back together again. No data loss (recovery just difficult enough to force some improvements in my backup regimen), fortunately had a quite functional laptop to bridge the gap, but my what a pita it has been troubleshooting the Z690 chipset. It took three weeks just to get a POST, and who knows how long it will take for AMI to get out a BIOS flash that will recognize attached disks when RAID is enabled (kinda defeats the purpose, no?). Sure is nice to be back with a couple of big screens, and my good keyboard and trackball, though.

So, life goes on…

Day ???

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.


Well, gee, I sure have neglected this journal. Here we are more than 20 months out from the CAR-T and there’s still no evidence of disease. That includes a Minimal Residual Disease test that supposed to detect one bad cell out of millions.

I don’t expect to be posting anything for a while again.

Day 38

Bone marrow biopsy on 10/31 can find no plasma cells, is otherwise mostly normal. I presume the next step will be evaluation for Minimal Residual Disease, i.e. using the most sensitive methods available to try and find any evidence of remaining myeloma. We were aware this was a good possibility several months down the road, but not so soon.

Now I just need to develop some immunity to everything else. This is happening a little slower than we hoped but not really outside of expectations.