Well, friends, it’s time for a new adventure in bleeding-edge medical therapy. The next summary paragraph may have little new information for many of you, but for the sake of others and to settle my thoughts it’s good to review the story:
We figured out fairly early in 2013 (if not sooner) that the stem cell transplant was a mistake, not only failing to help much but probably doing irreparable damage to my bone marrow. “It seemed like a good idea at the time,” and given what we knew then was probably the exact right thing to do. Ah, well, retrospect is a b*tch. Over the next several years I cycled through every FDA-approved therapy, some before they were actually approved and some that never were, with the exception of a couple known to have such limited effectiveness and horrible side effects that they were worse than dying (actually did try one that met both those criteria for three weeks). Late last year things began spinning out of control so badly that our only real option was to get onto a CAR-T or equivalent research protocol that would offer a reasonable shot at a year or two of drug-free complete remission. Since then has been a roller coaster of hope and despair as I went up and down the wait lists at Mayo and UCSD, always just close enough on the horizon to make us reject going further afield, often learning in the last weeks that some administrative problem had blown up the opportunity for an indefinite delay. A couple of weeks ago we finally learned the Mayo’s Janssen Phase 2 site visit had gone better than initially reported and those two weeks were even more of a roller coaster, but now it’s really begun. This Monday I had my apheresis – collection of T-Cells that have been sent to Jansen where they will engineered into trained ninja assassins against B-cells (the precursors to myeloma plasma cells). More on that later as we move into new territory.
To get a good collection I needed to be off essentially all therapy for periods of time (I only understand a little of why so don’t ask). That meant more weeks of watching the myeloma, kidney, and liver numbers climb to new, scary records, and now enough anemia (no longer responding to EPO, or at least not rising – who knows how more quickly it would drop without), extramedulary disease, new bone lesions on PET, and diffuse retroperitoneal and mediastinal adenopathy, to make for plenty of new anxiety for Nancy and me; we’re somehow managing it better than expected.
The new CAR-T cells won’t be ready until September 30th, and now they’re gone off to the lab we’re hammering the conventional chemotherapy again to try to bridge the 5-week gap. We’re using drugs that, though they had begun to fail last year, were a pretty tolerable regimen, but doubling the doses (actually the same dose of Kyprolis but twice a week instead of once). Today’s treatment was no big deal, so there is ground for hope that tomorrow and subsequent weeks should be pretty manageable. If it just slows the progress that’s a win; actual improvement of course would not be a disappointment.
So what happens with the reinfusion? Well, for the three days before I will undergo lymphodepletion with Cytoxan/fludabarine, two old cancer chemotherapy drugs that can be expected to immunosuppress me a bit, maybe cause some GI symptoms, but nothing like the fatal dose of Melphalan I was given before the stem cell rescue. I ought to at least keep my hair. The big deal is that when the ninjas go to work killing the tumor there will almost certainly be some degree of Cytokine Release Syndrome – not to be confused with the more common Can’t Remember Sh*t though that is one manifestation. This is a generalized inflammatory response of variable severity. Nearly all of the eight patients in the Phase 1 study had a least some, one was so severe as to die of sepsis after three months in the ICU. Scary, but with room for 7/8 optimism as well. Bottom line is that it can appear suddenly, unpredictably, and pretty severely, usually in the first week so I’ll be in the hospital at least that long, but I’ll also need a 24/7 chaperone for the first four weeks. The kids have pulled non-overlapping schedules together wonderfully well, are already booking their flights to come and give Nancy frequent respite. It’s impressive how this whole thing has tightened the family. Not that I recommend it, but…
Soo… It’s time to revive the blog. Rather than send out messages tailored to each of your varied expertise I will upchuck a great load of detail that means something to some of you and may give the rest some flavor about my progress. I’ll make sure the family has access to add updates if I’m not capable.
You may also have noticed I’m back on dexamethasone today. I took some pretty heavy sedation tonight so have some hope I’ll eventually be able to get this stuff out of my mind and get some sleep. I’m growing hopeful it will be soon.
Meanwhile thank you deeply for all the love and support over the last months and years, sometimes from surprising and wonderful directions. I greatly appreciate the many prayers being offered (though I’ll confess I’m more of a “thy will be done” fatalist when it comes to personal interventions – could be wrong about that, though). Those who just express concern are maybe just as helpful to our psychology, sometimes giving me motivation that has otherwise flagged. Again, THANK YOU.
Love,
Tim
