For the first time, today I felt crummy. Not horribly bad, just run down. Operating at 80%.
But that’s a good sign. It’s a sign that the infusion is doing its work, running into T-cells in my blood stream and converting them into CAR-T cells that then go and kill the myeloma cancer cells. Sometimes when I shut my eyes it’s almost as if I can feel them, or sense them, doing their T-cell conversion work inside me. Of course I can’t really feel any of that, but thinking I can makes it more real.
Because I was feeling crummy, I checked on the results of all the various blood tests the hospital’s done over the past three days. As I expected, several of the markers for inflammation had risen rapidly since I got the infusion, which is expected and shows that the treatment is working. This afternoon, the nurse came in and took more blood for a Kappa light chain test, which is the marker used to show the actual level of myeloma cells in my body. That test takes longer to come back, but it will be interesting to see how much of a change there’s been just two days after getting the treatment.
As I’ve said before, the hope is that the inflammatory response caused by this new treatment (which convert T-cells to CAR-T cells over time) will be more attenuated than the response caused by traditional CAR-T treatments (where the modified T-cells are dumped into a patient all at once). If that’s the case, then my level of inflammation and crummy-feeling may never reach the higher levels, which can produce dangerous side effects. We’ll see.
Today I figured out how to cast media from my tablet to the big screen TV in my hospital room, so Suzie and I are satisfying our pre-Tour de France cycling race desires by watching the first stage of the Giro d’Italia, which is starting in Bulgaria, of all places.
Stay tuned for further information.

Categories: Blogging
Steve! Thanks for keeping us posted. I hear that visualizing is helpful in getting the most out of the journey we are on!
Feels funny to be glad you are only feeling 80%! But I’m glad and grateful for the updates. Sending huge hugs!