Lovebuch family happenings

As of yesterday, we now have a plan. I am officially on the CAR-t trial. I needed some disease to get on the trial, and the bone marrow from Friday was 1.5% leukemia cells, so I’m in. And it should stay that way unless I get some gnarly, consistent GVHD between now and CAR-t cell infusion (you can’t be on the trial with GVHD because it’s too risky for further inflammation and side-effects. And thankfully my leukemic load was lower than the 10% of 3 weeks prior, so my disease burden is less now, and the leukemia is at bay. Yesterday I met with the attending doctor on immunotherapy, Dr. Shadman. I like Dr. Shadman, and we both remembered each other from my induction therapy at UW for the first go around, 6 years ago. He was a fellow then, on the ward rotation, and performed my first lumbar puncture and also did a couple bone marrows. He’s competent, direct, and has a decent bed-side manner. I’m fortunate it was him because he was a fellow under Dr. Shustov, so they have good c

No hospital this week. Plan was discarded because I got onto the CAR-T trial early, so CAR-t team are seeing me next week. Therefore, we went with a little chemo (Vincristine) yesterday to try to keep the leukemia at bay, but not remove it all. I find out Friday through a bone marrow if the plan worked, and the Vincristine reduced, but didn't eliminate the leukemia cells. If there is still any amount of leukemia found, I can be accepted to the trial and resume the Car-t plan. I will write more about that after I meet with them. We had a nice stay in Portland. Alpen was not afraid of fireworks, which was good cause there were many. He was fun, and cheery, and walking around a bunch. I unfortunately came down with a bad cold and spent most of the time  coughing and sneezing and drowzy from meds. It was really nice to have help from grandparents in this kind of state and Peggy and Byrne stepped up to the plate to help us out. Peggy even got up early one morning to watch alpen

Oh the Journey of Leukemia and Me. Unfortunately, a new chapter began this week.  I found out today that I have some leukemic cells in my marrow,  How likely was this to happen? Around 40% actually, so I'm not terribly surprised, but it does suck. Pre-transplant, two doctors told me the allogenic transplant success rate into continued remission was 62% for ALL- leukemia.  So my odds were probably around there, and I was hoping I was one of those in the 60%,  and I did everything I could to get in there (like the full total-body radiation with the extra cranial-spinal radiation). But alas, I wasn't able to draw the right cards again, so I'm back with leukemia floating around my blood stream. I remember reading a line in the transplant booklet that stuck with me: something like "t ransplant gives patients the hope of a cure." Two weeks ago, Dr .Shustov suggested a flow cytometry test on my peripheral blood just as a non-invasive way to check for presence of abn