Two steps backwards and one step forward

November 21, 2023

This is not the update I wanted to give everyone today. I wanted to tell you how great the hotel was going to be! How glad I am to finish the week of pheresis treatments! How truly thankful I was to be able to get such great care and treatment. Yesterday we postponed (I prefer postponed rather than cancelled) the bone marrow transplant because there were too many circulating leukemia cells in my blood to go forward. I got my port taken out, we cancelled the hotel reservations, and went back home to Virginia. Patted the dog and changed the thanksgiving plans.

Backing up a bit, we did get the go-ahead for the BMT from the transplant doctor and signed all the consent forms; my bone marrow biopsy showed low enough levels of leukemia to go forward. I got my “garden hose” catheter port installed, and started the apheresis treatments to remove the antibodies to my donor’s blood. (Because my donor is my son, and he spent some time hanging out in my body, I produced some antibodies to him which need to be removed. About 30% of women need this treatment if they get a donation from their child.) The apheresis treatments basically run all of my blood through a machine that removes my plasma and replaces it with some Albumin solution. Super cool. I’ve been pretty tired as a result of the treatments, but they are over relatively quickly.

I’ve also been receiving some immunoglobulin therapy to help my immune system now, and I started some anti-rejection drugs. The anti-rejection drugs didn’t go so well with my stomach, but I stashed ritz crackers around the house as needed.

I expected to start the pre-transplant chemo tomorrow. All those appointments are cancelled.

At the end of last week there were some odd cells circulating in my blood. We were all concerned, but they could have been immature white blood cells or a misread on the lab test. We got the results Monday that they were leukemia cells, and at a concentration that would prove the bone marrow transplant unsuccessful. I need to be in a good remission for at least 4 months for my new immune system to recover and be able to fight them back. With the levels this high, it wouldn’t sustain the remission, and I would have a failed transplant.

One good thing about this is if we had gone to the transplant quicker, or if I hadn't needed the apheresis we wouldn’t have noticed these cells. The transplant wouldn’t have worked, and we wouldn’t necessary know why.

The doctors at Hopkins recommended I go forward with a chemo treatment plan that is familiar – injections for 5 days in a row along with some pill chemo. It’s familiar, but a little different from what I’ve done before, and they’ve had some good success with that specific combination. They also have a pretty promising clinical trial with CAR-T Cells. In that treatment, they take my blood, “grow” some stuff on my blood, and then put it back in me. The hope is that my new cells would attack the leukemia cells and destroy them on their own - immunotherapy. In that case I likely wouldn’t need a transplant. (John had already signed up for them to do that with his cells, which would be given to me post-transplant as an adjunct.) It is working very well for ALL, another form of leukemia, not as well for the AML I have.

We met with a doctor at my practice here that suggested some clinical trials in addition to the familiar treatment. We’ll meet with my regular oncology doc tomorrow. Treatment should start Monday (or whenever we can start the clinical trial if we go that route) and would be here in Virginia, presumably out-patient. We would likely do a couple of rounds of treatment (each round is one month), and then reassess how things were working. We could go to the transplant then, or do another round, or do another approach. It’s nice to have options.

Needless to say, it’s been an anxiety producing few days. I’m sad about not moving forward. It was nice to have a schedule and set some expectations however briefly. However, I'm focusing on my excellent medical team, and the options I have.

Enjoy your turkey (or tofurky, no judgement here), mashed potatoes, nap and later the leftovers sandwich.