I received some good news this week. The first full bone marrow biopsy results have finally come back following the CAR-T infusion, and it’s Minimum Residual Disease (MRD) negative. It doesn’t mean I’m cured but it supposedly makes it less likely that I’ll relapse any time soon. The CAR-T seems to have done its job.

I’m still at risk from graft vs host disease from the transplant, and I’m still at risk from complications from the CAR-T. CAR-T can’t distinguish between cancerous b-cells and good b-cells, and b-cells control the immune system.

The CAR-T team are also continuing me on oral chemo for a year as a belt and braces approach.

As since the beginning of this nightmare, my general health and susceptibility to infection is largely dependant upon my blood levels. The chemo knocks them down so I have to have twice weekly G-CFS injections (administered by my wife at home who seems to quite enjoy stabbing me) to boost the levels back up. It’s the Neutrophil and Platelet levels that are constantly up and down. If the Neutrophils are below 1.0 or the Platelets are below 50 I have to be really careful.

Despite all that I’m taking this week as a win and for the first time in a while I’ve actually started to feel pretty good. I’ve started a rehabilitation program at our local leisure centre and many of my ongoing symptoms have subsided. I still have neuropathy in my feet so I think my running days are over, but there’s plenty of other stuff I can do. This week I also had the PICC line taken out of my arm so I’ll be able to go swimming again in a few days, so that’s something.

8 weeks post-CAR-T (which is soon), I’ll be able to drive again. I won’t lie, I’m a little nervous about that. I’ve only driven once since I was first diagnosed in July last year.

My hair has grown back nicely. Not only do I now have dark hair (previously grey), but it also seems thicker than before. Maybe taking on the stem cells of a younger man has de-aged me. I feel like Benjamin Button! The oral chemo is only a low maintenance dose for now so hopefully my hair stays like this.

I’m trying not to get too excited about the recovery. After all, it was 5 months after the stem cell transplant that I relapsed.

I can take solace that the medical community seems to be genuinely excited about the CAR-T results they are seeing. I’m actually the first Acute Lymphoblastic Leukaemia (ALL) patient to have CAR-T at Sheffield Hallamshire hospital. It’s that new that they’re still trying to work out which team will monitor me long time, given I have had both a stem cell transplant and CAR-T.

For anyone interested, in early clinical trials CAR-T also seems to be having results for other conditions. I read on Kottke more than 40 people have undergone a CAR-T-cell therapy for lupus, most of whom have gone into drug-free remission.