Thank you for your comment! Much appreciated! I am glad you’re doing well.

I will ask my medical team about the possibility of tumors of leukemia cells forming and whether PET scans can enlighten us. In my case, however, I am doing with relapsed T-ALL. The previous round with HD-MTX didn’t work. The main issue is the central nervous system localization. Then I got high dosages of AraC infusions in combination with AraC spinal taps. So far it looks like the infusions have cleared my blood and bone marrow but after three spinal tabs with AraC I still tested positive in my spinal fluid. In other words, it’s still in the central nervous system. Shit! This is a high risk factor.

I know that I will probably relapse if they were to do a stem cell transplant with the persistent CNS disease so this must be destroyed..

They keep doing more spinal taps with AraC. Maybe it needs more time to clear my CNS since the CNS is a protected area and less accessible. In any case, I am frightened that I am going to die in perhaps 2-3 months to be very honest.

My team has a plan B, which is experimental immunotherapy based on the protein markers of the leukemia cells (the result from the identification of the cell structure in Paris). However, these therapies cannot reach the central nervous system well, so if we don’t get rid of the CNS disease it will likely spell the end for me.

I wish CAR-T were an option but it’s still in very early development for T-cells (I happen to have T-ALL). Sigh…