Hi everyone
Just another update from me. For those who don't know my story, I was forced to stop TKIs altogether 4 years ago due to intolerable side effects and had to attempt TFR even though I never met any of the criteria.
The good news for me is that, 4 years down the line, my CML still appears well controlled without taking any medication. I am currently on 0.0052% on my latest BCR-Abl result. This is up from 0.003% six months ago. While I can't help being disappointed that it is rising, the doctor explained to me that I should picture a 100 000 seater stadium like the Maracana in Brazil. There used to be 3 people in the stadium and there are now 5 - from a helicopter, the stadium still looks empty. And the doctors look at the big picture.
In the four years off medication, I noticed that my August / September BCR-Abl tests always showed spikes and then returned to lower levels in January. I asked AI (yes, I know!) whether it thought there might be a reason for this. It gave quite a sensible conclusion - September is springtime in South Africa where I live, and the immune system is busy coping with all the pollen / allergens in the air, which means it "pays less attention" to the CML. I suffer quite a bit with allergies and it does seem to be a plausible explanation for this. Just throwing it out there - perhaps other people here also see a spike in their numbers during springtime?
Anyway, just wanted to share my good news and wish everyone all the best from Johannesburg.
Martin