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Springtime, CML and 4-year TFR update

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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

Congrats Martin…. I think I have written that a few times regarding your situation. I especially like the explanation AI gave you about your numbers. Makes sense to me.
Keep up the good work.

Joe

I’m not sure of the science behind the “busy” summer immune system, but I love your doctor’s stadium analogy. I often try to bring people back to real numbers instead of percent figures to show that a doubling of numbers really isn’t always a a problem, but I think I’ll steal the stadium analogy going forward. It’s excellent!

As a counterpoint, my doctor says that summer BCR-Abl results can be higher due to temperatures that the blood gets stored at between the time of extraction and the time of testing. I also have no idea of the science behind that one!

Also, great news for you.

David.

Hi Joe and David

Thanks so much for all the support from afar! Both of you know my story and I can honestly say that you have both helped me a great deal when I was going through that tough time. I am so grateful for people like you.

David, I'm glad you liked that analogy! I also think it's brilliant and really puts things into perspective. I'm thrilled you're going to use it to encourage others - that was my intention when sharing it. That point you made about the temperature is also interesting. Here in South Africa, 24 September is a public holiday and 25 September was probably taken as a day off by many for a long weekend. This means that, although my test sample was taken on 25 September, it was only processed the following Monday. In fact, it's the first time I've been to the doctor when my result wasn't ready in time for my appointment. The doctor said that leaving the sample for the three day weekend could definitely have affected its quality and she is ordering a retest in November. This definitely isn't an exact science!

All the best to everyone!

Martin