Hi everyone
This is just an update from my previous thread in which I wrote about developing low blood counts on imatinib after a long time on the drug.
Right now, I've been off imatinib for exactly a month and am not taking anything for CML. I feel significantly better in terms of mental energy and it's great not to have the side effects of bone and muscle pain. The only lasting effect is that I have quite a sore shoulder joint, which the doctor says could be a symptom of TKI withdrawal. To boost my low blood cells, I've been on neupogen (which stimulates white blood cell production) and Eprex (which stimulates red blood cell production). I was also in isolation to protect myself from infection while the white cells were low.
The neupogen has worked and my white blood cells are back up to 6.53 (normal range is between 4 and 10). This means I've been able to stop the neupogen. The doctor also says that this is a good sign as it shows that my bone marrow is still able to produce white blood cells as it should. Interestingly, I was worried that the neupogen could also stimulate the production of leukaemic cells if it stimulates white cells, but my doctor assured me that this doesn't happen and that it has been thoroughly tested. Nevertheless, I'm pleased to be off it.
The red blood cells are taking quite a lot longer to recover and my haemoglobin has stayed at 8 (normal for a male is 13-16). I'm still out of breath when climbing the stairs. Platelets have also been sluggish but there has been an increase from 67 to 97. The doctor says that it usually takes a lot longer for the red and platelets to stabilise.
My latest BCR-Abl test has gone "up" from undetectable on 18 August to 0.003% on 12 September. To me this is almost the same result and still well within MR4.5. I was expecting it to increase faster now that I'm not taking any TKIs, so I'm pretty happy that there has been a minimal change that (as far as I know) is within the range of error of the test.
The strategy now is to keep on with the weekly red cell stimulating injections and to do monthly BCR-Abl tests. Hopefully, by the time the BCR-Abl has risen out of MMR, which I pretty much expect will happen now I'm off the drugs, the red cells will have recovered sufficiently to be able to restart some medication or other. Which one I will restart is unclear for now, with full dose nilotinib, low dose imatinib, low dose dasatinib and possibly full dose asciminib all on the table. My doctor favours asciminib because she says it works differently and she is concerned that all the other TKIs are likely to reduce my blood counts again.
So that's where I am at the moment - once again, thank you so much to everyone who responded to me with so much kindness, support and advice in my hour of need. I am so very grateful for this forum and the wonderful people on it.
Martin
