I just completed 8 months of no TKI (Sprycel) and received my PCR result for September. For the second time I had a spike in my PCR. This time to 0.05% I.S. scale. Although half a log below MMR, I thought this may be it and I am not able to hold MMR for much longer without Sprycel or some other TKI. I was preparing to re-start my low dose Sprycel and give up the cessation effort.
I had hoped that over time, I was either going to lose remission fast and have a clear answer to my test - or I would prevail and slowly see my PCR numbers fall back to PCRU and that would be that.
Instead, I am in a no man's land where my PCR's have slowly crept up (lost PCRU), but then fall back again - all within the margin of error of the test below MMR. Still - I thought, might as well re-start Sprycel. At least I won't have to park at M.D. Anderson every month - I can go back to 3 months. So I suggested to my Oncologist I'll need a new prescription.
And then a surprise - my Oncologist told me to continue like I am doing since I am below MMR and have had many months like this. "risk (to me) is negligible and if PCR pops above MMR then we'll re-start (and then try again). But after 8 months, you have a shot". The thinking is that the LSC's may burn out (Trey's theory that I happen to agree with). They want to see if this can happen with no therapy present, but with monthly PCR monitoring. He told me he has seen this many times now in cessation work. It can take years and 8 months is not enough. Most of these patients were forced to stop for other reasons and they observed they were able to continue off therapy and so they did with results similar to mine. I am an outlier only in that I deliberately stopped therapy.
Just when I was getting ready to throw in the towel - my doctor tells me I can keep going - He said I could re-start if my anxiety was high (he should know better on that one) and felt the need to re-start, but otherwise, he's good with what I have been doing. I am not kidding myself - if this doesn't work - then I'm back on Sprycel. Each month has been a gift.
I know I have been a cheerleader of sorts and some felt I was a professor at "Cancer Cure University". I have posted here and shared thoughts on what I have been reading and learning. But I also read about the anxiety and pain others are feeling especially those who are not getting the kind of response that so many others achieve. I willingly stopped treatment to explore alternatives. I am sensitive to that. If enough forum readers want me to stop posting because my approach is not clinically tested, validated and approved - I will stop posting. I won't say my approach is easy on the mind - it was for me because I fear the TKI more than the disease. But that's just me. My reading now is focused on Leukemic stem cells and I will try anything (natural) to go after them. Staying in this "no man's land" is not definitive enough.
However, on to month nine.
Thank you to all who have encouraged and supported my efforts. And to Trey, I have enjoyed our debates.
Disclaimer: I do not recommend, encourage or suggest to others to do what I have been doing without consultation and agreement from your doctor. CML is a serious disease and not to be taken lightly - ever.