Hello everyone,
I would like to open a discussion about stopping the TKIs outside of clinical trials.
I am amazed and worried at the number of entries about CML patients wanting to stop their medication. I think that we should be very cautious about this. So far, the patients only stopped the medication in trials with pcr every month and immediate access to the drug if/when they lost MMR (0.1% IS). So, what do we learn about the “stop the drug” trials?
1) It is pretty much a 50/50 chance of success. Which means that one patient out of two will have to go back on the drug as soon as possible. We need to remember that CML is a deadly disease if left untreated.
2) A better strategy might be to halve the dose, which would decrease the side effects and the financial burden. The results of a small trial (Destiny) show that for patients stable in MR4 (0.01% IS), the percentage of relapse is 2%. But the trial lasted only a year and nobody knows what will happen after that.
We have a lot of people who participated in the Destiny trial on this forum.What does everybody thinks? Am I being overly worried?