I had an appointment yesterday with my doctor and I've asked him some open/specific questions this time,
my previous appointments with him were more concentrated on some other issues I had at the very beginning (like blood work and things like that),
plus he had some extra time yesterday(usually he runs out of the room so fast, they are always in some kind of a hurry).
My question: How long do I have to take the Tasigna? His answer: Forever, this medicine does not cure the CML it only controls it.
My question: If and when I reach PCRU and if I maintain it for at least three years, can I then consider of stopping the treatment?
His answer: There is no much data/evidence when stopping the treatment that the disease wont come back, so I do not recommend it.
I have a patient now who just did that and he relapsed. But it will come back, I know it will.
My question: Can I then ever consider to at least lower my dosage?( currently I'm taking 600mg)His answer: No, until there is sufficient data/evidence that
My question: How long can I live with the CML? His answer:I really don't know,certainly 20 years is not enough for you since you are still young,
we really don't know, we can only hope that your normal life span wont be shortened by the CML. Just don't know. Keep in mind that only a decade ago
patient who were dx with the CML had about only three years to live.
The feeling I got from my doctor yesterday is that he really does not know what the future holds,
and I can't beleive it that this is my life we are talking about, only 4 months ago I was perfectly healthy, it's just so hard.