I think sometimes we let CML become our whole life, instead of living.
I was diagnosed in 2005 and have been on Gleevec every sense.
My world got turned upside down last fall when my onc gave me a big push to change to Tasigna. Yep it was like reliving that first year of being diagnosed.
My prev onc, says, Newer, Better, drugs. That is plain crazy in my way of thinking, not enough data, they all have their demons, and who knows how one medication work on for each individual.
My PCR had went up last year, but when I called the lab they had changed over to the IS scale. In fact there were others on the board, where their PCR took a leap up, same problem, the labs had changed. Interesting I also got a letter from Novartis they weren't giving out any more co-pay assistance for Gleevec, only Tasigna. I talked with my primary and she knows well, how the drug industry works. Newer isn't always better. My Prim Doc says she likes to wait until new drugs are on the market awhile, also some drug makers are always trying to push drugs to the newer patents. None of the drugs are a cure. CML is only controlled. Even if you were undetectable you would still have a million plus leukemia cells. What about your lab counts and quality of life.
Long story, short, I have been CCYR for almost 7 years and doing well, until I started freaking out about my labs that were mailed out of state and supposedly took a sudden hike. My PCR were suppose to be undetectable for about 5 years, but the new onc said that couldn't be because my FISH were positive. I do have all the labs for PCR, FISH, etc. and yep that is what they say. Anyhow the new onc did a test to see if I have any other mutations and no I did not. So no one really knows why the GenPath lab of N.J. came up with PCRU, in fact Gen Path would rerun the PCR and they couldn't figure why I had a PCRU with a positive FISH. Neither can the new lab and new onc.
Anyhow I saw my primary today. I said it has been almost 7 years since diagnoses and as long as I am CCyR, and my other counts are close to normal and I still have a quality of life, outside of some old age (64 years old) I am one happy camper. I said otherwise my life becomes about cancer, doctors, side effects, labs, and then what is the point. Nope (only speaking for myself) I am happy to be in a controlled ranged. After speaking with my primary today I am perfectly happy where I am! Beside I get tired of feeling like an experiment. We are not guideline statistics we are individual that need our med's specialized for just the individual. I not so sure it is such a good ideal to keep comparing ourselves to each other, because if we don't match, we are upset thinking we are not doing well.
To bad they don't do studies with low dosages and CCyR stability. Controlling CML with a quality of life until a cure comes about. I read one post where they think if you can have a deep response you might kill the ancient stem cell that causes the whole mess. However I am along the line of thinking it is much more complicated then that. Would the bone marrow produce another defective stem cell, I think so, and why. I don't think these drugs are even close to the cure. But until the cure, I am happy with CCyR and a reasonable quality of life at 64 years. If my new onc decides to change our original plan, my primary and I have a back up plan.