I have been on Gleevec since 2005, my PCR WAS NEGATIVE until last year, and then it went up and down a little on the high side. It is very important to me, that after doing some research, it was not that anything had changed in me, but the new way the Lab Company was doing it's calculation. My labs were being shipped to another state, from IN to New Jersey, and they had changed over to the IS, plus there were some mistakes made, in that my PCR was very high maybe PCR at 48% then a week later dropped to 12 %, plus there were some other factors. Funny all those years my FISH stayed a stable 1 % to maybe a 3 or 4 %.
Actually I called LLS to make sure I knew how to read the lab reports. I switched to a new onc, and he mentioned he had another new patient, complaining of the same thing, and his labs were shipped from In to somewhere in Ga, I don't really remember. I believe there were also people on this board complaining last year about their PCR labs, had went up, when really nothing had changed for them, it was the labs changing the way they calculated or the scale. Kind of funny, my old onc and everyone saying how great everything was for me, until the labs changed and then the big push to change over to a new patent TKI. I believe the drug companies put a big push on oncologist to change people like me, over to a new patent because Gleevec will expire in 2015. It was a bit of a shock to be smooth sailing then all of a sudden everything changed. I truly, truly, do NOT believe that I had any mutation, that the bcr/abl, or anything in me or my response had changed, only the labs. Then I get a letter from Novartis that they will not give out co-pay assistance to anyone on Gleevec but increased the co-pay assistance to patients on Tasigna. Now to me that says it ALL!! It has more to do with big PHARMA!!
However I must use caution here in that while I believe that is true for me that is not true for everyone. Also for those who say their white cells go up when off TKI, as a warning to me. I never had very high white cell count ever. Mine CML is slow, chronic and stable. So there is certainly a bit of caution here, in comparing one person's situation to another, as there are a lot of factors. It is a very individual choice as to each persons preference. At my age and not have any dependents I'm looking for a quality of life with low side effects and as close to normal CBC and kidney and liver function as I can get. For me to change TKI's, unless there truly is an emergence would just be ridicules for I'm looking for. I wouldn't even want to go on an eventure to explore a new TKI, except when or if it becomes an emergency. There are insurance and financial things to consider. My insurance pay very poorly and it is like a part time job to get them to pay, I will be 65 years old come Jan and I will have Medicare and my secondary. Do I want to bankrupt my husband or I, (in less it is an emergency,) I think not. Just think of all the financial stress that would add on to the disease and the mental stress, to me and my husband. Do I want my life to be consumed with cancer, doctors, hospitals, labs, test, I don't think so. Now someone else there whole life may be different, age, children, job, etc.
I also think it makes a difference in age as to the potency of the drug dose. I am in my sixties and I don't think I do as well with a higher dose or the side effects. We took care of my elderly mother for 3 years and senior are suppose to take child doses. I think the medical professional has a big push from drug companies to over dose and put people on to many medicines. When I took my mom to my own primary care doctor to cut out some of her med's and lower dose, the doc said no one know how all those chemicals work together. In fact last year my new cardio doc said the same thing. A couple of years ago my husband was put on an arthritis pill, then the dose double, then added pain, killer, neurotic, predisone. His labs were a wreck and I had to bath, fed and dress him. Took him to multiple doctors and I decided to wean him off the med's got the doc to send him to Physcial Therapy and now he takes very little of anything and for over a years has worked 34 to 39 hours a week. The doctors are way to swift to over medicate. Perhaps we are wanting instant cures, when maybe some things we can live. For example TKI are far from a cure, will I live any better or longer on a CCyR or an MMR. How much is medical theory and how much is really factual, proven. Are there studies on lower doses vs higher doses, I doubt it??
I have since switched over to a new specialist that is attached to a hospital that has their own labs for FISH and PCR, my first labs their were in Mar and FISH 1.5 & PCR 7 %. I had another lab last week but have not got the results. Also in March the onc run test for mutations and there were none, a big fat ?0-. I don't agree with the statement that if you are not at MMR you will have mutations, I think there are a lot of other things that factor in to mutations.
I guess I am a little bit different then most, I am very happy to be at a CCyR with my FISH and I think to much is made out of the PCR as I believe there are a lot of variable and more room for errors, etc.
I would rather have my CBC, kidneys and liver, etc. close to normal, with little side effects, and a better quality of life then to worry about a MMR or PCRU. When I put all the this on a set of scale made for me; the quality of life, & side effects, outweighs a MMR of flat ?0-. Besides do your really live longer with a MMR or can you live as long with a CCyR and maybe a low value on the FISH or CCYR, what is the magic number. Down the road they may even come up with a more sensitive test, but are you a better. The only cure is a transplant. Maybe they should work on perfecting the transplant so it wouldn't be as dangers, instead of life time drugs, especially for the very young. Also I consider the fact that even if I were at PCR 0, I could still have million + BCR/ABL floating around. So what does that tell me. Quality of life, and few side effect outweigh MMR. If you can get to an MMR with low dosage at few side effects I'm all for that. Not many Onc want to do that, until they have started you out on a high dose and crash land. Perhaps if there were more clinical trials on starting on a medium dose and soft landing we could avoid some of the suffering and perhaps life time consequences. Who knows different strokes for different folks. I just keep thinking I don't think there are enough trials for low dosage.