I live in Greenwood Indiana and my previous onc would ship my blood vials to New Jersey, also. I have been on gleevec since 2005. Everybody was so happy with my FISH and PCR and all labs then last year all of a sudden labs PCR, were going up and up, then finally were at nearly 48% positive. Prev Onc had been pressuring me to switch to Tasigna, I did not want to because of grief with my insurance cutting back from 90 day supply to monthly shipment and sending me letters the last two Decembers that the our insurance was not doing well with the world economy. When I called the insurance they said the Gleevec was approved as of today, but could be changed any day any time. So I wanted to stay on Gleevec because it goes Generic in 2015, which would make it affordable should the insurance crutch or crises arise. As far as Novaritis co-pay assistance, when I filled out the papers we were only allowed about $100.00 to $200.00 a year or something like that I don't remember. Then I got a letter from Novartis no more co-pays assistance to anyone on Gleevec only Tasigna, thus the big push to Tasigna a newer patent drug.
Anyhow back to the lab in New Jersey I was so concerned that I took it upon myself to call the lab in New Jersey and they had changed over to the IS scale. Also my previous oncologist did another Fish and PCR only 1 week after the pcr came back I think it was 48%, well the next one, (blood take a week later) came back down to only 12% I truly believe that nothing had changed regarding my leukemia only the way the labs was reporting and I also believe they made a few errors along the way. Also the previous oncologist kept mentioning that the PCR are very unreliable in that they are magnified over and over and over. So why would anyone in their right mind, sorry, want to change drugs based on unreliable PCR that have quote oncologist much room for error!!
Anyhow I asked the previous onc if she could send me, to anywhere in Indiana, that I could personally go to, for my lab drawls and interpretation and she said no.
Well I came to find out that Indiana University Simon Cancer Center does their own labs and interpretation, turns out what she should have said was she had no contract or rights there, then again perhaps she didn't know I.U. did their own labs. I have only had 1 lab at I.U. which was last March and I will have another one this Thursday. So I am hoping to do 3 labs 3 months a part and get a base line with the new lab. My Labs Mar 19th 2012, were FISH 1.5 % positive and PCR 7 % positive. No other mutations were found, only the BCR/ABL, 9/22. Hoping my labs on Thursday will be better as I have been taking Curcumin. Hoping they will stay in this range or lower. My CBC are nice and a few just a little under normal. I know onc say you can have low counts and that is Ok. But in my gut I don't believe that. Like red blood cells carry oxygen to the organs, like the heart, and kidneys, etc. What about the liver that has filter all those med's. Who want to have platelet transfusion and all the other stuff that goes with low counts. The flip side of that would be what is the risk of having detectible FISH AND PCR. Well for me if I stay in a low range I am happy with that, because you can be PCRU and still have a million leukemia cells, so what is the big deal, to stay with the world guidelines, everyone is different. For me I am older in my sixties and can not take the high doses of med's and I don't like being sick or feeling yucky all the time, and what are the long term side effecs of these drugs. I am just saying why not a lower dose, and feel better and have more normal CBC counts.
I guess I am the odd man out regarding this point of view. I suppose other and perhaps the onc wonders why I don't get it. Sometimes I think it more about keeping on higher doses and new patents for the Big Pharma money, but that is only my opinion. Most people probably don't see it that way, so I guess maybe I am missing something. For me it is not the longevity of life but the quality of life, but them I am at the late season of my life. If I were a younger person and in good health and a good donor match, I would definitely go with the transplant because that is the only, chance of a cure. I guess most don't feel that way on this board. But I think there are some folks on floating around on this board from other countries, that think transplant is worth it. So maybe it is how we are programed by our doctors and the reports they put out and the country you live in. I would think they would be putting more research money in the cure which is a transplant. I think I read an article somewhere they were talking about doing more research to make transplant safer, with all the money from these drugs they should have something to keep them going in that direction. I mean the bone marrow is broken and who knows how skewered up it is. Isn't that what they do with heart and kidney that cna't be fixed, transplant. They can't fix it with these pills. Hate taking these pills!! Yep about 15 years younger i wouldn't be looking for a transplant doctor.
I noticed I have a similar posting on another thread. Sorry, I must have been tired and really venting. Really upset my present Onc only faxed in a script for gleevec for 1 month and only a 1 month refill.
Was hoping to go back to school this Sept but unless He keeps me where I am or I find another doc who will, I don't see starting school on a new drug. The drugs not you down a few notches. Gleevec was no picnic to start with, but we have certainly mellowed out, and I more then happy with a FISH at 1.5 % positive and close to normal CBC counts. Who says you live longer with lower BCR/ABL counts that are PCRU. It is only in theory. I think it is more about keeping every one on high dose for the Big Pharma, then living longer. Just my 2 cents.