Call Me Lucky,
I couldn't have said it better. I have been on Gleevec since 2006. My previous Onc had been on my back, for the last year about the newer - greater (much more expensive, longer patent) TKI's.
Her words, "quit G for two weeks, do an EKG, switch to Tasigna, and it will be a piece of cake." Like to see her try it and tell me what a piece of cake it was! This led to a bit of heavy discussion back and forth, that I was not going to win. The onc main reason was a better newer better drug. (newer does not necessarily mean better!!! We are guinea pigs the way it is, hate to say, but I think most would agree) My FISH WAS 96 PERCENT NORMAL, CBC'S ARE ALWAYS GOOD! However the last couple of PCR were strange, with an upward trend, then a week later another PCR, that drop back down to zero and 12 percent. I called the lab (by blood labs are sent from Indiana to New Jersey.) said they had changed to the International scale, yep that explains the problem, no different on the CML just the interpretation of the lab. The onc kept saying these PCR lab have a lot of room for error and yet she was insisting change, change, change, based on what she kept saying she, "didn't think the PCR was reliable, magnified over and over, lots of room for error" those were her words. I would say CBC good, Fish Good I am not switching, but everyweek the office would call and that onc wanted to review the same thing, change, getting no where, except STRESSED. I refused to go back to her and that was last October 2011.
I went for a second opinion Nov 2011. The new onc said he did not necessarily go by guidelines, you know the one size fits all. He also said some patients go off for aTKI for a year and usually elect to go back on some TKI. I think perhaps they chose to go off so they can recoup from the toxicity of the drugs and feel normal.
Also the previous onc said there was no where close by to send my labs to run the PCR. However my new onc is 15 miles away and they do all their labs there, as they are attached to the hospital, etc. What the previous onc should have siad there are no labs close by that she has rights or is contracted to.
Yes my insurance gives me grief every year about whether or not they will approve the Gleevec and how rocky the world economy is. Our insurance deductible, etc go up ever year. Gleevec will become Generic much sooner then the others. Why would I change.
I am so glad the pressure from my previous onc, of change to Tasigna, sent me to this site, change as she said "a piece of cake" how does she know that, perhaps she would like to down a few TKI's. Besides the new oncologist is a group of leukemia specialist. She is a stand along onc that has way to many patients for one doctor, I would not be surprised if I was her only CML patient.
I think the drug companies put a lot of pressure especially on those that have insurance to switch to the newer drugs. For those without insurance the drug company may be picking up the tab. But we all pay somewhere. I raises the rest of everyone insurance rates up, so if it not's necessary why suffer thru the perhaps the demons of another drug, which could be better but could be worst. Why at age 64 but myself thru all of that, unless as a last resort. So maybe a doctor gets some kind of feather in their cap or perhaps some perks. I would wager then MONEY PLAY A HUGE FACTOR!!
I don't need a new outfit to make me feel better.
Anyhow my hold up now of returning to the new oncologist is the billing issues. The first bill was turned down by my insurance the oncologist billing refiled and corrected the codes, The insurance kicked it out as a duplicate. I happened to call the insurance and ask the hold up, she said yep kicked out as duplicate I asked her to checked the codes, yep codes is correct she will send it back to be reproccessed which blue cross has another 30 days. Meanwhile, I take my Gleevec everyday. I am doing well, except I get a little tried depending on how much I am stressed, etc. I do have chronic pain, which is not leaving me regardless of what drug I'm on. So I will just wait on the insurance to take its sweet time in paying the bill. Then once it goes thru and I make it to my next appointment I am to remind the nurse to use the primary code of ____ so maybe if it is done right the first time it will not take me 3 months to get it paid. However I have been playing the insurance game for 6 1/2 years so why would it change now.
Staying on Gleevec. PamSouth