Sunsa61,
I appreciate & value your comments very much!!! It is good to know of someone that has been on Gleevec longer then me (especially during the trials) and doing well!!
Yes I have read some post of people who went off of Gleevec on to Tasingna/Sprycel and it was not a pretty outcome, then had to go back on Gleevec with new issues.
I think If I were going to switch i would rather go on Sprycel made by Bristol Myers. My family has history of heart problems and Tasigna has heart issues. Not only my old onc pushing the newer drugs and finding reasons to take people off of Gleevec, but been reading post that many of the leading research hospital doctors are doing the same things and telling patients, no longer using Gleevec, just read a post today about that. That is where they get their money from these expensive drugs, no CURE!! How long has the world waited for the PROMISED CURE for those with HIV and other diseases. I think Novartis sucks taking people off their co-pays, which will probably force patients onto the newer patent Tagsigna. I am still waiting along with many others to hear about when the promised CURE is coming. With all these billions of dollars of research money I sometimes I wonder if all the money really goes into research or the CEO and the Feds. Our country pays more for these drugs then any other country. I recently called Medco to ask about the cost of Tasigna which is considerable more then Gleevec and she said what do you care you have insurance. I said we all pay one way or another, as our health care including Medicare is out of control, especially for those of us who are retired or have catastrophic illness. Our cobra and out of pocket went up considerable for this year, because of the world economy and cost of health care and these drugs. We received a statement from our insurance trust, the present is bleak and the future shaky dependent upon the world economy, sort of like the domino effect. Funny my old Oncologist said if you lose your insurance I will see you get the drug Tasigna. She does not have a crystal ball, she does not know what the economy or future holds, nobody knows, except God. That is ridiculous that I would change drugs dependent upon her to get them. I have no desire to go into uncharted territory for me unless absolutely necessary, I guess the drug company has there way of convincing one if necessary. Gleevec will become a generic 2015 a few years away, but much sooner then the other drugs.
Yes I got the notice from Novartis too, no longer helping with co-pays. So far I am lucky that this year my insurance is paying all put $20.00 for each 30 day shipment. I used to pay $50.00 for a 90 day shipment but my insurance won't do 90 day shipment anymore. So far I am SO........ VERY VERY THANKFUL I do not have to bet the doctor or drug companies for the Gleeve !! Early this year I had called the UAW TRUST who actually holds the insurance trust money and has our contract with Blue Cross of UAW Retiree and they said if something happened to me they didn't want stuck with paying for a 90 day supply, therefore I could only get a 30 day supply plus ever december my doctor has to call them to tell them I still need the Gleevec even though she writes the prescription. Then I get a phone call from the insurance trust that It pay for Gleevec was granted for another year, subject to change. God only know what the insurance were to say to go to another drug that would cost a $1000.00 or more a month then Gleevec. I don't even know if they would approve it, they I would have to be filling out paper to Novartis to go on Tasigna or Bristol Myers to go on Sprycel and then there is no guarantee. On some of these phone conference you hear of people who can not get the money for these drugs or have to pay out there nose.
I did change oncologist but I have spent hours on the phone to our insurance and to the Oncologist billing trying to get the right code so at least my insurance will pay for the onc visits. At present my insurance does not pay office visit except to the onc with the right code. The code my insurance will except is not allowed or used by most other insurance, so I had to do an appeal and make a few waves to get ever body on board before I made the switch. When I was first diagnosed It just wore me down to much, to struggle with the insurance and billing. I have learned a lot since then. I could tell you some horror stories dealing with all that, but I suspect most people on here all ready have their own stories. I was healthy all my life until this came up. I worked 32 years and took good care of myself. There were a couple of times in between jobs and I worked part time and I did not have insurance, I was lucky back then i was in good health.
Sometimes I still wonder what causes the stem cells to go bad? I have heard so many different theories. Infant live vaccines, chemicals, virus, radiation, to many x-rays, chemical and quality of food, water contamination, air we breath???
I hope Novartis stand by what they told you "they would always make sure to supply your Gleevec" I am anxious to hear back from you!!
Sorry for venting. I don't talk much about it to family and friends, because it would bore them, they wouldn't understand it and they think it is a piece of cake, Until... Yep, until they or one of their family members are struck with a devastating, costly illness, then all of a sudden, you hear them... Then I think to myself different story now, it has hit home, yes.
Oh, Thanks for telling about deleting my inbox, didn't think about that.
Merry Christmas, Love and Blessing in Christ, He will get us thru this, whether on this side of Heaven or the other, it is win - win, for me. I will be 64 New Years, and my children are grown, so don't have to worry about who is going to raise or care for them, like some of the younger folks.
Pam
