Hi Judy2 and Buzzm1,
Judy2, Thanks for the info. Isn't it cool we can communicate thru the web all over the world and don't have to be in the dark like a few generations ago.
Judy2 I wrote down the Healthwell and needymeds. I did call Novartis a couple of year ago and asked them what the guidelines were, if my insurance were to run out, they said "what so you can fit yourself into the guideline." Kind of a cold answer don't you think? So I was wondering Judy2 what kind of application did you have to fill out, did it want like tax return and assets and all? My husband is retired from chrysler and has a good pension and all, but with the cost of these meds, my last shipment of Gleevec was over $5,400.oo (which my insurance paid.) Of course everyone knows Chrysler filed bankruptcy and the insurance for the auto companies is ran or held in trust by the UAW, Blue Cross of Michigan. Since my husband is retired we pay a more in insurance then those that are not retired and our Dental and vision are cobra. I do not know what kind of assurance we have in the stablitity of our insurance, as it goes up every year and we seem to develop more health problems as we get older. Our insurance does not pay for office visit. But next year 2012, with a $25.00 co-pay, insurance will pay, 1 wellness visit to the primary doctor with 4 follow up visit, but yep they upped our deductibles several hundred dollars and our cobra. My insurance is paying my oncologist which I usually see about ever 3 months but it is a pain in the butt, they always have to file in twice, but I think the issue is more with the doctor billing problems. Of course after filing insurance for 6 years you would think Blue Cross would know the issue, but anything to drag it out. It has to do with the coding as to a follow up to chemo, which is V67.2. Some doctors don't like to use it they just use a visit code. Anyhow it gets kind of complicated.
Judy2 I am curious why you switch to Tasigna as I was told by the LLS that Gleevec patent is set to expire in 2015 still a few years away but much sooner then the other drugs? When it becomes generic it will be much cheaper. I hate to worry about relying on whether or not I will have insurance and to have to beg with millions of calls and letters. I can remember when diagnosed and not feeling with the new meds and all, and going back and forth to doctors, labs, hospital. Spending almost daily, hours on the phone with stacks of doctors (etc) billing and the insurance, etc. I can remember being so sick and vomiting all night and the next day, on the phone breaking down in sobs, trying to resolve billing and insurance problems, it seemed endless. No one on the insurance or billing end even seemed to care I had cancer and was sick, it was a zoo!! I would hate to change medicine and go through the new side effects and deal with all the bills and insurance issues again. If only my insurance knew my doctor want to switch me to a newer patent and it is even more expensive then the Gleevec, they would be happy to pay for the Gleevec.
I have been reading on the discussion board that some of the patients that have switched to Tasigna and Spyrcel are having serious side effects even going to the hospital or ER and some going back to Gleevec only to experience new side effects. One can't even get ahold of her doctor he spends most of his time on vacation, doesn't sound like their is a back up system there. My doc said it would be a piece of cake to switch drugs, easy for her to say. When I went to a doctor (2nd opinion) at the #1 leading cancer center of Indiana he said the chemical are different for each drug. We have guideline but that is for the whole population and every one is an individual and reacts differently to the dosage and chemicals. So yep my doctor has no way in this world to know how these drugs would effect each person. He also said some of his patients decide to go off their med's for a year then later about a year when their number go up they go back on medicine. I guess some patients even take a holiday vacation, to recoup. I remember how frustrating it was when I went on Gleevec and sometimes they act like it is all in your head. I wouldn't want to go thru that again, unless of course it was for a donor transplant and I had a chance for a cure, with a reasonable risk. I do have a younger brother who is a donor match his health is very bad, don't look for him to be around much longer. The older I get the more risk of death, if I do a transplant. I just thought with time they would come up with a better transplant and a lower death rate. I guess not, just promises. I have a friend who has CLL for about 15 years, she also had breast cancer, i have often wondered if it was from her chemo, because I know a lot of medicine for cancer causes other cancer. Anyhow she said she calls MD ANDERSON HOUSTON TX every year and asked them some questions and says OK where is the promise cure you promised me 15 years ago!! I went to a seminar a few year ago by one of the leading cancer doctors at a well know cancer hospital and he said in the old days we were taught to hit them fast and hard with drugs, chemo, and they died of the chemo before they did the cancer. So what is the right ratio of drugs mg, and good cbc and quality of life, after all you still have millions of cancer cells even with the med's. otherwise you would be dead.
Judy2 Yes I do believe part of the funding problem is CML is because it is a rare cancer. Therefore as with other rare disease there is a shortage of funding. I get these email from LLS that the federal funding has been slashed. Probably the donations and other resources are down too. I just wonder, of the billions of dollars for CML and finding a cure, if all that money went to the right places, or in the hands of the greedy!! Everything is political these days and who rules the world but the rich and powerful and politicians, probably lump the lawyers in there to, most of the lawyer are politicians. Dirty politics playing with our drug money. Why are these drugs cheaper in other countries, but it is illegal to get them out of the country. Not a very good playing field for the middle class and those with health issues. Yep are health care is in a mess.
As Buzz said everyone ends up paying for it. Most employers don't want to hire full time because they can't afford the high cost of insurance. That reminds me Medco said what do you care your not paying for it. I said all of us pay for it one way or another and I may not have insurance tomorrow and I am trying to be proactive and line up all my ducks in a row. Maybe they just like to keep us worried. Everyone surely know that when you retire, most senior insurance go up and up and up. Finally many of the seniors lose all they have due to health issue. I have old school mate all over the country who have worked hard and are devastated by their illness and the cost, losing their savings and homes. Our health care is in a mess, and those that have profited off of it have gotten richer. My husband worked 38 years and I worked 32 years here and there and they act like it is an entitlement that you have to beg for!!
Buzzm2, thanks for your comments on the cost.
I have some many friends on facebook with children and grand children with devastated desease, one with a grandchild with MD waiting for the cure for her sweet little boy.
We all pray for each other and support each other!!
I was content to stay on Gleevec until my doctor starting pushing me to change drugs. Not I am siked up, or whatever!!! Why go thru all this again just for my life to be consumed of cancer and its treatment. But if I am going to have to deal with her I might well bone up on what is going on out there and keep up with the board and go to a few seminars and probably change doctors to someone who will at least listen and give you a choice an is at least an expert in the field.
Stupid, dumb, cancer, where do all these diseases come from? Could it be; x-rays, radiation, chemicals, immunization shots, (autism) in the med's we take like cholesterol and such, our food, water, air that we breath. I have always been one to take care of myself. My brother-in-law who has been a health freak all of his life came down with child's osteo sarcoma and they had to cut off his knee and take two tumors off his lungs.
I sometimes wonder more and more about holistic medicine perhaps the ancient days were better educated then we are. Don't we have rain forrest with herbs and stuff for cures. Maybe modern medicine isn't the answer I don't know, just thinking out loud. Not only for myself but for the next generations to come.
If the doctor wants to stir up the bees nest, well she certainly has, so I will dig until I get some answers, maybe not what I want to hear, but then I will make a decision, and live with it, be done with at least that is the way I feel today, may change down the road who knows.
I pray for all of us, It is the good LORD to direct us, it is HE that is in control. After all are not going to live for ever, so I will make the best of what is left, and just keep singing praises to the LORD!! I pray that we will all be guided with wisdom and peace and compassion for each other, That doctors and the health care will be reminded of their oath and that we are human being and not and experiment or money in their pockets for their boats and house and vacations. Is it possible that doctors have lost their compassion?? Maybe I have gotten a bit sinile after taking care of my mom for three year, my husband who almost died because the doctor wouldn't take him off medicine he was allergic to and kept piling up more medicine. Maybe we as a society are over drugged? Maybe it is partly our fault that we want an instant cure for ever little head achne so they just get out their little prescirption pad. When I go to the doctor for my routine visits I don't ever like to complain, just tell her I am great. She says how your energy level well I just spent 88 days in the hospital with my son on life support so I expect it will be down.
Actually I think there are good doctors and nurses who care, but I think some of them ought to retire or get out of the business as they give the health care providers a bad image!! Yep I think that sums it up. Just venting and thinking out loud. Wonder if my blood pressure is up yet.
I pray for a cure for this stupid cancer!
