June 16, 2010 at 10:38 pm #39160marionsModerator
Thanks so much Kris and Kathy. Rick is in the process of posting all clinical trials for easy access to our members.
Would you be so kind and post this information under the clinical trial section on our discussion board?
It is so nice to see your name rather than mine however, if you prefer I gladly will do it.
Thanks a bunch,
MarionJune 16, 2010 at 10:17 pm #39159kathybMember
That’s a great find! A clinical trial and a state that requires your insurance company to pay. The link to all the states is here: http://www.cancer.gov/clinicaltrials/ctlaws-home
Iowa is not listed as mandating coverage, but the bill to mandate coverage in Iowa was passed in Jan 10.
KathyJune 16, 2010 at 7:42 pm #39158
I remember something about insurance companies funding clinical trials and I did a little research. Michigan law on this can be found here
I think perhaps this trial might fit that category if you are interested and you can get on it
Hope that helps.
KrisJune 16, 2010 at 3:12 am #39157mlepp0416Participant
Tom has been on the pill form of Xeloda and has had no side effects….no hair loss and he tolerated it very well….5 pills in the am and 5 pills in the pm. So far it has worked well for him. The nice thing is that he didn’t have to travel to take chemo. Each prescription was about $1,500 so it’s substantially less than the drug your doctor was thinking about.
As far as insurance companies go, they will deny any drug that is considered ‘experimental’ and from the sounds of it, there simply is not enough data with this drug and that may be why the insurance is denying it…most likely they are denying it as ‘experimental’.
As I do in my daily job as a customer service rep for a large health insurance company, you ALWAYS have the right to appeal any decision. But if they are denying it as expermental, an appeal will not be approved UNTIL the drug has been approved by the FDA, etc…
Whatever the choice, I’m keeping my fingers crossed for you and sending loads of prayers your way.
Go with God and KEEP KICKIN’ THAT cancer.
MargaretJune 16, 2010 at 12:28 am #39156ashleyParticipant
Can you call the drug company yourself?? I would think that could be even more effective AND I can’t see why they would not offer to put you on it. I’ve mentioned on earlier posts that this happened with a drug call Davanat.. I called the drug maker in Massachusetts and the CEO returned my call and on his message said he would work with my mother’s doctor to get her the drug if the doctor agreed. I have a good feeling that the drug company will come through for you.
Good thoughts coming your way…
AshleyJune 15, 2010 at 10:11 pm #39155cherbourgParticipant
Hang in there. It may also help if your Doctor writes a letter. My Mom’s oncologist did that when he put her on Xeloda. The drug company was also helpful. She was approved very quickly.
Keep using all avenues of help….the squeaky wheel does get the grease!
Sending hugs and prayers to you and your family!
PamJune 15, 2010 at 8:20 pm #39154
Yeah, I had problems on xeloda. EXTREME gastric distress resulting in bad dehydration which required several week long hospital stays and then the adding of high dose liquid potassium to the drug mix and weekly infusions to keep my fluids up. Hand and foot problems too. But it kept things pretty stable.
Hope that helps.
KrisJune 15, 2010 at 8:07 pm #39153linda-zParticipant
The ideas expressed here all sound good. I hope you try all of them, and at least one works.
As far as Xeloda…..I have been on it and I know many others have mentioned it. I for one, have not had too many troubles with it at all. I believe it was Kris (devoncat) that said she had a hard time with it and had to discontinue or reduce its use.
I took it with Oxalyplatin IV which made it hard to distinguish which side-effects were from what drug, but I believe the Oxal. was worse. I took 2 Xeloda pills, 2X’s a day. The biggest side-effect I had was a softening of bowel movements. I was always told I should watch out for too much diarrhea, but the Oxal. was constipating and the combination of that and Xeloda kept the problems at a minimum. The other thing was what they call hand and foot syndrome. You need to really moisturize your hands and feet OFTEN to keep them from drying out, turning red and cracking and peeling. I never had that problem. It was very tolerable.
I wish you well in the use of Xeloda (if they decide on that for you), and/or the new med. if it can get approved either as a clinical trial for CC treatment or for one of the other reasons mentioned here.
Good luck and don’t give up. Keep pushing that ins. company and/or the medical staff to work for you.
Linda Z.June 15, 2010 at 6:21 pm #39152
Wishing you success with whatever treatment you get. Lets hope the social worker pulls through for you.
KrisJune 15, 2010 at 6:15 pm #39151gavinModerator
Sorry to hear about your troubles with the insurance company. I hope that you manage to get somewhere with the appeal or from the links that Marion has provided. Good luck with this.
GavinJune 15, 2010 at 5:42 pm #39150marionsModerator
Rick…I suppose that the social worker is trying to have you qualified under the compassionate use program. The restrictions will be influenced by your income. It has to be below $75 thousand.
This drug has been approved for kidney cancer: http://www.cancer.gov/clinicaltrials/results/everolimus-kidney0708
Your treatment with this drug would be considered “off label.” It is being tested for other cancers also:
Thinking of you and sending all my best wishes your way,
MarionJune 15, 2010 at 3:49 pm #3914932coupeParticipant
It may sound crazy but…do you think it would help if the drug company received a flood of letters from the CC forum requesting financial aid for you to try their drug? Afterall, they too could benefit significantly from your trial. Particularly if it is shown to be effective after others haven’t been. I’m sure many here would love to write a letter on your behalf. Just a thought…
May God restore your hope and give you peace.
bobJune 15, 2010 at 3:37 pm #39148darlaParticipant
I hope you can get some help getting this treatment paid for. It is all so unfair. You pay for insurance and when you really need it they won’t pay!
Having to deal with the disease is stressful enough without adding the stress of fightiing with the insurance companies. Wishing you lots of luck.
DarlaJune 15, 2010 at 3:28 pm #39147kathybMember
I’ve been told they have social workers at Mayo who work on insurance approvals. Is it possible for you to contact Mayo and have them appeal the denial? It seems to me Mayo would have more information on this drug and could more aggressively appeal that decision.
I was first denied by my insurance to go to Mayo (out of network), but an appeal worked.
KathyJune 15, 2010 at 2:32 pm #3666rick-kampMember
Well, I got the official word back today that after a week of consideration, my insurance company has denied the preauthorization for use of everolimus as my chemo treatment. My chemo nurse told me that I could pay out of pocket for it if I wanted to as it’s only $7000 per month. Haha! So, now I’m working with the cancer center’s social worker to see if the drug company will provide it at a low cost to me since it is relatively new for treatment of CCA and they need some more data to get insurance companies to cover it, anyways. We’ll see how that works out, but I’m not holding my breath.
The backup choice is Xeloda which they are working on geting the authorization for now, in case the other route for everolimus does not come through. I was really excited to try everolimus because my Dr. at Mayo said it was by far his top pick for me, but if it doesn’t work out I hope that Xeolda will be effective. I’ll read up on some of the side effects of that because it looks like that is the route things will probably go. I hope it is effective for me because of the recent tumor growth and failure of the other chemo drugs.
Wish me luck – either in getting everolimus through the drug company or in trying Xeloda.
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