December 1, 2015 at 2:36 am #86305
Great added information, Thanks much, Matt.
MarionNovember 30, 2015 at 10:12 pm #86304mattreidyParticipant
Just for those searching the forum, I’ll add that I was able to get my oncologist to prescribe Keytruda for me starting in November 2015. It’s still not FDA approved for Cholangiocarcinoma so my insurance (Aetna) would not pay for it. I was, however, able to get Merck to give me the drug for free under their Patient Assistance Program (http://www.merckhelps.com/). I have the MLH1 gene mutation in my tumor and after just two infusions, my CA 19-9 is down 171% so it appears to be working for me.January 20, 2015 at 3:09 am #86303
Correct, it can be prescribed off-label. However; we really don’t know the efficacy for CC as of yet,. CCA patients are still in clinical trials. If the tumor expresses a gene mutation called BRAF V600, then perhaps it is possible for the physician to request this drug.
MarionJanuary 20, 2015 at 1:08 am #86302middlesister1Moderator
Marion, I’ve been trying to understand the off label workings and I thought that since keytruda was FDA approved for melanoma in Sept, it would be possible to get off-label approval for CC (if a doctor backs it). Is it a difference of what they can do versus what in reality they will approve?
Duke, ONC said we might have hard time with xeloda approval but it went though without a problem.January 19, 2015 at 10:40 pm #86301
Duke…..Xeloda (capecitabine) is the nearly identical oral drug to the intravenous 5-fluorouracil and leucovorin. It is highly unlikely for your insurance company not to cover it. Keytruda is undergoing clinical trials, hence it is not available – not even off-label.. Nexavar ((Sorafenib) might need off-label special approval.
It helps to work with an insurance navigator (most often a nurse) who will take on your case and work it through the internal insurance system. You might want to check with you carrier. As mentioned by the others, your physician will have to fill out the necessary paperwork and submit to the insurance company.
MarionJanuary 19, 2015 at 10:19 pm #86300dukenukemMember
What I’ve found is that these were available only as part of a clinical trial. Dr. Roberts said it would be possible to intervene. I’m asking if anyone has been able to get it prescribed without special intervention. Not sure why he is confident but local onc says it is not possible for her. Dr. Javle from MDA is the one who suggested xeloda.
Plus, in the new world of Obamacare, it looks like he is out of network now.
She said she is doing for me exactly what she would do for a family member.
DukeJanuary 19, 2015 at 9:32 pm #86299sharonMember
Xeloda is the only chemo my husband has had. After a successful resection in March, he had Xeloda in conjunction with radiation, followed by Xeloda alone. When he was offered the Xeloda post radiation, the oncologist told us that there was no evidence that Xeloda would help, but they would offer. He did the chemo, and just got his post chemo scan results-at this time, there is no active cancer. January 26 will be the one year anniversary of his diagnosis–stage 4.January 19, 2015 at 6:39 pm #86298iowagirlMember
Duke…it sounds to me like your onc does not want to be bothered…to even try. Your onc should be going to bat for you and pleading your case, even if it seems impossible. Why not turn over all the stones and give it a shot? Is there anywhere else you can go…..even if you can’t swing Mayo. Come to think of it…why not contact Dr. Alberts and ask him this question? He ought to know if it has been done…getting one of those drugs approved and covered. If he says it’s possible, even with special circumstances, then you could present it back to your onc and see what she’ll do. If she says no….she apparently is just too “busy”. If Dr. Alberts says that it’s possible, you might try to get him to go to bat for you with insurance an drug companies….as being a Mayo doctor, and an expert in this field, they might take his application more seriously. Just an idea. I’d personally not waste anymore time with the local onc. But, if you do, I’d ask her if it were HER family member…her husband…her child….would she try anyway.
Julie T.January 19, 2015 at 5:15 pm #86297lainyParticipant
Cuz, did you try using our Search engine. I know I remember see those words on here but don’t remember what was said. Hey, what do you want? I am almost 10 years older than you! Best of luck in searching.January 19, 2015 at 4:08 pm #10878dukenukemMember
Other than in a trial, has anyone been able to get nexavar (sorafenib), or keytruda, or xeloda approved as a treatment and covered by insurance?
My onc says she can’t. I wonder why not since I think I’ve read that some of us had it approved. I wonder what the exact circumstances were.
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