Afinitor

Has anyone had any experience or do you know of someone who is taking this new drug. I have read on the web, but would like to talk with someone who is taking the drug and compare notes with them. I am a patient..male...55 years old. I have been on the drug 9 days and I am having some side effects. Nothing I can't handle so far, but I did take Sutent and it took a while for all of the side affects to appear. The Afinitor is not taken like Sutent with the on off cycle. I am supposed to take it everyday.

One more thing, I am especially interested in finding someone who has Blue Cross/ Blue Shield of Oklahoma. They changed their pharmacy policy and if you do not read every little bit of mail close, you are not aware. I am getting claims denied because of the change and I can't change companies...so I am stuck. I call one day and am told one thing and the next day I call and it is completely different. I was talking about turning in a claim since the Afinitor is new and is regarded as a speciality drug. One told me to file a form and another person told me to just send in the receipt that came with the shipmnt. Oh yeah, you can only get it by shipment and have to file your own claim with BC?BS of OK...Being sick and then having to be responsible to make several calls and the worst thing is you are calling and the automated message keeps telling you..."Did you know many of your questions can be answered by visiting our web site." then you talk to a rep and they can't answer..Oh well...guess I needed to vent.

 

On 6/18/2009 guitarman wrote:

Has anyone had any experience or do you know of someone who is taking this new drug. I have read on the web, but would like to talk with someone who is taking the drug and compare notes with them. I am a patient..male...55 years old. I have been on the drug 9 days and I am having some side effects. Nothing I can't handle so far, but I did take Sutent and it took a while for all of the side affects to appear. The Afinitor is not taken like Sutent with the on off cycle. I am supposed to take it everyday.

One more thing, I am especially interested in finding someone who has Blue Cross/ Blue Shield of Oklahoma. They changed their pharmacy policy and if you do not read every little bit of mail close, you are not aware. I am getting claims denied because of the change and I can't change companies...so I am stuck. I call one day and am told one thing and the next day I call and it is completely different. I was talking about turning in a claim since the Afinitor is new and is regarded as a speciality drug. One told me to file a form and another person told me to just send in the receipt that came with the shipmnt. Oh yeah, you can only get it by shipment and have to file your own claim with BC?BS of OK...Being sick and then having to be responsible to make several calls and the worst thing is you are calling and the automated message keeps telling you..."Did you know many of your questions can be answered by visiting our web site." then you talk to a rep and they can't answer..Oh well...guess I needed to vent.

My husband started Afinitor last Sunday and has had no side effects so far. He was on Sutent for 26 months with a myriad of side effects that were manageable. He has the federal employees Blue Cross program with the Medco drug program.  Specialty drugs are handled by Accredo. We had no problem filling the Afinitor  prescription.  An 84 day prescription is over $17000  so you probably don't wnat to file a reimbursement claim. Does BCBS OK have a special cancer pharmacy?  Does BCBS OK have a special number to call for cancer drug questions? Have you tried calling the number on your sutent prescription bottle? We found the regular 800 numbers are useless for cancer issues so our suggestion is to utilize the specialty, cancer or managed care toll free numbers. Good luck.

Sharencec 

I dont know anyone who has taken the drug - its not even licenced here in UK but Europe are applying for a licence which should be granted in a couple of months - from what I have read it can have some pretty positive results so its worth sticking with it. Side effects are supposed to be minimal, much less than sutent. May I ask did you just get sutent then affinitor or was anything else offered? I am at the sutent not working stage now and need to fight my corner here in UK for options. Railwayman

I have been on Afinitor for nearly three weeks. The side effects are minimal so far. I did get a sore throat from some sinus drainage. I was gin a small dose of antibiotics and it did not knock the infection and I am on a stronger antibiotic now and hope it works. Sorry that you can't get Afinitor. I tried Sutent and it was horrible. I then went to Germany for some hyperthermia treatments that are not used here in the U.S.  It helped along with some chemo therapy..but all the progress was lost as the cancer got smarter than the treatments. I am praying fo the Afinitor to work. There are good things being sais about it, but it is so new. It did seem to work so well that it was released from trials very early. I will post after I get my next scan and we will see if it is helping. I think that hope and a good strong belief is very necessary for anyone fighting this fight. I pray that you recover and will return your mail if you write..Perry

sorry I can't help you with Blue Cross issues as I live overseas but my husband is now taking Afinitor after about 10 months on Sutent. He was on a low daily dose of the Sutent and now takes the Afinitor daily. The side effects did take a while to come on the the Sutent but with the Afintor he was on them for 2 weeks and had unbearable mouth ulcers and had to come off for 2 weeks before starting back. He's been back on for about 4 weeks and still had mouth sores, bad rashes but so far that's it. hope this helps and good luck