Nexavar (sorafenib) is in clinical trials for GIST at present. It has already been approved to treat kidney cancer (renal cell carcinoma). Some GIST patients have been prescribed Nexavar "off-label" in the situation when the patients cannot enter a Nexavar clinical trial.
Bayer says that its FINANCIAL ASSISTANCE PROGRAM program for Nexavar (called the REACH program) does apply to any patient for whom is is prescribed, even for off-label use.
There is help from Bayer if you have QUESTIONS about Nexavar. It's called NexConnect. It's a 24 hour 7 day a week hotline staffed by oncology nurses. The number is 1-866-Nexavar ( 1 866-639-2827).
The NCCN Soft Tissue Sarcoma Guidelines version 2.2009 include sorafenib as a "generally accepted systemic therapy" for GIST (see page 35 of the 69-page pdf of the guidelines document, which is available after a free regisration at http://www.nccn.org ). The inclusion of sorafenib (Nexavar) in the NCCN guidelines may help patients obtain insurance coverage for off-label use.
For more information about this drug, see the Clinical Trial Drugs section page Sorafenib (Nexavar) and the GIST Support International website page.
I had problems with my feet when I was on Nexavar. Things were bad when I was on my feet for long lengths of time and then I end up off my feet for 2-3 days. What helps a little is wearing gel pads in your shoes and thick socks. With summer here, thick socks don't sound ideal, but they do help.
Nexavar hotline? The program is called REACH. There are two nurses who answer the phone lines and take questions and give good support and advice regarding Nexavar. The nurse I spoke with was so kind and spent probably an hour with me.
The number is 1-87-REACH-4-IT (1-877-322-4448) The phone line is available Monday through Friday 9 am to 8 pm EST.
The company will also provide a small backpack with lotion and cream to use for your feet. Perhaps you may have already received one when you were prescribed Nexavar.
Yes, the nurses at Nex-Connect are very caring and helpful.