Accessing Afinitor treatment

Hi, my mum was diagnosed as having kidney cancer in December 2008.  She had her kidney taken out in January 2009, and also her spleen following a complication.  She was then apparently going to be put forward for a clinical trial, but due to lots of time wasting and messing around missed the window and ended up not receiving any treatment until early May, by which time the cancer had spread further.  She was put onto Sutent, but only kept on it for two courses of treatment (8 weeks).  She has now been taken off an basically sent home to die.

I have been reading about Afinitor and want to try to access this for my mum.  This avenue wasn't even discussed by her consultant.  What can I do....Can I get her onto a clinical trial or even purchase the medication for her?

Please help

You need to see a differant provider and get another opinion. Change your doctor or clinic.

hi,

you could try calling Norvartis (the guys who make the drug) directly and as about the posability of being put on their compassionate use program (you will need to meet their specified criteria though).

i did and i'm getting the drugs free of charge.

give them a go they can only say Yes or No, (if they ask for you consultant to ring them on a mobile no. then it's a good sign as that's what they did with me.)

I agree with Dave57, get another opinion from a different Oncology group.It is extremely unusual for any ONC to give up after 2 months. In my case the first 3 cycles of Sutent were mostly concerned with what the correct dosage was, the idea is to give the highest dose you can tolerate in my case 37.5 MG. It was not until the 4 cycle that there was any visible reduction in the mets to my lungs. I have had 14 cycles of Sutent and I am almost “NVD !!!!”. This is not the first time I have been in “remission” my ONC dose not like the word he treats RCC as a chronic disease. I have been on IL-2, Interferon-A. A trial where they tried to produce a Vaccine from a tumor removed from my left Lung and Sutent. I will be switching to Afinitor this week not because the Sutent has stopped working but I have had some sever reactions to Sutent, Liver enzymes through the roof to close to where permanent Liver damage could occur and Platelets count went through the floor. My ONC decided that we should switch to Afinitor, beyond Afinitor the are several new drugs alone and in combination that have been approved or are about to be approved in the U.S. by the FDA. There is no reason to give up!

You need to be aloud and very squeaky wheel!!  

Tomv Southern Cal