Hi Diane, I was wondering how your treatment is going so far, I know it is early days for you, but I am constantly trying to see what's out there.
I have mentioned this to my team as I have 2 courses of my current Tax / Gem to do and then hopefully I will get a break, will then look at options and this could be one.
Do please keep us updated on your progress.
Hi, I am on Sutent but not on a trial as I did not qualify. I am not triple negative, but have used up most of my options. My cancer is mixed lobular/ductal and active in the bones and a few small spots in the liver.
I would very much like to be in touch with anyone who's on Sutent please.
What does it mean, hair goes yellow ?
Hi Diane and Jane,
don't know if you remember last year when I went to the NICE conference in Plymouth. I was adopted by a local charity for kidney cancer.
Some of the members were on sutent, one man had been able to return to his job in the police force, a lady was a teacher and back in work. Both looked incredibly fit and couldn't believe the change that the drug had made to their lives. Two other members had only been on it a few months but said their quality of life had the quality back in it.
Hope the tabs arrive soon...shame the criteria narrow...I wouldn't be eligible as I've had so many chemos.
I know you use the US sites...what are the results looking like there?
I actually don't know the name of the trial, however I do know that the pharmacutical company doing the trial is Pfieffer(spelling might be wrong).
There are 200 spaces worldwide and the Western General in Edinburgh were allocated 10 spaces. However there has only been 3 took them up on the trial, I think the main reason for this is the criteria.
You can only have been on one chemo since being diagnosed with secondaries and that you have to be triple negative - which as you know there aren't that many of us about in relation to other types of breast cancer. I have been waiting on the tablets since last Thursday and I must admit I am beginning to become a little bit impatient with it all!
I can't think of anyone who uses these forums who has been on sutent...have you tried the US sites?
Hope the drug goes well for you...stripey hair and all.
What's the name of the trial..as you probably know I am triple negative so interested.
I am on a trial at the moment for triple negative breast cancer, I have been on Xeloda up until now but my liver functions were increased the last time so me oncologist wants me to chang over to the aove drug. I just wondered if anybody else had had this drug and what side effects they had. I know that it will make me turn yellow and have stripey hair - the cicular way round though not up and down! I think I will look a bit like LA LA of the tellytubbies!
Any comments would be appreciated