Renal Cell Carcinoma (Kidney Cancer) Support Group

Hi Annb,
my name is Beccanne, and my fiance has been on Torisel for advanced stage MRCC, for 8 months now, he is doing very well and he has gotton some shrinkage, but his lungs have stabilized for a little over 6 months now and for us that is the best news....I beleive that Torisel is the better of all the drugs they have out there now and i truly beleive that it will help your husband... My fiance was d/x last Aug and started Torisel in Januarary this year, i have researched all the drugs for this disease, all tho Torisel, they say is the last option drug, i thought he should try it first....It's side effects are less with the worst was a rash for him and it took time getting the drug adjusted, and finally they put him on a streoid to help with his rash, which took it right away.... Tim now uses it only when needed which is a half of a 4 mg pill for 2 days when needed, i wish you both the best of luck with Torisel, i feel if anything that Torisel will work better for your husband than any of the others...
Beleive me, when i say it's was the best choice we made, best of luck to you, i will keep you in my thoughts & prayers and if you like, keep me updated on his progress...
God bless the 2 of you, this is a very hard disease, just to let you know, my fiance is still working and feels good while taking Torisel...
Beccanne

I am Dan Steinkamp 65 years old). Marilyn's husband..
Torisel is a success.....I have received 55, 250 mg IV's since June of 2008 and I am doing great. I lost a kidney with a 2 1/2 lb tumor attached in March of 2006. The cancer cells waited almost a year before they metastasized to my lungs which was in March of 2007. I spent six months on Nexivar and then Sutent for six months, it kept the cancer from spreading til June of 2008, when the cancer spread to my hip socket. I had 15 radiation treatments and then I was put on Torisel on a weekly basis. My major side affects include skin rash, fatigue,and signs of :Chemo Brain".. Torisel has had the least side effects on me. Keeping hydrated is so important and the hardest thing for me do to. I do some weeks go in to the Cancer Center to be hydrated, an additional liter of fluid to help me thru the weekend.
I, my family, and medical teams will Continue the fight. I also was diagnosed with Parkinson's disease in 1996.

Thanks Dan for the information it has helped alot. I am in the process of trying to research as much as I can regarding the torisel. I am so glad that you have had success with it, and I am hoping that my husband will too. thankyou once again my thoughts will be of you lol Anne

Hi Annb,

My husband was also on Torisel for MRCC for about 9 months which recently ended. What we've learned over the years is that some of the drugs work better for one patient than another. My husband had even longer results with Nexavar (over a year and a half the 1st time he took it when it still was a clinical trial). He just started taking Nexavar again after 2 years of other medicines....and we just got news that it is working again. It is encouraging to know that we can circle back through what is becomming a collection of treatment options. Good Luck!

LSMS

My father was on Torisel and the side effects were:

-fatigue
-gum sores
-blotchy skin that looks like acne?

Thats about it. But most of all , stay positive! :)

Hi Annyb,
I was on Sutent for 4 rounds and it finally put me in the hospital. My next opportunity was Torisel. I have been on Torisel for 16 Months.........YEA!!!!!!!!!!!!!! I did go in once a week for a while and now I am going in twice a week. The metastisis in lymph nodes behind my sternum have been stable since taking the Torisel. I was diagnosed with bone metastisis in my Sacrum a few weeks a go and just went through 7 days of radiation treatment. The pain is all but gone so the radiation must be working. The Torisel has had few side effects on me. Like Beccanne's fiance i get a rash at times and get very fatigued. Good luck to you and please send me notes from time to time. Love, ronnie1

Thanks Ronnie and all your kind words we start on Friday with the torisel, so fingers crossed will keep you updated. lol annyb