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Are there any chromophobe RCC that have taken Torisel out there? Or any other chromophobe out there at all?

wufmew's picture
wufmew
Posts: 5
Joined: Jan 2012

I have recurrent chromophobe RCC on my liver and in my bones. I was wondering if there was anyone else on this site who has chromophobe and has taken Torisel. I just finished Sutent (two months) and it did not work for me sadly. I am hoping the Torisel works and buys me some more time.

Texas_wedge's picture
Texas_wedge
Posts: 2807
Joined: Nov 2011

wufmew, how are your pets?

As a teacher you'll probably be happy to delve into the archives here. When you're at the list of Kidney Cancer threads (where this thread is listed) there's a search field towards the top right of the page. If you enter "chromophobe" you'll discover many threads with references to this cell type and several devoted to it where members like BG have contributed quite a lot of info. Entering "Torisel" will also elicit quite a few messages to explore.

I hope this helps you to get a start. Try also the sub-types article in the late great Steve Dunn's site, you'll find it at:

http://cancerguide.org/rcc_subtypes.html

I hope the Torisel works well for you. There are many more possible avenues to explore than there were just a few years ago and many patients with a good attitude are living longer and better than used to be the case.

For what it's worth, I am, or rather was, chromophobe but alas it's now mostly turned sarcomatoid. I'm at Stage 4 and Grade 4 but then I'm twice your age and had a 9cm T4 tumour. Your situation could be worse and it sounds as if you're a fighter who has a lot to live for and a capacity for making the best of things.

wufmew's picture
wufmew
Posts: 5
Joined: Jan 2012

Thank you for the help, and I wish you well!

I have an old cat with an adrenal tumor who is a fighter,
and she wouldn't allow a dog so no dog, although I always had a dog growing up.

LISAinTN's picture
LISAinTN
Posts: 143
Joined: Aug 2011

Hi wufmew,

I'm sorry, but I don't know anything about chromophobe RCC, but I just wanted to say that I'm glad you found us. (Although I'm sorry you needed to.)

There are a lot of great people here and it is a good place to ask questions, get advice and make friends. Looks like TX was able to give you some info. Anyway, I just wanted to say hi.

Blessings,
Lisa

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