Reaching Out Too

Hello.

I'm new here.  Age 64, advanced RCC.  Diagnosed 12/27/06.  Talc. chest/lung surgeries in Feb.  Started SUTENT 3/01/07.  50 mg. per day/ 28 days on/14 days off per cycle.  So far, the cancer (stage 4) in my chect/lungs and in my abnomen have been held in abeyance but not shrunk.  The side effects have been fairly normal, I guess.  The main problem is that some are a little too severe, but the biggest problem is that the fluid build up in my lungs is cancer driven.  As a result, the talc. lung chest surgeries were only partially successful and I've had to get catheders (sp?) put into both lung areas, which I (or my wife more accurately) drain on a consistent basis. 

I now also have fluid build up in my stomach cavity which is causing more problems (affecting breathing and food intake).  I live in rural USA and the oncology clinic I go to is not that up on the newer cancer treatments, not connected with trials, etc.  I live in PA so I've got access to some of the larger cities if need be. 

My doctors are well intended but not cutting edge in RCC, and there is talk of taking me off SUTENT to try something else that might shrink the tumors.  I'm reaching out here to see if anyone has any thoughts or ideas.

Thank you all for taking the time to read my letter

Jeff

I don't know how far away from NYC u r but, Sloan-Kettering is a top cancer hospital in the country.  There is also a drug called Nexavar that you can try, you just have to pay close attention to the side effects, they can get pretty bad.  Also if one is available in your area or nearby I think a Genitourinary Oncologist is the best way to go as they are specialists in the field, RCC as you know isn't your regular "run of the mill" cancer and regular oncologists do not have the information a GU oncologist would have.  I wish you the best in fighting your battle against RCC.

Good luck and best wishes,

Cindy

Hi Jeff.I say go to a Dr that specializes in RCC.There is a new drug out for kidney cancer called Torisel,my sister had previously been on Sutent it worked real well for her.She is 58,dx Feb 07,mets to liver and one lung.Did 4 cycles of Sutent until Torisel approved in July.Of course she had side effects similiar to yours and someothers.Anyways,please try to get to a well known hosp in your area.My sis goe to The Cancer Treatment Center of America in Oklahoma.I believe there is one in PA.They are WONDERFUL.Please check them out.Will be praying for you and yours.Hope some of this helps you.

God Bless

Susan