Torisel

My mom finished her first dose of Torisel yesterday.  She was fine afterwards and even went home and cooked dinner.  This morning she was sick three times.  Not sure if it was the medication.  Anyone else on Torisel or know about about the success rate of it?  She's diabetic and also has heart problems.  The cancer is just on her kidney but they won't remove it.  The doctor keeps saying that it's pretty big, but he's never told us how big....even though we've asked a couple of times.  I've tried to get her to get a second opinion, but she trusts the doctors, even though they lost her records; and the doctor that removed her cancer the first time never even called her back to discuss that the cancer had come back, he just had his nurse call her and give her the oncologists number.  Didn't even tell her why she needed an oncologist.  He told her several months ago that the cancer cells had showed up in her urine, then they hadn't, then they had, then they hadn't.  Now she has a huge tumor on her kidney? 

Sorry, I was probably rambling, but I feel so frustrated with all of her doctors at the moment and I just needed to vent.   

 

DOCTORS NEED TO LEARN HOW TO TALK TO SOMEONE WHO HAS CANCER, i HAVE HAD TO SEE ABOUT 10 DIFFERENT DOCTORS IN 2.5 YRS, and the surgeon who removed my L kidney was the only one who I talked to, that left you with the feeling he had told you everything possable...Some were better then others, but you had to pry info out of the other ones...My oncol Doctors are the worst, and top notch doctors at that,they never say shit, and some act pissed when you grill them, which I reserve the right to do, after all its my life we  are trying to save. I also read absolutly everything that I can understand ,about treating RCC, I catch these guys all the time not knowing the latest treatments available for RCC, I belive I have lasted at least a year longer then I would have  otherwise (really),then if I just took there word about everything conserning  my treatments, were talking about x-rays ,cat scan,bone scans,radiation treatments, and all the new kinase inhibitors I would not have had, if I just let it be up to them what treatments I got,,,This is the US goverment (VA), we are talking about here...which I conside good because you are not tied to one doctor all the time, so you learn more, thats for sure...I am going to find out about my latest bone scan today befor I deside if I want to go throuth all those nasty side effects with torisil, just to live another few months (and a big maybe if it works at all) for me..This will be the 5th chemo drug I will have taken if I do go with it at all...Kind of a confusing letter don't you think, 2.5 years of treatments covers a lot of territorry that you will be going through yourself...I also have 5 different mets to deal with. All stage 4...and good luck my friend, with your treatments./...Mel from Nevada

My mother is currently in her third week of Torisel treatments.  The side effects haven't been bad so far.  Mother's tumor is about 9.7cm and is considered very large as well.  She also has mets to both lungs and the pelvic bone.  The doctors are not considering surgery for her due to all the mets.

However, if your mother doesn't have any other cancer locations I don't understand why they haven't spoken with you about surgical procedures before starting Torisel.  You also have a right to copies of all your pathology, radiology and blood work reports.  Ask for those next time you see the doctor.  Should you decide to get a second opinion (which I would recommend) they will want all those reports any way.

I too have RCC and was diagnosed with it in 1997.  My right kidney was removed and I was cancer free.  In 2005, the cancer returned in both lungs.  I have been on Nexavar, Sutent, Avastin, and even went through IL2 treatment, where you are hospitalized.  Everything has worked for me.  My tumors shrunk, however, the side effects have been horrible.  I am now on Torisel and have had few side effects.  My tumors have shrunk more in a shorter period of time than with any other medication I have taken.  I am in stage 4 and pray that I will live long enough for a cure.  If you were to look at me, you would not even know I am terminal.  I try to stay positive and look forward to the future.  I want to see my child grow up and live a loving life with my husband.  They have been very supportive and sensitive to my mental health.  I wish you well and stay positive.  Take care and God bless you, Debbie

DebbieGo  I too was dx in 97, left kidney removed and cancer free till 7/07. Mets in my lungs&bone Took Sutent 2rounds now Dr wants to start Torisel. Oh yeah did the IL2 thing at M.D. Anderson no shrinkage but no growth. Hope to do well on this drug Thanks for listening   john