An update

About a month ago I wrote about my dad and our awful experience this past Christmas. We had driven from NY to Dana Farber (Boston) on 12/23 for a quick day trip to get him cleared for a new clinical trial that his oncologist was very excited about. Unfortunately he was emergently admitted to hosp that day as they had found lesions on his brain and in his hip. He had brain surgery 2 days later and then had a total hip replacement. Which was then followed by radiation to both brain and hip area- also had determined he had lesions in his shoulder area to which they tried to treat with radiation. Fast forward to today- we are now back home in NY (actually were ble to celebrate Christmas one month to the day later). HIs radiation treatments have been completed and he has just started the drug torisel. (Sutent had failed him last year when we had learned of the metastises). He continues to have some pain and is very tired but we are happy to have him home. His spirits are good and he has good appetite as well- he had lost 25lbs while in Boston at the hospital but has since gained it all back. I wanted to know for those of you out there who have been on Torisel and have had success, could you tell it was working? We won't get scans and an idea for about 2 months so just curious. In the meantime our goal is to get him out of this cold weather and down to their place in Florida for a couple of weeks possibly the month of March. Our oncologist has approved this and we are currently in the process of seeking out RCC Oncologist in the Ft. Lauderdale/WPB/Miami area.

We continue to fight this fight and hope to hear some good news soon.

I know there are people here who have done well on Torisel, and I am sure you will hear from them (do check the kidney cancer board here, too, as we seem to be split across two boards - don't know why!)

 

Also, may I strongly recommend yet another site, a mailing list called kidney-onc, which is part of ACOR (American Cancer Organisation?) - it is full of expertise and knowledge, and a lot of patient experience (lots of us here are there too).

You can join on http://cancerguide.org/kofaq/

All the very best, Julie.

 

On 2/11/2009 JulieUK wrote:

I know there are people here who have done well on Torisel, and I am sure you will hear from them (do check the kidney cancer board here, too, as we seem to be split across two boards - don't know why!)

 

Also, may I strongly recommend yet another site, a mailing list called kidney-onc, which is part of ACOR (American Cancer Organisation?) - it is full of expertise and knowledge, and a lot of patient experience (lots of us here are there too).

You can join on http://cancerguide.org/kofaq/

All the very best, Julie.

Hi Julie,

Good advice. ACOR definition is not exactly as you listed so juat to clarify:

"Kidney-Onc is hosted by ACOR, the Association of On-Line Cancer Resources. ACOR hosts mailing lists for almost every type of cancer, so if you found this page and are dealing with a form of cancer we don't cover on Kidney-Onc, ACOR very likely has a mailing list which does cover it."

Carl

The thing with RCC is that you usually dont know if is working until you get the scans. I have been thru 3 other chemos before going on Torisel  4 months ago.  I had very few bad side effects except for tiredness and a lack  of appetite the day after chemo. The good news is that the Torisel shrunk the tumor in my back by 50% and the one in my lungs have nearly gone.  The kidney tumor shrunk about 20%.