collecting duct tumor

My husband was diagnosied with Kidney cancer 4/08 and had his kidney removed and nodes outside the kidney as well. He then went on Sutent from May 08 until Jan 09 when his 3rd scan showed the cancer had returned. The doctors then changed the diagnosis to Collecting Duct tumor and he had cyberknife radiation 3 weeks ago and will have another scan in 10 days and will then go on Temserolimus. Dose anyone have any information on this chemo as the sutent was very hard to tolerate.

This is called Torisel and most people can tolerate the side effects better than those of Sutent.  My husband could not tolerate the side effects and was removed from Torisel.  Good luck and god bless.

Sandi

My husband was originally diagnosed with Collecting Duct Carcinoma. We went to another facility and their pathologist recommended that my husband get a genetic test for a hereditary syndrome, which came back positive. HLRCC. Sutent was my husbands first chemo, stopped working after 2 cycles. Terrible side-effects. Then we tried Gemzar and cystplatin but it was too hard on his remaining kidney. Since finding out he has HLRCC we have been in touch with a physician at NCI and are now on Tarceva and Avastin (lung cancer chemo). The Dr. at NCI has seen other patients with HLRCC and this combination shows some promise. It's not a cure in anyway, but slows the progression. HLRCC is very aggressive. I know CDC is very rare and aggressive, finding out my husband had HLRCC wasnt better than the diagnosis of CDC, although we think we have a couple of meds to treat it with. I know there is no standard treatment for CDC. I dont know if this combination of meds would do anything for CDC, but seeing that HLRCC and CDC have some common characteristics, I dont see what the harm in asking your dr. abou it would do. Avastin is not approved for renal cell. I hope any of this info is useful to yall. Respectfully, Jennifer