Rcc With Mets to Brain

Hello. I am new to this site & would love any information from people in similar situations. My father is 63yo & was perfectly healthy until 2 months ago when he developed stroke-like symptoms. 3 weeks and two hospital stays later, we were told that he has Stage IV RCC with a 9x13 mass on his right kidney, as well as mets on both lungs, lymph nodes & one in his brain. The urologists & oncologists had ruled out removal of the kidney/mass. He's had gamma knife radiation to stop the growth of the brain metastasis. He's on steroids for 8 weeks following the gamma knife & then finally, he'll be able to start IL-2 therapy. The oncologists, gamma knife team, as well as an oncologist friend have all told me that he doesn't have more than a few months. It's hard to swallow bc he's always been healthy & even now, he looks absolutely fine. We're blessed that he's not in any pain or discomfort. I follow every lead I get about clinical trials, stem cell transplants, etc., but we get ruled out of everything bc of the mass in his brain. Can anyone help me? I haven't come across even one success story of RCC with a brain met. that's survived.

I'm so sorry to hear about your dad. My husband was diagnosed with RCC Aug.14,2005. He had a massive brain tumor that they removed that day. He was hemorraging in his brain so his surgery was an emergency situation. He has mets to his lungs and a 14cm tumor in his kidney. Everytime he was supposed to have something done to help it was prevented for other reasons. He went in to have the kidney removed and his calcium level was very high and they wouldn't do the surgery. Now just yesterday we found out the results of his last CT scan. The mets to his lungs are more numerous and larger, it is now in his bones, there is a spot on his left kidney and one on his liver. His only symptoms leading up to this were dizziness and nausea. His tumor was pressing on the nausea center in the brain. He had blood in his urine once and we stupidly ignored since it never happened again. He too is not in any pain as of yet, but they tell me they will be surprised if he makes it to the end ot this year. There are some cases I have read about where people live for 5 years with this disease, but my husband did not want to live through treatments worse than the disease itself. There is a new experimental drug called "Sorafanib" that he considered trying, but that was before we found out his condition has worsened. I pray you find someone who can encourage you and give you more postive results. Best of luck to you and God bless!

There is an email support list specific to kidney cancer; see http://cancerguide.org/kofaq/ for more information. You can exchange information with others who have dealt with the same problem on that list.

THank you both for your responses. I appreacite all your help.

 

On 11/9/2005 Turmoil wrote:

I'm so sorry to hear about your dad. My husband was diagnosed with RCC Aug.14,2005. He had a massive brain tumor that they removed that day. He was hemorraging in his brain so his surgery was an emergency situation. He has mets to his lungs and a 14cm tumor in his kidney. Everytime he was supposed to have something done to help it was prevented for other reasons. He went in to have the kidney removed and his calcium level was very high and they wouldn't do the surgery. Now just yesterday we found out the results of his last CT scan. The mets to his lungs are more numerous and larger, it is now in his bones, there is a spot on his left kidney and one on his liver. His only symptoms leading up to this were dizziness and nausea. His tumor was pressing on the nausea center in the brain. He had blood in his urine once and we stupidly ignored since it never happened again. He too is not in any pain as of yet, but they tell me they will be surprised if he makes it to the end ot this year. There are some cases I have read about where people live for 5 years with this disease, but my husband did not want to live through treatments worse than the disease itself. There is a new experimental drug called "Sorafanib" that he considered trying, but that was before we found out his condition has worsened. I pray you find someone who can encourage you and give you more postive results. Best of luck to you and God bless!

did you ever get to try sutent?  any luck on it?

Dally