Sarcoma Cancer

My nephew (age 34) was diagnosed with cancer-stage IV in August. Originally they said that it was Sarcomatoid Renal Cell Carcinoma. Since then they say that they are fairly certain that it is
Retroperitoneal sarcoma. He has cancer on his kidney, liver and against the Vena Cava as well as nodules on his lungs. When they tought it was kiney based they did Gemzar and Xeloda for his chemo regiment. They are now using Gemzar with Taxotere. I am looking for anyone that can give me any feedback on similar cancers and/or treatments as well as positive experiences with hospitals or specialists. Please let me know anything that might help.

Bobbie,

I'm 39 years old and was diagnosed with sarcomatoid rcc in January of this year; I too was stage IV with mets in the adrenal gland, lymph nodes, and lungs. I've been treated at MD Anderson with Avastin, Gemzar, Adrimycin, Sutent, Xeloda, and Interferon (which I didn't tolerate). The cancer has progressed but not nearly as fast as doctors expected given the aggressive nature of my cancer. I will go on a clinical trial starting next week, that combines the approved drug Nexavar (Sorafenib) with and experimental drug, AMG 386.

Best of luck to your nephew!

Tony

 

On 11/30/2006 Bobbiej wrote:

My nephew (age 34) was diagnosed with cancer-stage IV in August. Originally they said that it was Sarcomatoid Renal Cell Carcinoma. Since then they say that they are fairly certain that it is Retroperitoneal sarcoma. He has cancer on his kidney, liver and against the Vena Cava as well as nodules on his lungs. When they tought it was kiney based they did Gemzar and Xeloda for his chemo regiment. They are now using Gemzar with Taxotere. I am looking for anyone that can give me any feedback on similar cancers and/or treatments as well as positive experiences with hospitals or specialists. Please let me know anything that might help.

Sorry for the delay in responding to this message.  I currently have Retroperitoneal sarcoma.  I discovered this back in 2002.  I had radiation in the spring of that year and then had the tumor partially removed in July 2002.  My surgery was done at MD Anderson Cancer Center in Houston TX.  They have a dedicated Sarcoma Center there.  My kidney was also remove and the turmor was around the Vena Cava.  Due the excessive bleeding during the operation (they actually cut my Vena Cava) the doctor had to leave the remaining tissue as it was too dangerous to remove.  One year from the date of the operation, the tumor began to enlarge, as well as nodes were discovered in my lungs and liver.   However, by a blessing from God, everything has been stable since that date.  I have not had any additional treatement.  My 5th year is coming up soon.  

You can also go to the Sacarmo Foundation of America and obtain additional information.   I hope and pray that your nephew gets fast and proper treatment.  This is classified as a rare cancer and you need special professionals addressing the problem.  Most oncologist do not understand this cancer and just take the standard protocol.  You will need to find a doctor that is willing to address the treatment aggressively. 

John S.  

 

 

On 12/3/2006 Tony The Tiger wrote:

Bobbie,

I'm 39 years old and was diagnosed with sarcomatoid rcc in January of this year; I too was stage IV with mets in the adrenal gland, lymph nodes, and lungs. I've been treated at MD Anderson with Avastin, Gemzar, Adrimycin, Sutent, Xeloda, and Interferon (which I didn't tolerate). The cancer has progressed but not nearly as fast as doctors expected given the aggressive nature of my cancer. I will go on a clinical trial starting next week, that combines the approved drug Nexavar (Sorafenib) with and experimental drug, AMG 386.

Best of luck to your nephew!

Tony

Tony - MD Anderson has  recommended Nexavar in conjunction with AMG-386 following failure of Sutent after 5 months.  It has been 5.5 years since my Stage  IV diagnosis.  What results and side effects did you have from AMG-386 and Nexavar? Any information regarding your regimen and treatment in this clinical trial would be appreciated. Dr. Hong is my Phase 1 doctor. Thanks.

 

Steve