On 2/28/2008
Kristennyc wrote:
I am very sorry to hear that your son is so sick. I am concerned about them putting him on a clinical trial BEFORE using 5-FU and Cisplatin.
It does seem from what you are telling us that your son is getting very sick, very fast. Does he have a feeding tube, and where is he being treated?
This disease is horrible, I watched my father deteriorate in a short 7 months. I cannot tell you what to expect as everyones situation is different. If they are giving him a prognosis of 6 months, then it does not sound like they are hopeful, and it could be longer than that, or shorter. Does he have mets? Where has it spread?
after they tried at Sloan Kettering the radiation and surgery(chemo was done earlier at another good hospital), they has nothing else so we tried folfox(oxaliplatin, leucovorin and fluorouracil(also called 5Fu) ) and avastin(all normally for colon cancer). He does not have colon cancer. he has metastatic testicular cancer to the bone. This chemo seemed to control the cancer but he does not want to continue since he feels so bad. I should also mention that we are trying a lot of things that are not normal cancer medical protocols. most are what are called off label(but so was the use of folfox and avastin). OGF, low dose interferon, buphenyl and artemisinin. We will probably look at Germany soon for another anti cancer treatment. He has time but they do not know how much and the first negative step will be paralysis.We are close so we are willing to try things as long as they do not hurt him. We thought that the folfox/avastin would not hurt but it did.
If you would llike to chat re the Drs. we are using and the off label protocols, give me a call 917 295 4699. All the Drs. we are using are US oncologists.