I found this site a couple of days ago when I was looking for other people that were experiencing the same side effects as my husband. It was then I realized that maybe he is one of the few people taking Xeloda, Gemzar, and Avastin for RCC!
A little background:
Last fall my husband became sick with his usual sinus infection for this time of the year. Anyway, it never seemed to get better and after 3 rounds on the same antibiotic for infections and sleeping for 2 or 3 days at a time, he pushed his primary doctor to do a cat scan. They found an 11 cm mass on his left kidney. Within a week we were at the hospital having his kidney removed. While the surgeon was in there, he also removed part of his intestines and saw an enlarged lymph node on his lung but thought it to be too risky to crack his chest to remove that as well. My husband healed well after the surgery, but after a few weeks and prior to meeting with the oncologist again, he started to have an enlarged lymph node on his neck. When they reran all of his scans, they found that yes it was a tumor and he still had enlarged lymph nodes on his lungs. The doc put him on the clinical trial for Xeloda, Gemzar, and Avastin.
The tumor in his neck had gotten so large and the pain radiated so much that he was on pain killers and was using a wheelchair to get to his appointments. Within 2 cycles (3 weeks on/1 week off) he was functioning much better and within 3 cycles, we could barely see the tumor. The good part about having a tumor on your neck is you can see progress!! Anyway, after a particularly stressful summer, the tumor seemed to be growing again. Scans showed it had grown 2 cms in each direction. They decided to keep him on the trial and see if the meds start working again. If not, the doc talked about the drugs usually used for kidney cancer or radiation. The side effects from the meds have been manageable- some hand-foot syndrome, but this cycle he has been having serious back and side pain. My husband is very active, so we thought the back pain was a result of doing too much after being sedentary for so many months. He started doing acupuncture every other week, which helps some, but it seems to be getting worse. Its a moving pain so its always in a different spot. Anyway, Google brought me to other people who were taking these drugs for breast cancer and had similar symptoms as a side effect of Xeloda.
So besides an intro, I was wondering- is he the only one on this board taking Xeloda, Gemzar, and Avastin for sarcomatoid RCC?
Its nice to meet everyone and happy Friday!