On 5/12/2007
Bscran2007 wrote:
I am considering starting this Phase III clinical trial. Does anyone have any information on side-effects and effectiveness.
Some personal success stories would be great.
Thanks
Sorry for the delay in responding. I just found this message. I've been participating in this study and it was determined after my first treatment that I must be getting the Bay 43-9006 (sorafenib) , not the placebo, because of the severity and type of side effects. I was taking four pills of sorafenib a day and had horrible hand-foot syndrome--major pain on the bottoms of my feet, peeling and dead areas on my feet. Also a lot of joint pain and fatigue, some rash that was consistent with sorafenib side effects. My dose was cut to 2 pills a day, and that helped somewhat but I still had many painful days when I couldn't walk. I now am on 1 pill a day and my feet are much better. My main side effect is a lot of fatigue for the first week, but then I feel pretty good for the next two weeks. (It's a three-week cycle.) When I joined the study, I had two tumors--one in my right sphenoid sinus (difficult to reach for surgery) and one in the lymph nodes above my collarbone. I had a CT-guided biopsy done of the collarbone tumor done a couple of weeks ago and it was declared benign, but that probably had nothing to do with the treatment. The sinus tumor is malignant but seems to be stable and that stability is probably due to the chemo. I've had six treatments and probably will stay with the study for the rest of the sessions (10 in all).