Jan 03, 2013 - 2:11 pm
Since my tumor was discovered I haven't seen a medical oncologist. I went straight to our university urology department and saw the surgeon and he advised a radical nephrectomy. From my reading, and talking to my uncle, who is a medical oncologist, although retired about 7 years, it looked clear that it had to come out. I didn't get second opinions.
Now that the tumor is removed, I'm looking around at clinical trials to see if there's anything that could help reduce my chances of recurrence, which appears to be quite high with my stage and grade.
There are 2 in my area that are available (possibly a third). I'm trying now to get into a medical oncologist to help me pick one. That's turning into being a bit problematic. I'm now what is considered a "new patient", and probably also considered cancer free, so the appointment dates I'm being given are weeks away. Some of trials require you to start the drugs within a certain number of weeks of having the nephrectomy, so I'm pushing to get my appointment date moved up.
The two most likely candidates are votrient (pazopanib) and afinitor (everolimus). The votrient appears to be slightly more toxic and have more serious side effects, but also appears to be slightly more effective.
Although I'm going to wait until I see the medical oncologist to choose, I'm wondering if anyone here has advice on which one is more likely to be effective? Is it always like that, that the more effective drug also has more side effects and higher toxicity?
Both trials are double-blind studies with a placebo arm. I'm not too excited about possibly being put in a placebo arm and receiving no treatment. On the other hand, if that's a risk I have to take, then I suppose I may go ahead and do it.
I'm having trouble deciding if I should see one of the PI's of the clinical trials for advice, or if I should try and find a medical oncologist that is independent of the trials for advice. I suppose I'm worried the PI's will push their study, but that may be an unfounded concern. Just finding medical oncologists with an interest and experience in RCC has been challenging. I'm lucky in that I live in an area with 3-4 major cancer centers within driving distance, so I should count my blessings. Picking is an issue, and then getting in is the second issue.
I'm very glad I found this board to at least vent some thoughts and feelings (and read other's experiences as well).