Sep 18, 2012 - 1:36 pm
I was diagnosed with primary peritoneal carcinomatosis in July 2012 & began chemotherapy on taxol & carboplatin immediately. I didn't have surgery, I think because the disease was too extensive although my oncologist didn't say that explicitly. My CA 125 marker has gone from about 2700 on diagnosis, to 2400 a few weeks later, to 1650 a few weeks after that, to 1000 most recently. Had to forego the last scheduled chemo due to tingling & numbness in my limbs, which my oncologist said was due to taxol toxicity. He said he would have expected the numbness & tingling after a longer time on taxol. My 1st PET scan in July showed some spots on liver & involvement of lymph nodes as well as growths on the peritoneum itself. Had my 2nd PET scan yesterday; this afternoon will hear the results & also a revised plan for chemo.
I like my oncologist very much, except I would like more info. He answers all my questions, but he has commented that "sometimes patients get inundated with too much information." Not as far as I'm concerned! Would also be interested in recent survival rates for peritoneal cancer patients. The data I've seen seems more than a decade old.
Finally--would be interested in hearing from other peritoneal cancer patients. How do you come to terms with the diagnosis?