Apr 28, 2011 - 1:47 pm
I can use any feedback on this expectation. brief history typical to many of your-surgery 12/08 followed by 6 carboplatin/taxol and external radiation 6 weeks and 3 treatments of brachytherapy, all jan-july 2009. First recurrence in para-aortic lymphn nodes 5 months after this treatment ended. CT/PET in July 2010 clear after treatment with tomotherapy radiation handled first recurrence. Second recuurence in Nov. 2010 -chemo not started until Jan. 2011 due to shortages of both Cisplatin and Adriamycin (don't get me started on that topic !). I have had 4 treatments with Cisplatin and Adriamycin -it has been brutal on my blood values-taking neupogen and procrit and still needed transfusion. But we did CT scan and while the radiologist characrertized significant reduction in number of tumors and size, he called it a partial response to treatment. When i asked my onc what he cosidered a good result, he outlined further shrinkage in pulmonary tumors but not NED. Some of smaller and newer pulmonary tumors did disappear but the ones at 9,8 and 7 mm went down to 7,5, and 3 respectively. So after a very strong drug combo considered mostly likely in efficacy, I had my fifth chemo yesterday and the discussion that NED is not an expectation and while the existing tumors may not be where future growth occurs (still may be the ability of USPC to run and hide in minuscule form through treatments) I face quarterly monitoring and probable reliance on other drugs for the future. I wonder if any of you have advice on how to deal with this "lowered expectation"as I am still reeling.