Mar 29, 2014 - 10:29 am
Four years...it seems like only yesterday. Hers has been a high quality four year journey with mCRC for two uncomplicated surgeries, only slight chemobrain from metronomic immunochemotherapy at home, mild scanxiety on blood tests every 5 weeks to 9 days, without the heavy chemo torture-follies and costs. The first year had some diagnostic confusion, they weren't ready for massively necrosed mets with CAM like cimetidine etc, and we weren't totally prepared for various medical subplots and pitfalls. As she got better and better, it seemed she was statistically ever closer to dying from the start as the likely scope of original disease spread emerged. This past year, we've been trying to integrate a potent celecoxib addition into her long term immunochemo treatment. Overall, some doctors are amazed that she's still here, she's "healthier" than her friends, goes around town with friends and family what-/whenever she wants, still got to be Mom for 20 somethings, and builds toward an indefinite future.
Although things are relatively good, we are in a slow motion battle between what appears to be a smouldering met trying to break free at any reduction in critical chemo components, potential hypercoagulability and potential chemo erosion of the bone marrow. This last struggle has been going on and around for 6 months. Today she had her third decline in CEA and CA19-9 which are hopfully headed toward baseline again. Her CEA is back in the 2s after surging to almost 6 following a near hypercoagulability episode last summer. We fight cancer daily - tooth, claw and nail while the cancer residues are fewer in number and small. She has to keep on her chemo, IV C and supplements, which requires substantial discipline. I do the heavy lift technically, and have to be ready with an instant analysis and response every blood draw. A few prior posts. That movie, Extraordinary Measures, seems wimpy.
Of course, in terms of maimstream and institutional medicine, she is their basic nightmare. She's only seen a genuine medical oncologist once (I've grilled six), ditto one radiation onc for surgeon's acceptance (12?), has no port and a small insurance policy. Our best ongoing support has been our surgeons, radiologist and CAM/internal med MD. Her formal 5FU-LV chemo program is five small pills a day, or less, about 400 mg total chemo (the tegafur in tegafur-uracil), under 10 dollars a day but recalcitrantly FDA unapproved in the US. She's been getting 25,000-55,000 iu of vitamin D3 per day for over 3 years along with her hundreds of 60,000-90,000 mg infusions of vitamin C, along with much borrowed from Life Extension's list and CAM therapeutic nutritionists like Abram Hoffer, MD-PhD. Sometimes it seems like we live in an alternate universe. No doubt some "regular" doctors might think she's lucky to be alive just for all the supplements alone.