8 years war
Posted: Sun Mar 25, 2018 11:27 pm
2am, the phone rings. A world away, my wife is in the recovery room after a colonoscopy for intractable diarrhea. After a month, treated 4x for amoebic dysentery after visiting an exotic vacation locale, she'd lost 25% of body mass. Crying, she's just been told she has colon cancer instead, obstructing the scope 6 inches in, about 95% closed. The hospital staff wants to do surgery now.
What to do? Seriously compromised, she needs an intensive makeover first. Also a good CT scan, personal 2nd opinions, nutritional fortification, a well planned, well chosen, well prepared surgery, with additional post op treatment preparations. So, I say "You know my --- died of CRC. There's a first aid treatment for CRC, I'll call you back in an hour".
After the death of a parent decades earlier from mCRC, and a lineal grand parent before I was born, I've been aware of cimetidine and Life Extension Foundation for years. I also was somewhat aware that Japan had different cancer answers, as did some nutritional medicine researchers.
Over the next 1-2 days, I got my wife on 1600 mg cimetidine and many of the nutraceuticals recommended by Life Extension; more added asap. From there we customized the nutraceuticals based on research, availability and experimentation.
After a 4 week swirl of logistics, scan, consults, interviews, crosscurrents, arrangements and our experimental neoadjuvant immune treatment, the surgery gets done. At the operating room door the surgeon informs me, "I didn't get it all", and that clips outline a target area on the peritoneum for radiation. eek! However, a very surprised pathologist doesn't quite believe what he sees, the surgeon too, with a massive granulocytic attack - most cancer tissues turned into non-analyzable mush, with only some shards of the primary and lymph nodes left. The peritoneal met(s) and deposits in mesenteric fat have been wiped out, but there are serious contradictions, miscommunication, confusion all around now when the surgeon's answers, oncologists' opinions, other medical opinions and medical papers, are all juxtaposed. Their precise discrepancies will take me a long time to work out. Some reflect the usual (mis)handling of patients in 2010 for unexpected results, for para-aortic LN, formalism and changes between AJCC 6 and 7, and pessimism for peritoneal spread. Also a too common medical disdain for outsiders, for foreign, experimental or nonstandard treatments, even backed up by papers.
After surgery, we made another set of improvements to the nutraceuticals for 6 weeks, while getting medical opinions and doing research. We rely on no one group for answers. The nutraceuticals and cimetidine alone are not enough. Then we add Japanese style immunochemo with oral 5FU and get more response. Continuous daily chemo with UFT has begun.
Over some months, we struggle to damp down some slowly developing 5FU side effects. These are mostly mild stomatitis and those monitored in the CBC blood tests, which turn out to be largely driven by folic acid toxicity and a lack of certain nutrients. Temporary 5FU dose reduction allows some para-aortic mets to begin to reassert themselves until immunochemo improvements, nutraceuticals, extra blood tests, and another surgery restore my wife to a stable, near NED state, at 13 months post dx. 6mm lung thingies - one disappears, one turns to stone, one just sits there. At two years, some liver masses have surprisingly broken up, dramatically shrunken or disappeared. After removing all the folic acid and making nutrient improvements, her primary side effect is some chemo brain.
Long term we struggle with logistics due to sometimes disappearing supplies (-rs), house moves, family caretaker responsibilities, and the burden of continuous treatment with improvements across years. A major shortfall on any critical component yields a response in the markers that can take months to a year to mostly beat back down with chemistry changes. There is an unsteady hop and skip toward fewer pills and fewer IV vitamin C infusions across the years.
Here at 8 years, she feels fine and can still play the piano. CEA is back close to baseline ca 2.2, CA199 is 2-3x Upper Limit. With big gaps of time, AFP had stealthily doubled over 5x, to 40x higher in 2016, before being quickly clubbed down 75% with redoubled IV vitamin C to the immunochemo stack. The CT scan is overdue.
What to do? Seriously compromised, she needs an intensive makeover first. Also a good CT scan, personal 2nd opinions, nutritional fortification, a well planned, well chosen, well prepared surgery, with additional post op treatment preparations. So, I say "You know my --- died of CRC. There's a first aid treatment for CRC, I'll call you back in an hour".
After the death of a parent decades earlier from mCRC, and a lineal grand parent before I was born, I've been aware of cimetidine and Life Extension Foundation for years. I also was somewhat aware that Japan had different cancer answers, as did some nutritional medicine researchers.
Over the next 1-2 days, I got my wife on 1600 mg cimetidine and many of the nutraceuticals recommended by Life Extension; more added asap. From there we customized the nutraceuticals based on research, availability and experimentation.
After a 4 week swirl of logistics, scan, consults, interviews, crosscurrents, arrangements and our experimental neoadjuvant immune treatment, the surgery gets done. At the operating room door the surgeon informs me, "I didn't get it all", and that clips outline a target area on the peritoneum for radiation. eek! However, a very surprised pathologist doesn't quite believe what he sees, the surgeon too, with a massive granulocytic attack - most cancer tissues turned into non-analyzable mush, with only some shards of the primary and lymph nodes left. The peritoneal met(s) and deposits in mesenteric fat have been wiped out, but there are serious contradictions, miscommunication, confusion all around now when the surgeon's answers, oncologists' opinions, other medical opinions and medical papers, are all juxtaposed. Their precise discrepancies will take me a long time to work out. Some reflect the usual (mis)handling of patients in 2010 for unexpected results, for para-aortic LN, formalism and changes between AJCC 6 and 7, and pessimism for peritoneal spread. Also a too common medical disdain for outsiders, for foreign, experimental or nonstandard treatments, even backed up by papers.
After surgery, we made another set of improvements to the nutraceuticals for 6 weeks, while getting medical opinions and doing research. We rely on no one group for answers. The nutraceuticals and cimetidine alone are not enough. Then we add Japanese style immunochemo with oral 5FU and get more response. Continuous daily chemo with UFT has begun.
Over some months, we struggle to damp down some slowly developing 5FU side effects. These are mostly mild stomatitis and those monitored in the CBC blood tests, which turn out to be largely driven by folic acid toxicity and a lack of certain nutrients. Temporary 5FU dose reduction allows some para-aortic mets to begin to reassert themselves until immunochemo improvements, nutraceuticals, extra blood tests, and another surgery restore my wife to a stable, near NED state, at 13 months post dx. 6mm lung thingies - one disappears, one turns to stone, one just sits there. At two years, some liver masses have surprisingly broken up, dramatically shrunken or disappeared. After removing all the folic acid and making nutrient improvements, her primary side effect is some chemo brain.
Long term we struggle with logistics due to sometimes disappearing supplies (-rs), house moves, family caretaker responsibilities, and the burden of continuous treatment with improvements across years. A major shortfall on any critical component yields a response in the markers that can take months to a year to mostly beat back down with chemistry changes. There is an unsteady hop and skip toward fewer pills and fewer IV vitamin C infusions across the years.
Here at 8 years, she feels fine and can still play the piano. CEA is back close to baseline ca 2.2, CA199 is 2-3x Upper Limit. With big gaps of time, AFP had stealthily doubled over 5x, to 40x higher in 2016, before being quickly clubbed down 75% with redoubled IV vitamin C to the immunochemo stack. The CT scan is overdue.
Bad on me for poor recall on wee hour of the morning visits! THOSE need to stop. 
Thought rp was the author of this thread vs participant. 