oh the fun you can have when your cea just starts to rise
and one did something else, i got my christmas presents early!!!!!
they are expensive but i think worth it!
so far just the new things, all the old stuff is still happening!
iscador, artisiane, vit c, avemar, zinc percolate, coffee enemas, thalidamide coming tomorrow or soon.
some of these recommended by rgcc test results, will discuss rgcc test results in a different post after big test result meeting next week.
checkout hyperthermia and organising doing it myself.
checkout the blog for details and research.
feeling good and strong and lots of hope.
seeing a top gastroenterologist tomorrow re leaky gut and confirming treatment options
seeing top young onc for the mandatory second opinion.
hugs,
Pete
Comments
-
the gastroenterologist was informative
the gastro, by the way he scoped me a back in june2010 and found the tumour. anyway he backed up everything the naturopath had given me, he looked at the labels and commented. he like alovera, slippery elm, probiotics, the pancreatic enzymes and the gut relief poweder. he had a few minor reservations about some cofactors like peppermint oil. but said they should help, so keep on using.
he was impressed and i give my naturopath a tick.
he is against coffee enemas, due to the risk of physical trauma, he is not up on the benefits, but i have his opinion and will be careful.
he studied all the bloods and explained leaky gut in detail, its what the starving kids with distended stomachs have, he explained the simple tests are almost like a gimic to sell more supplements. i explained how the supplements helped during chemo.
he did a good physical exam of the small hernia, he said i could live for years with it, and not to worry about it at all unless i want to be a model on the beach.
he basically contradicted integrative gp about leaky gut, i like these disagreements, it gives me the tension in opinion i like to analyse. we used the stool samples i bought along just in case for some tests, so that wa good.
he said my surgeon he would trust with his sister. i already no i have the best team in sydney. but its nice to get unsolicited positive confirmation, that point along made the consult worth while. i have alot of faith invested in my team.
so i gave him the rgcc test results for curiousity, he sees me at this point of the journey. it was a really rich and educational experience, my kids were in the consult and they wrote up a summary of the key points. they did not miss much, given they heard the other doctor. my daughter asked why they disagreed. i said its just like mum and dad's arguments.
it cost $250 for the hour, i got back $225 from our medicare, the best $25 i have spent for an hours advice. our system ain't perfect but its pretty good when you get access to a great doctor who answers all your questions.
hugs,
Pete0 -
the onc is a phd rocket scientist
so what can i say about nick, a genius. a passionate young colorectal onc, did his pdh in angiogenuis.
he talked for an hour, i listened after filling in the blanks. he goes to all the conferences with my onc. he is in the team as a resource now. he reviewed the rgcc test, critically some good points and some weaknesses in method. he has seen the rgcc tests before, i left him a colour copy of my results, which he wanted. the issue is most of the colorectal results between patients are similar, that the blanket testing of 50 chemos is useless etc etc etc. the key point is the individualised molecular approach has merit, but its got along way to go. the essential point in testing methodology is that you cannot test angiogenisus effectively away from blood vessels.
he is not a fan of vit c, he is not a fan of thalidamide for me at this point.
he is on the same research panel that my onc heads, that directs all the clinical trials in sydney.
first a researcher recently proposed cimetidine as another study, i having mine tonight, i regret being scared off it due to the acid issues. he also liked the lef summary and just kept nodding. tanstaffl and lisa42 all the way with cimetidine. the research on stopped becuase its just so cheap and no money in it. f#$% f#$% F$%^ $uck , if this is a magic bullet thats never been pursued because of lack of profit, then i will make an effort to raise money to fund thsat clinical trial.
he would do the wait and see, he said my immune system is my best hope. that its depression from oxali is a bit longer than to be expected, but not surprising. he nodded when i discussed psk.
he explained he has some patients whose cea rises to under 10, have been their for years with no mets. a hopeful anecdote. other stories about the patten of met and if resectable.
if we get the spread of mets then its chemo, if its a solitary its surgery.
but he backed up, my onc current appraoch. they are in completely different hospitals and health areas. he mentioned sending another patients tumour to msk, for a genetic profile, i said can he send mine as well.
it was the most educational meeting. he is not into vitamine and wallnuts.
he is not into hyperthermia.
i left realising i have just found a great resource, we hit it off, i think he was impressed with my efforts and level of knowledge and how we discussed some pubmed articles.
tomorrow i do a live blood analysis and next week a hour review meeting of the rgcc data. i have heard the limits of rgcc tests from the onc establishment here, now i will here the strengths.
doing all i can do, learnt too much today, got to poop my cimetidine and melatonin. he did not know about melatonin anto cancer, but said it did not help him sleep.
hugs,
Pete0 -
Pete, Walnuts?? Pleasepete43lost_at_sea said:the onc is a phd rocket scientist
so what can i say about nick, a genius. a passionate young colorectal onc, did his pdh in angiogenuis.
he talked for an hour, i listened after filling in the blanks. he goes to all the conferences with my onc. he is in the team as a resource now. he reviewed the rgcc test, critically some good points and some weaknesses in method. he has seen the rgcc tests before, i left him a colour copy of my results, which he wanted. the issue is most of the colorectal results between patients are similar, that the blanket testing of 50 chemos is useless etc etc etc. the key point is the individualised molecular approach has merit, but its got along way to go. the essential point in testing methodology is that you cannot test angiogenisus effectively away from blood vessels.
he is not a fan of vit c, he is not a fan of thalidamide for me at this point.
he is on the same research panel that my onc heads, that directs all the clinical trials in sydney.
first a researcher recently proposed cimetidine as another study, i having mine tonight, i regret being scared off it due to the acid issues. he also liked the lef summary and just kept nodding. tanstaffl and lisa42 all the way with cimetidine. the research on stopped becuase its just so cheap and no money in it. f#$% f#$% F$%^ $uck , if this is a magic bullet thats never been pursued because of lack of profit, then i will make an effort to raise money to fund thsat clinical trial.
he would do the wait and see, he said my immune system is my best hope. that its depression from oxali is a bit longer than to be expected, but not surprising. he nodded when i discussed psk.
he explained he has some patients whose cea rises to under 10, have been their for years with no mets. a hopeful anecdote. other stories about the patten of met and if resectable.
if we get the spread of mets then its chemo, if its a solitary its surgery.
but he backed up, my onc current appraoch. they are in completely different hospitals and health areas. he mentioned sending another patients tumour to msk, for a genetic profile, i said can he send mine as well.
it was the most educational meeting. he is not into vitamine and wallnuts.
he is not into hyperthermia.
i left realising i have just found a great resource, we hit it off, i think he was impressed with my efforts and level of knowledge and how we discussed some pubmed articles.
tomorrow i do a live blood analysis and next week a hour review meeting of the rgcc data. i have heard the limits of rgcc tests from the onc establishment here, now i will here the strengths.
doing all i can do, learnt too much today, got to poop my cimetidine and melatonin. he did not know about melatonin anto cancer, but said it did not help him sleep.
hugs,
Pete
Pete, Walnuts?? Please explain, I think it's brazil nuts are good for selenium (I think). I just bought Aloe at Costco, don't know if it's anywhere like the aloe you see at the health food stores as the price was certainly much lower.0 -
neutron Jack emptys buildings...pete43lost_at_sea said:the onc is a phd rocket scientist
so what can i say about nick, a genius. a passionate young colorectal onc, did his pdh in angiogenuis.
he talked for an hour, i listened after filling in the blanks. he goes to all the conferences with my onc. he is in the team as a resource now. he reviewed the rgcc test, critically some good points and some weaknesses in method. he has seen the rgcc tests before, i left him a colour copy of my results, which he wanted. the issue is most of the colorectal results between patients are similar, that the blanket testing of 50 chemos is useless etc etc etc. the key point is the individualised molecular approach has merit, but its got along way to go. the essential point in testing methodology is that you cannot test angiogenisus effectively away from blood vessels.
he is not a fan of vit c, he is not a fan of thalidamide for me at this point.
he is on the same research panel that my onc heads, that directs all the clinical trials in sydney.
first a researcher recently proposed cimetidine as another study, i having mine tonight, i regret being scared off it due to the acid issues. he also liked the lef summary and just kept nodding. tanstaffl and lisa42 all the way with cimetidine. the research on stopped becuase its just so cheap and no money in it. f#$% f#$% F$%^ $uck , if this is a magic bullet thats never been pursued because of lack of profit, then i will make an effort to raise money to fund thsat clinical trial.
he would do the wait and see, he said my immune system is my best hope. that its depression from oxali is a bit longer than to be expected, but not surprising. he nodded when i discussed psk.
he explained he has some patients whose cea rises to under 10, have been their for years with no mets. a hopeful anecdote. other stories about the patten of met and if resectable.
if we get the spread of mets then its chemo, if its a solitary its surgery.
but he backed up, my onc current appraoch. they are in completely different hospitals and health areas. he mentioned sending another patients tumour to msk, for a genetic profile, i said can he send mine as well.
it was the most educational meeting. he is not into vitamine and wallnuts.
he is not into hyperthermia.
i left realising i have just found a great resource, we hit it off, i think he was impressed with my efforts and level of knowledge and how we discussed some pubmed articles.
tomorrow i do a live blood analysis and next week a hour review meeting of the rgcc data. i have heard the limits of rgcc tests from the onc establishment here, now i will here the strengths.
doing all i can do, learnt too much today, got to poop my cimetidine and melatonin. he did not know about melatonin anto cancer, but said it did not help him sleep.
hugs,
Pete
In the US, people used to call Jack Welch, former chaiman of GE, "Neutron Jack", because of his ruthless personnel reductions.
"if this is a magic bullet thats never been pursued because of lack of profit,"
Actually some business unit managers will worry that CIM can destroy whole profit centers. Enabling a cheap, purely oral formula that works with few side effects for the most endangered stage II and III patients. No port, no infusionist (save it for the vitamin C), its success means no Avastin or Erbitux later, no secondary meds (long expensive list), no secondary hospitalizations, no neurological consults for neuropathies. Some admins are probably worried that the CIM-UFT-LV-PSK type formula might be like a neutron bomb freeing up real estate around metastasized hospital complexes, pharm houses, and various symbiots...0 -
What does the CIM-UFT-LV-PSKtanstaafl said:neutron Jack emptys buildings...
In the US, people used to call Jack Welch, former chaiman of GE, "Neutron Jack", because of his ruthless personnel reductions.
"if this is a magic bullet thats never been pursued because of lack of profit,"
Actually some business unit managers will worry that CIM can destroy whole profit centers. Enabling a cheap, purely oral formula that works with few side effects for the most endangered stage II and III patients. No port, no infusionist (save it for the vitamin C), its success means no Avastin or Erbitux later, no secondary meds (long expensive list), no secondary hospitalizations, no neurological consults for neuropathies. Some admins are probably worried that the CIM-UFT-LV-PSK type formula might be like a neutron bomb freeing up real estate around metastasized hospital complexes, pharm houses, and various symbiots...
What does the CIM-UFT-LV-PSK stand for? Just curious what combo this is.
Busy researching.
Laura0 -
Inexpensive but...lauragb said:What does the CIM-UFT-LV-PSK
What does the CIM-UFT-LV-PSK stand for? Just curious what combo this is.
Busy researching.
Laura
cimetidine (CIM), tegafur-uracil (UFT), leucovorin (LV, a vit B9), polysaccharide K (PSK). An anti-metastasis, anti-angiogenic immunochemotherapy treatment from ~20 years of independent, mostly Japanese research on small funding. Inexpensive UFT appears not to be available in protected markets like US, Australia, and Canada. Leucovorin an inexpensive folate type vitamin is ridculously expensive in the US for a cheap vitamin. PSK clones, a protein-polysaccharide extract from Corilous versicolor mushrooms, are supplments in tbe US.
My wife has used it to prevent metastases for almost a year and get surgery when the doctors and surgeons were writing her off. A low dose formula, it killed 90-95% of the enlarged nodes, vs 99% with debilitation. The low doses could be used right up until surgery and right after surgery (this is not standard!) with good wound healing nutrition.0 -
Wow, lots of great info here!
Did you ask your doc about the wheat germ product you mentioned in your other post? I was reading about that, and thought it looked interesting (except for the possible GI side effects, which I don't need!). Thanks for sharing all of this! Ann0 -
I missed the wheat germannalexandria said:Wow, lots of great info here!
Did you ask your doc about the wheat germ product you mentioned in your other post? I was reading about that, and thought it looked interesting (except for the possible GI side effects, which I don't need!). Thanks for sharing all of this! Ann
I missed the wheat germ post...where was that??? What is it about?? Inquiring minds want to know!!!0 -
quinonessmokeyjoe said:I missed the wheat germ
I missed the wheat germ post...where was that??? What is it about?? Inquiring minds want to know!!!
Avemar is another quinone type material, from fermented wheat germ. The cumin seed oil you mentioned before has thymoquinone. Some quinones in nature seem to kill cancer cells well. Several chemo drugs are classified as quinones, like mitomycin C (a nasty 1970s-80s drug for colorectal cancer) and adriamycin (a heart withering, "big gun" chemo). There has been scientific discussion how similar the various quinones actions are or that some may have some common pathways of action.
The Japanese have published some good experience using menaquinone-4 (MK-4, the human vitamin K2 transport vitamer) against liver cancer, another adenocarcinoma. There is also preliminary research showing IV vitamin C and MK4 killing some resistant colon cancer cell lines. So we had some MK4 combinations tested against my wife's resistant tumor cells. With continuous 5FU (like from UFT) and vitamin C, it worked better than anything else, including 5FU + gemcitabine + oxilaplatin, or irinotecan. Taking a HIGH dose vitamin K2 like MK4, initially the 45mg Japanese dose, later 2-3x the Japanese dose (in 2-3 tiny caps) with low dose UFT (which actually makes some feel *better*), is a lot nicer than knock-your-socks-off Folfox or Foliri. My wife is still doing well on immunochemo (and huge supplements) at stage IV, no evidence of active disease, no neuropathies, never chemo sick and the MK-4 is good for osteoporosis too, used at the same dose in Japan.0 -
Just read your About Me, tanstaffl...tanstaafl said:quinones
Avemar is another quinone type material, from fermented wheat germ. The cumin seed oil you mentioned before has thymoquinone. Some quinones in nature seem to kill cancer cells well. Several chemo drugs are classified as quinones, like mitomycin C (a nasty 1970s-80s drug for colorectal cancer) and adriamycin (a heart withering, "big gun" chemo). There has been scientific discussion how similar the various quinones actions are or that some may have some common pathways of action.
The Japanese have published some good experience using menaquinone-4 (MK-4, the human vitamin K2 transport vitamer) against liver cancer, another adenocarcinoma. There is also preliminary research showing IV vitamin C and MK4 killing some resistant colon cancer cell lines. So we had some MK4 combinations tested against my wife's resistant tumor cells. With continuous 5FU (like from UFT) and vitamin C, it worked better than anything else, including 5FU + gemcitabine + oxilaplatin, or irinotecan. Taking a HIGH dose vitamin K2 like MK4, initially the 45mg Japanese dose, later 2-3x the Japanese dose (in 2-3 tiny caps) with low dose UFT (which actually makes some feel *better*), is a lot nicer than knock-your-socks-off Folfox or Foliri. My wife is still doing well on immunochemo (and huge supplements) at stage IV, no evidence of active disease, no neuropathies, never chemo sick and the MK-4 is good for osteoporosis too, used at the same dose in Japan.
lots of interesting information there, thanks for sharing it. I've decided to keep doing the cimetidine, rather than stopping post-surgery. Seems like it can't hurt and really, once you're stage IV, anything that might help is worth trying. Just out of curiousity, how did you track down so much of the Japanese research? And did your doctor help you figure what testing to do on your wife's samples? My doctor, who happens to be the head oncologist of a large facility here in Seattle, not only doesn't believe in CA 19-9 testing, he also doesn't believe in testing treatments on live cells. sigh...0 -
It's in Pete's coffee enema post..smokeyjoe said:I missed the wheat germ
I missed the wheat germ post...where was that??? What is it about?? Inquiring minds want to know!!!
you may have been distracted by that!
He just mentioned that his doc approved of the use of Avemar. I looked it up and found that the Sloane-Kettering site had some good info on it. You can buy it online but it's pricey. I'm going to check with my naturopath, see what she thinks. My medical bills are pretty high already, and now that I'm adding cimetidine to the mix, I've got to kind of pick and choose what I spend money on! 0 -
bargainsannalexandria said:It's in Pete's coffee enema post..
you may have been distracted by that! He just mentioned that his doc approved of the use of Avemar. I looked it up and found that the Sloane-Kettering site had some good info on it. You can buy it online but it's pricey. I'm going to check with my naturopath, see what she thinks. My medical bills are pretty high already, and now that I'm adding cimetidine to the mix, I've got to kind of pick and choose what I spend money on!
Cimetidine should be cheap at Walmart, like $10 for 90 x 800mg, or even better at some groceries' generic loss leaders. About 1/10 the OTC retail price of some high priced drug stores. Osteo K runs $35-50/mo for the 45 mg menaquinone4 (K2) per day formula in 5 big caps with calcium citrate but we can't use OsteoK anymore since my wife is on even higher doses of MK4 and extremely high vitamin D3, too (OsteoK is now excess calcium relative to my wife even at the original Japanese dosage of MK4 because of enhanced absorption with such high vitamin D).0 -
finding the "magic oncologist"annalexandria said:Just read your About Me, tanstaffl...
lots of interesting information there, thanks for sharing it. I've decided to keep doing the cimetidine, rather than stopping post-surgery. Seems like it can't hurt and really, once you're stage IV, anything that might help is worth trying. Just out of curiousity, how did you track down so much of the Japanese research? And did your doctor help you figure what testing to do on your wife's samples? My doctor, who happens to be the head oncologist of a large facility here in Seattle, not only doesn't believe in CA 19-9 testing, he also doesn't believe in testing treatments on live cells. sigh...
Thank for reading the "About me". Any critiques or suggestions are welcome. Sounds like you need a second doctor for alternatives support, new doctor time, or both. We've run two doctors plus outside, one-time consults.
Mostly picked the Japanese authored research papers and abstracts off the internet, with some library raids. I would prefer a good medical library full time but happen to not live near one. I specifically added the menaquinones for the live cell lab tests. Based on the Japanese researchers, our US oncologists often simplistically mistake CEA's superiority on perhaps 3/4 of the CRC patients, against a minority of cases with CA19-9 for monitoring (where CA19-9 has some admitted complexities), and especially the CA19-9 tissue stain for choosing cimetidine (or even Avastin). The CA19-9 tissue staining has fewer complexities and is definitive with hard-to-get CSLEX1 stains but can be an important investment for long term use and reliance (if the results are very weak stains or negative, that's important too).0 -
its expensiveannalexandria said:It's in Pete's coffee enema post..
you may have been distracted by that! He just mentioned that his doc approved of the use of Avemar. I looked it up and found that the Sloane-Kettering site had some good info on it. You can buy it online but it's pricey. I'm going to check with my naturopath, see what she thinks. My medical bills are pretty high already, and now that I'm adding cimetidine to the mix, I've got to kind of pick and choose what I spend money on!
here is hoping.
not my onc team, just the integrative gp team.
not sure of long term commitment to avemar, its expensive.
nuts are cheap.0 -
tanstaafl thanks for filling in the blankstanstaafl said:bargains
Cimetidine should be cheap at Walmart, like $10 for 90 x 800mg, or even better at some groceries' generic loss leaders. About 1/10 the OTC retail price of some high priced drug stores. Osteo K runs $35-50/mo for the 45 mg menaquinone4 (K2) per day formula in 5 big caps with calcium citrate but we can't use OsteoK anymore since my wife is on even higher doses of MK4 and extremely high vitamin D3, too (OsteoK is now excess calcium relative to my wife even at the original Japanese dosage of MK4 because of enhanced absorption with such high vitamin D).
i have been busy doing the rounds and the treatments and buying the stuff.0 -
Anyone taking Red Yeastpete43lost_at_sea said:its expensive
here is hoping.
not my onc team, just the integrative gp team.
not sure of long term commitment to avemar, its expensive.
nuts are cheap.
Anyone taking Red Yeast Rice?? Apparently there is some correlation to people on statin drugs having a lower cancer rate, and red yeast rice has something in it that is identical to a prescription statin drug. (brain freeze cannot think of the name of the drug). Sorry Pete if we're highjacking your post....0 -
No don't stop..this is allsmokeyjoe said:Anyone taking Red Yeast
Anyone taking Red Yeast Rice?? Apparently there is some correlation to people on statin drugs having a lower cancer rate, and red yeast rice has something in it that is identical to a prescription statin drug. (brain freeze cannot think of the name of the drug). Sorry Pete if we're highjacking your post....
No don't stop..this is all interesting!0 -
De novo cholesterogenesis isplh4gail said:No don't stop..this is all
No don't stop..this is all interesting!
De novo cholesterogenesis is required for tumor growth, and HMGCR activities are upregulated in colon tumors [17–20]. A growing body of evidence supports the notion that statins including lovastatin may inhibit colon cancer cell growth and thereby have preventive potential for reducing the incidence of colon cancer [21–23]. In a population-based study, statin drug consumption was associated with a 47% reduced risk of colon cancer [24]. The presented study was designed to determine the effect of RYR containing multiple monacolins and lovastatin vs. lovastatin alone on colon cancer cell growth and apoptosis0 -
hijack awaysmokeyjoe said:De novo cholesterogenesis is
De novo cholesterogenesis is required for tumor growth, and HMGCR activities are upregulated in colon tumors [17–20]. A growing body of evidence supports the notion that statins including lovastatin may inhibit colon cancer cell growth and thereby have preventive potential for reducing the incidence of colon cancer [21–23]. In a population-based study, statin drug consumption was associated with a 47% reduced risk of colon cancer [24]. The presented study was designed to determine the effect of RYR containing multiple monacolins and lovastatin vs. lovastatin alone on colon cancer cell growth and apoptosis
hugs,
pete0
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