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anyone else tried GCMAF or got any good or bad stories about it UPDATED great nagalase result <0.9

pete43lost_at_sea's picture
pete43lost_at_sea
Posts: 3915
Joined: Nov 2010

started on gcmaf yesterday, got a runny nose.
just google it, its all about stimulating your immune system
nothing on pubmed for colorectal but the method of action should be the same.
here is the pubmed link for breast cancer test, yes i know not in vivo.
http://www.ncbi.nlm.nih.gov/pubmed/22213287

it costs $170 dollars aud a week , planning for a 30 weeks program. we are stuffed financially temporarily but i have no will power when promising alternative advocates smile and says this is worth a shot. these are friends i trust. well here is hoping.

will check nagalase levels after 8 weeks to see if its worth the dollars.

anyone else done nagalase testing in conjunction with cea tests ?
I would be interested in your experiences as i have started down this path.

especially when still nothing on the table as far as treatments from conventional.
when i die one day, i want to be reincarnated as a guineapig, i figure thats fair.

i need to sell assets but so far wife not agreeing. so i have been cutting back non essential supplements and doctors visits and tests. this has in itself been kind of stressful. the positive to having more focused therapies / supplements is i guess i can tie the biological results to what i am trying.

its only money i keep telling myself. the compound interest on the credit cards is about as scary as the rate of cea rise.

its taking a while to get the emotions of fear, frustration and dissapointment under control with regard to the latest cea rise.

anyway thats life downunder. i am questioning many aspects of the alternative program i am on.

the only good news is that my gut dysbios is back big time, that my over zealous enemas may have upset my gut bacteria. certainly got some symptoms leakage, gas etc etc recently. that i should have realised was a problem with gut bacteria. so maybe these are somehow related to my rising cea.

so i am back onto progurt probiotic that fixed my gut ultra quick a few months ago.

anyway i am really interested if anyone else has tried gcmaf or has any stories.
its method of action is based on the immune system, i am also doing the nagalase blood test.

smile its a lovelly day to be searching for health.

hugs,
Pete

still sticking to the vegan diet, but its on a short leash.

my peace of mind has deserted me momentarily, like my mobile phone for 24 hours.

i think loosing my phone and my contacts, recordings and photos was as stressful the cea rise.

how a test result can tip my world upside down is intriuging for me. i need to realise is still am well, have no symptoms and great health. to let a test result dampen my mood is kind silly, i don't want to ignore the result, just deal with the result appropriately.

i am going to have to come up with a good framework for coping with "setup backs", thats what the alternative crowd call normal tumour progression.

just a few randon thoughts here, soon the peace of sleep, it can come a minute to soon.

Sundanceh's picture
Sundanceh
Posts: 4266
Joined: Jun 2009

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herdizziness's picture
herdizziness
Posts: 3388
Joined: Apr 2010

things like "Help NHF get the word out about GcMAF and other proven cures for cancer that are being ignored" and sell their product at $150.00 or more a whack, I'd steer as clear away from this as I can.
This smacks of charletons taking money from people desperate in their cancer battle. I swear Pete you find the oddest things to do to your poor body, I truly am starting to feel sorry for it.

http://scienceblog.cancerresearchuk.org/2008/12/03/cancer-cured-for-good-gc-maf-and-the-miracle-cure/

Again people, if it sounds too good to be true, it probably is quackery.
Winter Marie

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tanstaafl
Posts: 936
Joined: Oct 2010

Thanks for that link, Marie. The lively comments are more informative than the blog. Any insinuation that GcMAF is "quackery" seems premature. GcMAF clearly has achieved a degree of scientific plausibility, like papers in Nature, and by Judah Folkman, as mentioned in the link's comments. GcMAF's conventional status appears to be experimental in an unfunded developmental stage, the commercial graveyard of many, or most, legitimate discoveries as well as the technical failures.

The FDA version of drug development and approval is simply prohibitive for most promising treatment technologies, regardless of merit. $150 for a small retail volume, injectable biotech product is amazingly cheap in comparison to what we see for approved treatments. Much of alternative medicine that is biologically and biochemically based functions in a gray market whose larger competitors do attempt to make it black.

I hope that interested people are able shine more factual light on the GcMAF story and communicate their actual observations, warts and all. There are several layers of players in this story that we need to keep mind when conclusory statements are made.

manwithnoname
Posts: 390
Joined: Jun 2012

Well, you posted a link from a blog circa 2008 from a cancer charity that seemed to go out of it's way to show what nonsense Yamamotos theory, work, and results were.

HOWEVER, the story does not start or end with that blog, I have already posted a link showing J.Folkman and a very impressive international team found the same results.

So a noble prize winner isn't enough for the cancer charity who never bothered to look any further than Yamamoto, who I must agree seemed very suspect,... still how about these;

Department of Internal Medicine, Erasmus Medical Center, Genetic Laboratory, Rotterdam,
Department of Anatomy, Histology and Forensic Medicine, Florence, Italy.
Department of Ophthalmology and Visual Sciences, University of Kentucky, Lexington, Kentucky
Clinical Research Center, National Hospital Organization Nagasaki Medical Center
Department of Hepatology, Nagasaki University Graduate School of Biomedical Sciences, Omura, Japan
Division of Surgical Research, Children's Hospital, Boston,

And there are more HIGHLY reputable institutions and researchers finding the same kind of results and publishing in the highest quality journals.
Also Yamamoto NEVER in any of his papers said he had 'cured' cancer as the blog proclaims, also Yamamoto ran all of his papers by Dr. Sidney Weinhouse (Google him) before publishing.

Now as for their 'critique' about 'pre-treated' patients and 'small numbers' they have obviously never looked at a brain tumour clinical trial where this is standard! ( I have read hundreds)

ALL brain tumour clinical trials have HEAVILY PRE-TREATED patients with VERY small numbers, yet they still give them new Chemo to test, and if it does work ( to a degree) the FDA grants a licence from those small trial results.

Now as for the price of $150 for about a months supply, Avastin costs $20,000 per month and prolongs life for a median of 4.7 months just to give you some perspective.

I agree with you there are many, many charlatans out there who prey on cancer patients, but at the same time there are very powerful Pharmacutical companies who do the same. Gc-MAF cannot be patented so there is NO interest to do all of the double blind $300 million dollar trials with large cohorts.

I am not saying Gc-maf is a 'magic bullet' everyone is unique and so is every cancer, STILL, if I look at a treatments potential benefit versus cost/negative side affects then Gc-MAF is VERY worthy of a trial.

That's my 2 cents and Im done with it. Believe what you want.

janderson1964
Posts: 1503
Joined: Oct 2011

That is a very strong argument for gcmaf. I am keeping it on the back burner but should i reccur again i will most likely try it and monitor its progress or lack there of through ct scans. Please keep us poated.

pete43lost_at_sea's picture
pete43lost_at_sea
Posts: 3915
Joined: Nov 2010

your detailed answer meant i could unload more thoughts surrounding my gcmaf treatment and why it appears i am the first here.

hugs,
pete

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PhillieG
Posts: 4659
Joined: May 2005

"Avastin costs $20,000 per month and prolongs life for a median of 4.7 months just to give you some perspective."
I was on it for 10 doses 8 years ago. Just to give you another perspective...

manwithnoname
Posts: 390
Joined: Jun 2012

Glad it helped, not saying Avastin doesn't work, it helped cure someone we know of GBM, the most malignant brain tumour (off label) many countries stopped using it down to costs and their view of it's limited benefit.
However if it cures even one person its worth it IMHO.

pete43lost_at_sea's picture
pete43lost_at_sea
Posts: 3915
Joined: Nov 2010

Dear winter,

thanks for chimming in here, i read your link, and i empathise with your understanding but don't agree with its conclusions.

for me i trust and have faith in my integrative onc, he advised and sourced and injected gcmaf into my tummy. he are great friends now. i may work for him one day. until that day when my bloods are clear of this curse i will keep on pursuing a cure and sharing my research.

i am tired, stressed and i am so pleased to see tony reply, he did a better job of the references than i could. his approach of research based. and of course seeing a positive comment from tanstaffl.

your contribution adds value to this thread. my approach is simply trust my onc. of course if tanstafll had been negative on gcmaf on technical grounds i would have been worried. we have pros and cons of gcmaf. anyone interested at least has some reading in one post.

your concern, based on reading the site you reference shows the challenge of our searchings for a cure. its very hard work, and thats why the supportive team approach without big ego's is the way to go here, i am so pleased to see interest from tans, jeff and tony. I am happy to be the first on csn to try this, I say that with pride, and have no fear re my poor body. I am blessed not to be on chemo and have health and energy and an opportunity to heal naturally.

my role here is the guinea pig, i will leave the science to my friends. if it gcmaf works, well lets party, if it fails their is always something else to try while i have dollars and breathe, i will try. if i run out of dollars i will steal some tumeric or grow my own, or i'll grow it. i simply will not sit back week by week and have a shot of chemo and do nothing else. that is not my style, it maybe others choices, i respect them, but its not for me.

your care for me and your ideas are appreciated. even if i don't agree with the links comments you provided. some others might, so its worthwhile. we all got to roll our dice and make decisions. Its nice to share the roll of the dice with friends here, be it an alt roll, conventional roll or a combo. As long as we have fun and win. whatever winning means when you got crc.

hugs,
pete

herdizziness's picture
herdizziness
Posts: 3388
Joined: Apr 2010

of selling it, if it was curing AIDS and cancer, I'm pretty sure it would have been BIG BIG NEWS. Every where I looked it was CURING AIDS. Give me a break. My brother died from AIDS and I'm sick of these scam artists trying to get you to buy what their selling with the promise of a cure. Yes, I'm going to believe something CURES not only AIDS,but CANCER AND MS too, whoop whoop. Sorry, you can go spend all you want on it,throwing your money away, but nothing you can say or show will convince me. Everything I found on the internet talking how great it is, was from people PROMOTING the sales of it. And of course they warn you on their site, it's just because big pharma can't make money off of it is why one knows about it, except you the researcher that has finally found them and can cure yourself of cancer and aids and a few other diseases if you spend your hard earned money on it.
Pete, you are a scam artists dream.
From their own web site:
http://www.gcmaf.eu/info/index.php?option=com_content&view=category&layout=blog&id=20&Itemid=25
Winter Marie

manwithnoname
Posts: 390
Joined: Jun 2012

gcmaf.eu was registered 2 years ago.

Hardly ANY cancer patients are using this, Im only here coz I found Pete through Google, most of the interest is from ME/CFS patients and kids with autism and a few renegade HIV patients, why don't you look at some of those and how people are doing with it?

http://drbradstreet.org/

http://forums.phoenixrising.me/index.php?threads/gcmaf-for-xmrv-gc-protein-derived-macrophage-activating-factor-anyone-taking-it.4892/page-125#post-274376

http://forums.questioningaids.com/showthread.php?t=7588

If you google 'gcmaf cancer treatment' you will find this thread and not much else, it's not like thousands of poor victims have been conned.

This is cutting edge stuff (even after 20 years of research) kudos to Pete for testing it.

pete43lost_at_sea's picture
pete43lost_at_sea
Posts: 3915
Joined: Nov 2010

Dear friends,

So is CEA an outdated test ?, will nagalase be the new bio marker for colorectal in the future ? what does my one blood test level mean. Its exciting to think i could be the first poineer here to find something of immense value to the colorectal community or i have just been duped of $170 aud for the nagalase test.

but just imagine for a minute, a more accurate colorectal biomarker, it could change all clinical practice and guidelines overnight. the possibility is exciting. now if not nagalase, and at this point i hope it is the real deal. it will be another better test one day.

i dream of blood tests with better specificity, more accuracy to help make better clincial decisions, in tighter timeframes. to save more lives.

so i plan to do nagalase tests , side by side my cea. I will include all the results here.

should i even tell me onc, i know she will say the test is alt garbage, not proven and she cannot make clinical decisions using it. i know the evidence based answers to well already.

Now something deliberately controversial.

i so agree about hating the charletons who take our money. almost everyday in my personal survival quest i get advice that i have to rigorously question and assess against my knowledge base.

i often run the risk of being scammed or defrauded regarding my cancer treatments.

i am confident in my understanding and judgement for my situation alone. i make the best decisions i can, we all do. of course they are different decisions, we all have different paths in our healing journey.

we come together and share our longing for survival often our frustrations.

my vent earlier , that got me into more trouble again, was aimed at the charletons. you see for almost everyone here going down the tried and tested conventional path you are protected from the charletons to a large extent. except when the cancer centers had the fake chemo, that i alerted you guys to months ago. that was greed at its worst, even conventional medicine is not safe from charletons and scammers and how long did the fda take to give the warning.

Those who follow the alternative path, myself included, are exposed constatnly to the conartists, to buying over the net, to trusting references that maybe suspect. i have heard of some of my friends here being exploited and it makes my blood boil, i want revenge but i will not permit myself to explore the depth of rage i feel to those that exploit the weak.

one day if you are really up for the discussion, and i don't have time for it right now. are our current onc's negligent about not recommending exercise to vulnerable cancer patients. as a professiona they have waited years to make such a daring advice to patients. still they have not yet. so that is callous, negligent breach of trust in my books. I empathise with those loyal trusting cancer patients.

now consider the charletons that sell fake gcmaf or any other cancer scam, or come up with bogus studies.

whats worse the negligent onc who fails his duty of care or the charleton ?

my answer is the onc's are worse because exercise saves lives, its that simple. its as easy as a walk. how come the ACS is in a better position of advocacy than one of our most trusted professions.

the onc failure here effects thousands more patients than the charletons. my reasoning is probably because most cancers patients don't have funds left to scammed out of.

I raise the question of the failings of conventional oncology with respect to my case as an example.

Why did not my conventional onc ask about gcmaf and recommended the nagalase test ?

Why did my intergrative oncologist have to perform this function ?

this is all just my opinion but conventional oncology has to adapt faster, too many lives are being lost. maybe nagalase will be the tip of the iceberg, maybe not. But exercise and simple walking is, and thats enough to convict the entire profession on.

If nagalase is the real deal, I won't ask myself why its taken so long to be tested ? I may not like the answers and i won't think about where my health would be if I had started testing earlier and I will cry for many reasons.

i have a sense of my duty of care to me and my friends here, i think its far more advanced than that i see in most oncologists with regard cancer therapies regarding healthy diet, exercise and supplements.

those that seek out better ways than conventional, that seek to give themselves the best chance of life i appreciate and am grateful for, they are pushing the potential of cure. indirectly they are boosting my chances by sharing their experience.

this thread is about gcmaf, but it brings together the issues around alternative and conventional as well as the responsibility we have for our own health given the limitations of the health system i am being treated in. Is it not sensible to see the limitations of my system and workaround them ?

so i have a clear scan, but the words in the ct report "no changes found at this stage" bring home the fragile nature of my health and why i will be insisting on my gcmaf shot tomorrow.

i wonder why my cea is rising ? I will ask my onc next week for the bone scan and the liver mri with contrast called primovist. its the worlds most accurate way of defining liver mets according to my little scanning team at sydney xray.

i will also ask my colorectal surgeons to go and patch up my hernia and in the process have a poke around the liver and abdo to see if they can find something to cut out. I at least have to ask this question again, its been six months since i asked it. and this rising cea is a real bummer.

the best thing about having a rising cea over eight months and NO tumours found on the scans is i have had an amazing window to try almost every alternative cancer treatment in the top 10. For the record none of them have killed me, or sent me broke. i have great health and now enjoy raw broccoli.

hugs,
pete

manwithnoname
Posts: 390
Joined: Jun 2012

Some of you might have seen this vid, most won't, this is close to my heart and shows the battle of alternative ideas and conventional wisdom and the spirit of a man who won't give up.

Hope it gives some of you food for thought (and hope).

http://www.youtube.com/watch?v=K6JsCXjS8lg

Sundanceh's picture
Sundanceh
Posts: 4266
Joined: Jun 2009

has always talked about walking to help cancer...and he's said it more than once.

He mentioned it to me during chemo as well....to just walk 5-minutes even when sick on chemo.

Some doctors may or may not counsel on this...but as reasonably intelligent folks, we already know that exercise is beneficial to us with or without cancer.

Mine has always been real good to stay on me to walk and lose weight. He told me last time to get a few more pounds off...so he is taking care of business.

Phil64's picture
Phil64
Posts: 411
Joined: Apr 2012

he said eating healthy, exercising, at the vary least will help us fight the fight. He did say there is not clear evidence / research that supports a theory that a change in diet will help "cure" cancer. But he did say there is a lot of research that correlates an unhealthy diet / lack of exercise with getting cancer.

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pete43lost_at_sea
Posts: 3915
Joined: Nov 2010

i am glad you have a great onc.

my rantings may seem extreme on rereading, but i think its reasonable to step back and look at what we need as a colorectal community to achieve the best cure rates and quality of life.

maybe we can setup the colorectal cancer patients union. after all the onc belongs to associations, as a community we have huge power that we don't use. i guess it starts with an idea and a discussion.

and discussion well, my elevated cea , i hate saying possible recurrance has dragged me into this world of alternatives.

as i said its nice your onc is caring for you well.

hugs,
pete

herdizziness's picture
herdizziness
Posts: 3388
Joined: Apr 2010

Pete, in all honesty I think it's your body screaming at you to quit some of the strange things you are doing to your body, maybe the rising CEA is trying to tell you that your body isn't happy with some of the stuff you are doing to it, if it ISN'T cancer as your scans tell you, then it must be something? Like you are abusing your body with so many alternative stuff that's it's trying to tell you knock it off? Just a thought to explain rising CEA, it's rising for a reason, maybe you should try backing off of some of what you are doing to your body.
I like you Pete, but you are starting to really push some things that aren't proven, that give false hopes and then I feel like I must step in when you start to get pushy pushy with the scams and talk with a voice of reason.
Pete stick with the healthy stuff, the foods, the walking, your meditation, etc., BUT please try and stop using the stuff that's been advertised for over 20 years as the cure all for all that ails the world.
Your anti-oncologist rants and fear of cancer I think really suggest that perhaps you should maybe sit down and talk with a professional about your feelings and fears, I truly think it would help you from running with so much fear.
Concerned,
Winter Marie

manwithnoname
Posts: 390
Joined: Jun 2012

First of all this has NOT been advertised as a 'cure' for cancer for over 20 years, that is completely false or show me otherwise.

Second, Im going to talk with a 'voice of reason' how is Gc-MAF a scam?, all I have found are peer reviewed scientific papers that ALL say more research is needed, NONE are saying it's bull, ALL find it kills cancer.

Third, maybe if you were given a few months to live you would be willing to take a medicine that has low or no side affects and might prolong your life or EVEN cure you for a few hundred dollars.

herdizziness's picture
herdizziness
Posts: 3388
Joined: Apr 2010

Your third part: I was given a few months to live myself, I didn't go running over to something that was unproven yet something that swore it would CURE me for a few hundred bucks, wasting what was left of my time on taking money from my family and throwing it essentially down a toilet, I admit instead I did conventional therapy and miracle of miracles I'm still here, two and half years later, go figure. Especially something that claims to CURE cancer, AIDS, MS and a few other things. Let's be sensible, really, a CURE-ALL one size fits all thing? Really?
Do you really think if my brother, who died of complications of AIDS had taken GmMAF would be alive today? NO, he wouldn't, no more then GmMAF cures cancer. Nuff said.
Winter Marie

manwithnoname
Posts: 390
Joined: Jun 2012

Im talking about when ALL conventional therapy has failed (like my little boys case) AGAIN no one here ACCEPT YOU is saying this is a cancer cure, please read everything I posted again.
As for your brother, I have no idea, and neither do you.

herdizziness's picture
herdizziness
Posts: 3388
Joined: Apr 2010

Yes I do, have an idea, absolutely that GcMAF would have made NO difference in his dying from complication of AIDS NO MATTER what GcMAF says about it, it's something they are selling to the vulnerable and desperate. AND GcMAF claims it's a cancer cure, you might not, but they do!!
This is just ONE of their claims from THEIR site:
"injection of minute amounts of Gc-MAF, just 100 nanograms (billionths of a gram), activates macrophages and allows the immune system to pursue cancer cells with vigor, sufficient to produce total long-term cures in humans."
Winter Marie

manwithnoname
Posts: 390
Joined: Jun 2012

"This is just ONE of their claims from THEIR site:
"injection of minute amounts of Gc-MAF, just 100 nanograms (billionths of a gram), activates macrophages and allows the immune system to pursue cancer cells with vigor, sufficient to produce total long-term cures in humans."

That is from an article they have on their site that they took from the Internet, the SAME article that the cancer charity used which was written by people NOT AFFILIATED with Gcmaf.eu, granted the writers made wild claims for a 'cure' but it was just their opinion.

HERE IS WHAT GCMAF.EU SAY on their home page;

"Chronic herpes/acne takes about six weeks. Autism (85% respond), and those with CFS or HIV, (15% respond, most appear to have the VDR gene blocked) and stage 1to 2 cancer, (80% respond) take about 24 weeks. Late stage cancer, perhaps 20% responders, takes a year to 18 months. The more minor the disease, the easier it is for GcMAF and your immune system to eradicate. GcMAF needs normal levels of vitamin D to function strongly. But even in low responders, GcMAF usually appears to stop the advance of cancer."

NOT ONE WORD ABOUT 'CURING' AIDS, CANCER OR ANYTHING ELSE.

Did you read ANY of the papers written about this or is this a knee jerk reaction?

manwithnoname
Posts: 390
Joined: Jun 2012

I posted before that I wasn't 100% on this enzyme being a reliable marker of tumour progression or cancer state.

These 2 studies pushed me over;

http://www.ncbi.nlm.nih.gov/pubmed/19394758
http://www.ncbi.nlm.nih.gov/pubmed/10940510

evidence is starting to mount up (slowly)

smokeyjoe
Posts: 1428
Joined: Feb 2011

Interesting.....it's all soooo technical....

pete43lost_at_sea's picture
pete43lost_at_sea
Posts: 3915
Joined: Nov 2010

just a very quick update, i appreciate your interest in gcmaf and your care for me and of each other.

i will read tony links soon, as i am being directed to take gcmaf by my integrative onc, i will discuss with him me scan result next tuesday arvo, i have the last appointment, this will be a two hour consult, discussing all the research papers at the previous weekends alt cancer conference.

simply screeew cancer, it will never beat me while i have breathe, all my decisions are guided by medical professionals and confirmed by my research, the biggies i share here on csn. I have not made a fearful decision in a long long time, i thought you knew me better than that. i was diving and went head to head with an angry bullshark, my friends thought i was dead. i just said simple baby and took a great headshot. he turn at the last minute. no fear just exhilaration.

fear is what i see in schools of fish when the sharks are attacking, the smart fish swim away from the pack. the sharks only attack the schools. i am the alternative cancer patient swimming away on my own path from a group i see as dominated by fear. just my opinion.

i have faith in my doctors, what i have studied so makes me feel positive about gcmaf/nagalase testing.

this stuff is very technical, so smokey and all, just read and learn and be amazed at the research and ideas of other brilliant minds. you will know more about this than your onc, then educate them. together we may start a revolution that saves lives, worst you have read about something that hopeful got the blood flowing between a few brain cells.

i will update this after my consult next week and i get my second gcmaf shot. as i see it, not having the gcmaf is a risk i would like to avoid. its only money and we cannot take it with us, if its a con then i will haunt them along time into the future.

health and love to all.

hugs,
pete

manwithnoname
Posts: 390
Joined: Jun 2012

Pete that is an interesting protocol you devised, totally agree with the SFN, trying myself to find a good source for it here, VERY interested in the book.
Looks like you are going the alkaline path, Im still trying to find more info on that route, it's a minefield...

We got a visit from an oncologist the other day, (sometimes people go out of there way when it concerns a child) a very interesting Dr. who now works in palliative care for terminal patients (he did say though some of his terminal patients are refusing to die) ;-)
he is very enthusiastic about this; http://www.natmedtalk.com/f27/4491-mms-dmso-cancer-protocol.html
The Dr. is using this and finds it is working.

also says we can use a cream instead of oral, we are starting this next week, will update.

We are also starting virus treatment next week, remembered some trials had be done with colorectal, have a read; http://jnci.oxfordjournals.org/content/91/20/1708.full

It's an old article and much more work has been done with this since 99, this treatment is very safe...

pete43lost_at_sea's picture
pete43lost_at_sea
Posts: 3915
Joined: Nov 2010

Pm me your email, I will send you the sfn Book that will give hope.
To Get the 200 DNA repair genes activated, at least read and we can discuss, it's just Gold.

Hugs,
Pete

Ps my protocol for colorectal reflects heaps of care from lots of medical professionals and my own research.
Thats the most positive comment about my protocol I have had said here, most think my protocol stupid, strange that what I would feel I did not do it, now I have educated myself. Without my protocol I would more than the 20 mg melatonin I take to get a good night's sleep.

Minnesotagirl
Posts: 141
Joined: Sep 2011

Hey Pete,

Just wanted to tell you that I admire your spunk! I also admire your tenacity to think outside the box. Keep the information coming but please not at the cost of your own health.

"Minnie"

manwithnoname
Posts: 390
Joined: Jun 2012

Hi Pete, still can't find the PM button...heres my mail maseratimad@gmaildotcom (replace dot with. )

can't wait 4 the book.

Pete, as for criticism it's part of the course EVERYBODY has an opinion and will tell you exactly how and what you should be doing, I admire you for using your brain and intuition and believing in what you are doing.

For 3 years now I have spent most of my time (12+ hours per day) reading and reading, trying to find a solution, the task is huge, to cure a highly malignant very rare brain tumour, in my journey I have found a lot of hope and a lot of B.S. the path now is clear ONLY the immune system 'CURES' cancer, everything else is temporary or just tackling symptoms.

Of course I don't except everyone to agree, I believe I have found the cause as well, Polyoma viruses and parasites, they are proven or implicated in almost every cancer. I can discuss this more (and the proof) if there is any interest here.

pete43lost_at_sea's picture
pete43lost_at_sea
Posts: 3915
Joined: Nov 2010

a families whose son was given up for dead here, went to germany for state of the art brain tumour therapy. i don't have details, but heard the story, they donated a $250,000 hyperthermia machine to the niim clinic melbourne, its the best in the country.

just another avenue, to keep in the back of your mind.

its strange the viruses and parasite cause of cancer i learn towards also. strange though i am focused more on treatments of the disease now than the intital root cause.

no more mould and toxins in my life now , anyway.

i agree about the immune system also, many don't, i don't care. its survival of the smartest, not just the fitest.

my new law of survival, survival of the fit and smart. if folks want to sit back and watch tv and eat pizza they can go for it, i on the other hand am off to meditate and relax.

i will give my kids a massage asleep tonight, they know i love them dearly. don't forget about the healing power of love. its sounds odd as we talk about science and gcmaf but our brains are amazingly complex and powerful and their is so much we don't understand.

but what little i understand i am in awe of.........

hugs,
pete

ps i am glad you like the book,
http://petertrayhurn.blogspot.com.au/search?q=glisodin

i use get glisodin from enduracell, an aussie company i trust and who provides good service and care

manwithnoname
Posts: 390
Joined: Jun 2012

" strange though i am focused more on treatments of the disease now than the intital root cause"

Virtually everyone has these viruses and parasites in their system, the question is how they manage to gain an edge and become oncomodulating, once they do they are hard to kill, and also hard to find.

A weak immune system due to stress, lifestyle, toxins... who knows?

First thing is to remove the tumour mass, (surgery) then work on the microscopic remains (Chemo), then attack the cause and make the cells normal again through re-differentiation. (nutrition, anti-virals)

This nutrigenomics stuff has a role in the re-differentiation.

Here's a list of onco parasites and viruses, scroll down for colorectal;

http://onlinelibrary.wiley.com/doi/10.1111/j.1365-2249.2010.04127.x/full

pete43lost_at_sea's picture
pete43lost_at_sea
Posts: 3915
Joined: Nov 2010

the excerpt below got my attention.

my rising cea started 21 nov 11, now on 1 sep 11 i got maleria on a scuba diving holiday.
i always suspected an inflamation based link, my onc was also curious.

whatever the cause that get cancer primary or secondary growing beyond the initial stages is too late for detectable cancers by blood markers, or imaging.

The theory does has implications for all those stage 3's wanting to avoid recurrence, it would seem reasonable to avoid or minimise exposure to inflamatory triggers, which is a whole other area of discussion not relevant to gcmaf which is looking at fixing the cancer problem after the genie has escaped the bottle so to speak.

its 2.30am been unable to sleep, after reading the article i am feeling tired again. its a good read and thanks for sharing the link here. so the article is at least more powerful than the 20mg melatonnin i am on as the article is making me sleepy and yawning while with the melatonnion i was laying in bed restless just blowing off the bed covers with gas. the joys of dysfunctional gi tracks are my specialty.

This argument challenges the mutational dysregulation paradigm because it assigns a primary causal role to infection in many and perhaps most cancers. This primary causal role is not through the generation of mutation, but rather through the compromising of the barriers to cancer. The conclusion, however, does not rule out a role for infection-induced inflammation. Reactive intermediates associated with inflammation could be an important cause of the mutations that eventually transform cell lineages from a precancerous state to cancerous. The important point is that the available evidence confirms a direct compromising of the barriers to cancer but does not yet confirm a major contribution by inflammation-induced mutations.

tanstaafl's picture
tanstaafl
Posts: 936
Joined: Oct 2010

I would think twice and three times about not using MMS. First chlorite is incompatible with other alternatives that are antioxidants, and that covers a lot of territory. Second, DMSO is a supersolvent that needs to handled with knowledge and great care. Third, (salts of) chlorine dioxide generation and use has a snakey history where even industrial chemists wound up with egg on their face and shaking their heads over optimistic claims for industrial uses, much less human use.

MSM (methyl sulfonyl methane, is not MMS mistyped!) is a common form of oxidized DMSO that most people use now with cancer and arthritis instead of DMSO. I would look for less dramatic chemicals than MMS-DMSO for personal uses or alt meds.

manwithnoname
Posts: 390
Joined: Jun 2012

TBH I would not of touched this stuff with a barge pole!!!! I did come across this a few years ago and dismissed it.

HOWEVER the oncologist who recommended this has a 30+ year working experience in the cancer field he is a totally legit Dr. who has practised in the best hospitals here and UNBELIEVABLY he has a very open mind.

I take his personal experience on using this with terminal patients as something I can't dismiss given our situation.

pete43lost_at_sea's picture
pete43lost_at_sea
Posts: 3915
Joined: Nov 2010

I have more than touched it, my daughter likes chemistry, she makes it for me or used to while i was trying it. mms is on hold while we play gcmaf.

Lets do a separate post about mms , i don't want our gcmaf discussion to get side tracked.
i understand Tanstaflls reservations, i had mine, i was put onto it by a different alternative gp who i have the utmost faith in. i am having a well earned mms break, effectively since stopping mms my cea markers have increased. but i also stopped iv vit c and went hardcore vegan and natural. so i do try and cut back on these alt's i know they impact my liver.

my strategy was to completely heal my gut, complete heavy metal chelation and then reintroduce mms when biomarkers excellent and heavy metals cleared. they are still capable of blocking our immune systems and folfox can poison colorectals. it has for me.

i have mms here ready to go. i never new its was dmso. how cool i have tried another alter therapy without even realising it.

i am still alive, unless the program i setup to keep my posts going is typing this and i am just a spirit in the sky.

hugs,
pete

manwithnoname
Posts: 390
Joined: Jun 2012

Would def. appreciate if you post what you know about DMSO/MMS, since getting the Proteomic info Im anxious to start that protocol, not sure how everything will fit together.

The Proteomic test showed his tumour is very 'stem cell like' found out Metformin kills CSC too, also this: http://medicalxpress.com/news/2012-05-thioridazine-cancer-stem-cells-human.html

We have been giving Metformin for a while now, scary stuff all this experimenting. Trying to keep it all very mild.

janderson1964
Posts: 1503
Joined: Oct 2011

Thank you for being the guinea pig for gcmaf. I am definately going to try it if i reccur.

janderson1964
Posts: 1503
Joined: Oct 2011

Pete wher are you of your doc getting gcmaf from. Is it that european company. I believe out of Belgium.

pete43lost_at_sea's picture
pete43lost_at_sea
Posts: 3915
Joined: Nov 2010

it still was a great consult, got an hours meditation in while waitng.

it was a bit all over the place the consult today.
i asked for the supplier for tony's son, and it was not given. i did not push.
i mentioned the interest in this post.
he will discuss my nagalase gcmaf use and cea results on a conference call this friday.

we discussed covering the worst case, in case cea shows a slow growing tumour. our focus is gut and liver health.

i mentioned probex probiotic specifically for ibs patients has been helpful with my midnight poo leakage problem. i just realised this problem has lined up with my rising cea.
the leakage has been getting much better.

no gcmaf for me
cea rise is gut and liver inflamation
redo cea in 6 weeks, after 2 weeks gut drops, 2 weeks vsla 3 and glutagenics and then 2 weeks liver detox. and some more serious liver tests.

planning to get the chelation going asap, as soon as zinc at 18 in the 24 urine test and all other minerals good.

thats about all.

we went over my diet, which is in book "the cancer prevention diet" page 252 for colorectal. he photocopied the 20 pages, i am doing most of it. i have ordered the book.

hugs,
pete

ps so i did some more digging and put down a few links on my blog page with regard to rising cea and an odd assortment of search results from other boards, journals etc.
its possible the rising cea is something else, this is an area i feel i have to explore more fully after eight months of waiting for a tumour to appear, it may never, it could be some liver issue, some pancreatic issue. i know my lipase is low. i know maleria damages the liver, so maybe just maybe i have to take a more open focus.
http://petertrayhurn.blogspot.com.au/2012/06/rising-cea-research.html
now some of links i liked alot, very technical

pps its over eight months since my cea started rising, i have done more anti cancer, health research than imaginable. even if the cea rise is not cancer all the work has been fantastic, i have learned so much and tired so many amazing things and i am still here. seeing onc tomorrow.

manwithnoname
Posts: 390
Joined: Jun 2012

Think I have found a couple of descent sources.
I gather you are going to chelate your copper and Iron, or is it heavy metals?
Whatever the script, good luck.

pete43lost_at_sea's picture
pete43lost_at_sea
Posts: 3915
Joined: Nov 2010

PB, hg, pl and AR alas.
Given our toxic world softcover Chelation cilantro, Brown rice powder and mcp have been constant since Feb.
Want to start hardcore Chelation, the time is coming.

I will likely stop iv c while chelating.

So onc thinks cea rise vc recurrence, alt doc 1 as well.
Alt doc 2 liver or pancreatic, Hilary issues all possible causes. Got to love the complexity of our biology and have faith in nature's healing.

Let us know how your son is travelling, I will tell my daughter his story, even kids have to learn to value the gift of life, of health.

I am typing and a far infrared sauna after a massive workout and then off to iv c.

Hugs,
Pete

Lovekitties's picture
Lovekitties
Posts: 2884
Joined: Jan 2010

Can you please help those of us who are not as schooled in all this with your abbreviations?

PB = Lead
hg = Mercury
pl = ?
AR = argon?

Also I didn't quite understand your reference to "cea rise vc recurrance"...are you saying that the onc and alt doc 1 think cea rise is or is not related to recurrance?

Also does alt doc 2 think it is related to liver or pancreatic 'issues' or mets?

What are "Hilary issues"? I tried to look it up but could not get past all the references to "Hilary Clinton"...lol.

Sorry to make you work extra hard at explaining but no chemistry in school and not much human biology here either.

Thanks in advance for explaining,

Marie who loves kitties

pete43lost_at_sea's picture
pete43lost_at_sea
Posts: 3915
Joined: Nov 2010

hi marie and all my friends here,

thanks for asking for clarification, sorry for the abbreviations.

i typed tony's answer on my smart phone in the sauna. infrared not steam ok.
hilary should have been bilary. for bile duct issues. in my digging for non cancer cea rises that is one of many possible causes.

pl was for platinum
ar should have been as for arsenic. now even though the test below
https://docs.google.com/document/d/1vfGjbuo3IWV6pNnSSKbnHIskHfJMeIJqjLrLK6T9zTw/edit
showed low arsenic a subsequent test showed very high.
these are the heavy metal tests from doctors data i did a few months ago.

the link below was of interest, its one of the metals in folfox as i understand.
http://www.webelements.com/platinum/

my alt doc who gave gcmaf now hopes cea is just inflamation, he is putting more weight on the nagalase result. that his his assessment this week, but the raised cea ws his reason for gcmaf in the first place.

my other key alt doc who dishes out vit c really suspects crc and is concerned, as all the alt therapies have not stopped the rise, but may have slowed it.

now i saw onc today to discuss clear ct result a few days ago.

basically she is really concerned over the latest rise, despite clear ct. she says many small mets, thoughtout the liver could explain my results. now i already new this, i raised it months ago but it was not picked up. after a good pock around, good physical examination. she notes i am "a symptomatic" and in good health, no issues whatsoever except my fecal incontinence which she says could be related to diet and post op, post radio, post chemo.

i have been a bit gungho when it comes to my rear i think. well we live and learn.

my onc has ordered an mri with primost contrast on wednesday and a followup consult on monday week to discuss the results, she is expecting mets to be found and talked of getting my port back in and of a her preferred liver surgeon who would do a one day laprascopic dig around the liver to see if things are operable or not. but thats all speculation. she also confirmed me last chemo was april 2011 and that neuorpathy is all but gone, oh great, i think to myself.

the speculation that leaves me feeling vulnerable and melancoly. by tomorrow is should be back juicing and meditating. my very slow tumour growth if thats indeed what my situation is , well its just what it is. not throwing in the towel just yet. but i am feeling very mortal tonight.

got to scratch my sons back and go to sleep, the consult was only 15 minutes but very very draining. called wife and my confidant about the conventional plan.

even my onc smiled when she said its going to be better to find out where we stand, and i nodded and smiled. i am glad to have access to the mri with contrast. here's hoping that we all just enjoy tomorrow. i am not rushing through my days. i feel a little nervous that my alternative experimentation window maybe closing.

i know we all know this, but i just have to type it that "crc is a formidable foe"

hugs,
pete

ps i did sneak out to yoga tonight, it was a good workout!
pps and yes my enthusiasm for gcmaf maybe like all my alternative ( my windmills ) and as craig says time will tell for each of us our stories.
ppps getting a port back in is bitter sweet. at least if i decide to through with conventional treatment my alt docs cannot say i have not given them the most faithful and dedicated test patient.

janderson1964
Posts: 1503
Joined: Oct 2011

Cea was never a good marker for me. I ne er had a rise leading up to my 2 recurrences in the liver. Try not to panic over this. Dont you think you should trust the scans and wait and see.

You said you stopped the gcmaf. I read several times that you have to do it for a least a year for advanced cancers.

Dont get a new port just on speculation. Then you really feel locked in. I cried when i had my port put back in this year.

I might have something in my lungs. Doc said there was a shadow on my last scan. He said he 99% sure it wasnt cancer. I have a scan in a week but made up my mind that i am stopping treatment after 12 rounds as long as there is no significant changes. Then i will yake the wait and see approach like craig is doing. I will also see my surgeon the day after i see my onc to discuss options if it does become an issue.

Finally i am getting more serious about persuing gcmaf.

Jeff

pete43lost_at_sea's picture
pete43lost_at_sea
Posts: 3915
Joined: Nov 2010

not panicing but my conventional onc will put the thumb screws into me if i go back on chemo.

i have gone a bit wild in my alternatives and diet and exercise.

i probably should not be doing deadlifts with this big hernia eve.

conventional medicine just is so boting and unexciting, and it leaves me with such little hope. its really medicine like join the dots.

i won't get the port in, unless i have to, but at least i can use it for vit c and save more poor arm veins. always a brightside in these decisions.

i hope your lungs are clear. so next week will have some interesting results.

we are alive, for me that all that matters. i see the results as interesting but imperfect an in a sense i will think about contingencies but thats all.

wait and see seems wise. i guess we can give our own biologies a chance to put their best foot forward.

i am still keen on gcmaf, and i am only guessing at gcmaf alt doc reluctance to continue just at the moment. he is saying my cea rise is bogus, so he has great faith nagalase. i have faith but also have not had a satisfactory explanation of my cea rising thats not related to crc.

its likely my onc's experience with the cea marker is based on seeing lots of cea rising, very very few false positives. which is different to false negatives.

I will cry also at the time the port goes in, but i have a few strategies to go with.

hugs,
pete

manwithnoname
Posts: 390
Joined: Jun 2012

Hi Pete, I have faith that the nagalase marker is more accurate, still check out zoledronic acid,http://www.ncbi.nlm.nih.gov/pubmed/19400555

Take care, Tony

pete43lost_at_sea's picture
pete43lost_at_sea
Posts: 3915
Joined: Nov 2010

thanks tony,

an interesting study, and lots of hope for us pioneers.
but who wants to be a pioneer, not me, but if i have to, i have to.

picking strategies gives me a headache, but i like the science. my alt gcmaf actually talked about harvesting some granulocytes and growing them and reinjecting them into me. that was in preference to gcmaf. he would not elaborate and he said he would discuss my gcmaf and cea issue on a conference call. so i will follow him up next week.

on the brightside my wheatgrass is ready for harvest and i am going to have a double shot.
its friday night here.! ha! ha!

i liked the last sentence of the abstract.
"The use of zoledronate-activated killer (ZAK) cells should be encouraged in possible adoptive immunotherapy trials for patients with incurable cancer."

we all went out to see the movie "the three stooges" me and the kids and a niece. a nice way to celebrate the beginning of the school holidays. you and your son may like it. i have not laughed so much in a long time. just some off cancer topic.

it takes alot to get me down and keep me down.

hugs,
pete

manwithnoname
Posts: 390
Joined: Jun 2012

Think he would like em, will try it out, today he started with NDV, he got a fever few hours later, so we are happy.... The zoledronate was being talked about in recurrent pediatric brain tumours, that's how I found it.

I have been searching stuff that's good against mets. found a few interesting things, don't really know too much about the pathways for CRC though.

L8tr

pete43lost_at_sea's picture
pete43lost_at_sea
Posts: 3915
Joined: Nov 2010

but isn't everyday in our lives supposed to be the best, if we having growing awareness and peace of mind well it is. so today was the best day of my life so far!

so i started with a great upper body torcher session with guy and another infared sauna.

i raced to the airport to return the hire care. i must have had the little car accident 2 weeks. i was running late to return the and was dreading paying another day. i said its just money, chill pete. so the whole airport carpark is closed, so is hertz. a bomb scare at sydney airport at the time i am supposed to return my vehicle. so i keep on driving and return the car to the hertz office next to the hospital.

so in i go for the mri with primovist to show up any liver issues. i suspect they found some stuff becuase they spent a good hour doing me, when they said 25 minutes. alas thats just a guess. the ear plugs, the headphones, the new contrast into the wrist. the $350 i had to pay for it. not covered but onc wanted this test to see if any mets show up. i got the cd of the images, but will not look at it until its reported.

i had my alternative intergrative onc who was a surgeon ( gcmaf doc ) was copied on the mri report, he will call me tomorrow as soon as he gets it faxed to him. then we can discuss the alt strategy.

a clean mri will be a good sign for the nagalase result.

an mri showing small liver mets well implies some question over the value of nagalase or at least its limitations.

time will tell on this question.

after the mri, i went to the gmfac doctors office and spoke with amazing nutritionist/naturopath sarah for at least an hour we went over heaps. current issues, current test results, changes in diet. having lots of experience she explained many of the tests in greater depth then i have had explained before. so my iga, fatty acids, stools are all good.

key suggestion is i am adding berberine to tackle my persistant thrush. in our discussions i explained thrush supposedly drives down zinc, lots of conditions drive down zinc and mine is low again.

as my gcmaf alt doc was overworked today i left his office happy to have discussed and reviewed diet and supplements and where is was at.

my fecal incontinence at night has been improving ( ie two nights with no accidents, big imporvement from 3 accidents per night ) since the heavy duty probiotics and adding 100gm animal protein to my diet to slow down digestion as well as dropping my homemade breakfast cereal. its jsut so good to have a good nights sleep.

now its to early to optimistic but i hope i fix the incontinence issue and can cut back my meat. but clearly for me, what food that comes in had a big effect.

what sarah and i discussed in the hour was so detailed, especially the results, the relationship to my diet, strategies re health. they are pushing the macrobiotic diet and we went over changes i could make to accomodate it while being vegan. well at least clearly the pluses and the minuses with reference to me.

just a great day, lovelly caring nurses and friends. that includes you here on csn. time will tell if the cd i hold confirms tumours in the liver, as a sign of how little power these test have over me i will leave it alone and go to sleep and dream of scuba diving.

i just finsihed reading "dying to be me" by anita moorjani, i loved it.
I will update this post with the results, because for me this mri may show the usefulness of the nagalase marker and then the gcmaf strategy. i am doing cea on monday, its been a month.

hugs,
pete

manwithnoname
Posts: 390
Joined: Jun 2012

Really hope that comes back clean, found this and thought you would enjoy; http://www.bbc.co.uk/radio/player/b013xsm1

This gives a great overview on why we don't get treatments that might be fantastic, and the power the Pharma. industry has over our health.

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