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

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Comments

  • pete43lost_at_sea
    pete43lost_at_sea Member Posts: 3,900
    Sundanceh said:

    My Onc...
    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.

    thanks craig for sharing this
    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
  • pete43lost_at_sea
    pete43lost_at_sea Member Posts: 3,900

    MMS= miracle mineral supplements
    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.

    Tony I have tried MMS for 4 months
    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
  • pete43lost_at_sea
    pete43lost_at_sea Member Posts: 3,900

    Email
    Hi Pete, still can't find the PM button...heres my mail [email protected] (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.

    state of the art brain tumour surgery in germany
    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
  • janderson1964
    janderson1964 Member Posts: 2,215

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

    Pete wher are you of your
    Pete wher are you of your doc getting gcmaf from. Is it that european company. I believe out of Belgium.
  • manwithnoname
    manwithnoname Member Posts: 402

    state of the art brain tumour surgery in germany
    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

    Don't worry
    " 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
  • manwithnoname
    manwithnoname Member Posts: 402

    Tony I have tried MMS for 4 months
    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

    New thread
    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.
  • pete43lost_at_sea
    pete43lost_at_sea Member Posts: 3,900

    Don't worry
    " 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

    tony interesting read, its the jc virus after all
    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.
  • pete43lost_at_sea
    pete43lost_at_sea Member Posts: 3,900
    had consult with alt doc who supplied gcmaf
    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
    manwithnoname Member Posts: 402

    had consult with alt doc who supplied gcmaf
    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.

    No worries Pete
    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
    pete43lost_at_sea Member Posts: 3,900

    No worries Pete
    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.

    thanks tony
    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
    Lovekitties Member Posts: 3,364 Member

    thanks tony
    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

    Dear Pete
    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
    pete43lost_at_sea Member Posts: 3,900

    Dear Pete
    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

    sorry marie and all
    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
    janderson1964 Member Posts: 2,215

    sorry marie and all
    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.

    Cea was never a good marker
    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
  • manwithnoname
    manwithnoname Member Posts: 402

    sorry marie and all
    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.

    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
    pete43lost_at_sea Member Posts: 3,900

    Cea was never a good marker
    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

    thanks jeff, heaps
    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
  • pete43lost_at_sea
    pete43lost_at_sea Member Posts: 3,900

    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

    tony good abstract, thanks
    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
    manwithnoname Member Posts: 402

    tony good abstract, thanks
    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

    Stooges...
    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
    pete43lost_at_sea Member Posts: 3,900
    a real big day in some ways!
    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
    manwithnoname Member Posts: 402

    a real big day in some ways!
    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

    Good luck
    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.
  • pete43lost_at_sea
    pete43lost_at_sea Member Posts: 3,900

    Good luck
    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.

    thanks tony
    listening right now, not surprising.

    clear scan.

    http://petertrayhurn.blogspot.com.au/2012/07/ken-sesel-senior-radiologist.html

    i got the result while i was cooking tea for my wifes birthday dinner. the kids and i baked an organic cake and chocolate mouse.

    hugs,
    pete