Supplements

renw
renw Member Posts: 282 Member
in Colorectal Cancer #1
My order of phospholipids arrived today. Another $900 well spent (or wasted as some would say), on a 2 month supply. Something new to add to my ever growing supplement list.

This is a good time to take stock of my supplement regime, as it is getting out of hand. I have become a victim of my own research it seems and my desire to throw everything possible at my little mutants has led me to this: ..... more on my blog: mcrc4.com

I would be very interested in learning what exotic supplement others are on like genistein, graviol, ahcc, phospholipids, beta glucans etc.

Comments

  • manwithnoname
    manwithnoname Member Posts: 402
    #2
    using

    MGN-3 don't think it's been mentioned here, Maitake D-fraction, DCA, Aloe alberascans, tincture of benzoylmethylecgonine.

    Think Pete has used one or two supplements as well.

  • pete43lost_at_sea
    pete43lost_at_sea Member Posts: 3,900 Member
    #3
    its more like 3

    hundred that is.

    go for it ren,

    they won't kill, but they may break the bank, i had the best consult for two hours with cindy, we talked tktl1, coy, and compared immune profiles.

    the thymus worked, in 8 weeks i have improved, modulated a few components of my immune system.

    tomorrow a five hour drive to munich to see ursula jacob, the founder of hallwang and its science. we might have lunch. i am in with the best doctors in germany.

    i am blessed, but really nervous, my dearest lung cancer friend passed away today in sydney, he was my age with a wife and daughter. cancer sux.

    at least my friend andrew is at peace. we did a vegan healing retreat, the gawler one 16 months ago. i was privileged to know him, i am as focused as ever now, no room for complacency. did you hear that ren, 

    my suggestion re supplements is to have a core, then depending on theraputic goals, add some on or off at monthly or weekly intervals. an excellent diet is better than the supplements. except the nano co q10 is pretty hard to beat.

    hugs,

    pete

  • coloCan
    coloCan Member Posts: 1,944 Member
    #4
    pete43lost_at_sea said:

    its more like 3

    hundred that is.

    go for it ren,

    they won't kill, but they may break the bank, i had the best consult for two hours with cindy, we talked tktl1, coy, and compared immune profiles.

    the thymus worked, in 8 weeks i have improved, modulated a few components of my immune system.

    tomorrow a five hour drive to munich to see ursula jacob, the founder of hallwang and its science. we might have lunch. i am in with the best doctors in germany.

    i am blessed, but really nervous, my dearest lung cancer friend passed away today in sydney, he was my age with a wife and daughter. cancer sux.

    at least my friend andrew is at peace. we did a vegan healing retreat, the gawler one 16 months ago. i was privileged to know him, i am as focused as ever now, no room for complacency. did you hear that ren, 

    my suggestion re supplements is to have a core, then depending on theraputic goals, add some on or off at monthly or weekly intervals. an excellent diet is better than the supplements. except the nano co q10 is pretty hard to beat.

    hugs,

    pete

    Grape seed extract has recently rec'd good press for

    advanced CRC

    www.medicalnewstoday.com/articles/255182.php

     

     

  • tanstaafl
    tanstaafl Member Posts: 1,313 Member
    #5
    $$ rule

    I am a big believer in generics, *discount* mail order "on sale". sometimes Sam's/Costco, and bulk sources, rather than brand names.  

    $900 ! Which phospholipids?  We've been using inexpensive lecithin off and on.  Supplements maybe $300-$400 a month total.  

     

  • renw
    renw Member Posts: 282 Member
    #6
    tanstaafl said:

    $$ rule

    I am a big believer in generics, *discount* mail order "on sale". sometimes Sam's/Costco, and bulk sources, rather than brand names.  

    $900 ! Which phospholipids?  We've been using inexpensive lecithin off and on.  Supplements maybe $300-$400 a month total.  

     

    The phospholipid is

    The phospholipid is 1-0-alkyl-2-acyl-sn-glycero-3-phospho-(N-acyl) ethanolamine or (PNAE) for short.
    more info here: http://www.ovosan.ru/eng/text.html

    I had a friend in the czech republic post it to me. Its available in most pharmacies there. The russian site above delivers world wide I believe.

  • Phil64
    Phil64 Member Posts: 838 Member
    #7
    pete43lost_at_sea said:

    its more like 3

    hundred that is.

    go for it ren,

    they won't kill, but they may break the bank, i had the best consult for two hours with cindy, we talked tktl1, coy, and compared immune profiles.

    the thymus worked, in 8 weeks i have improved, modulated a few components of my immune system.

    tomorrow a five hour drive to munich to see ursula jacob, the founder of hallwang and its science. we might have lunch. i am in with the best doctors in germany.

    i am blessed, but really nervous, my dearest lung cancer friend passed away today in sydney, he was my age with a wife and daughter. cancer sux.

    at least my friend andrew is at peace. we did a vegan healing retreat, the gawler one 16 months ago. i was privileged to know him, i am as focused as ever now, no room for complacency. did you hear that ren, 

    my suggestion re supplements is to have a core, then depending on theraputic goals, add some on or off at monthly or weekly intervals. an excellent diet is better than the supplements. except the nano co q10 is pretty hard to beat.

    hugs,

    pete

    Peat, is there a web site or place us supplement novices can go to learn about supplements? And if available, one tailored for crc patients would be nice. 

    okay, I get the feeling I'm asking for cliff notes for a 1000 page novel??? 

  • Fucc
    Fucc Member Posts: 92 Member
    #8
    Phil64 said:

    Peat, is there a web site or place us supplement novices can go to learn about supplements? And if available, one tailored for crc patients would be nice. 

    okay, I get the feeling I'm asking for cliff notes for a 1000 page novel??? 

    A good place to start, which
    A good place to start, which is also in line with the research I have done and my natriopathics recommendation is the life extension website. There is a pretty comprehensive explanation and details about supplements that have been found to work for colon cancer along with the dosage. Life Extension also sells vitamins and supplements. My understanding is that they are of decent quality.
  • herdizziness
    herdizziness Member Posts: 3,624 Member
    #9
    Fucc said:

    A good place to start, which
    A good place to start, which is also in line with the research I have done and my natriopathics recommendation is the life extension website. There is a pretty comprehensive explanation and details about supplements that have been found to work for colon cancer along with the dosage. Life Extension also sells vitamins and supplements. My understanding is that they are of decent quality.

    Just remember Phil life extensions is selling what they are advertising as good products for colon cancer, so I would be very skeptical of their recommendations.  The best is find a site that isn't selling or recommending just certain brand products.

     

  • tanstaafl
    tanstaafl Member Posts: 1,313 Member
    #10
    renw said:

    The phospholipid is

    The phospholipid is 1-0-alkyl-2-acyl-sn-glycero-3-phospho-(N-acyl) ethanolamine or (PNAE) for short.
    more info here: http://www.ovosan.ru/eng/text.html

    I had a friend in the czech republic post it to me. Its available in most pharmacies there. The russian site above delivers world wide I believe.

    Tony

    Tony (MWNN) you might take a look at this ether lipid class, there is a lot of work that has been done under our radar, starting from 30+ yrs ago including

    1977  astrocytes    http://link.springer.com/article/10.1007/BF02533292?LI=true  

    1983                    http://www.ncbi.nlm.nih.gov/pubmed/6848177

    AOCS library, chem background  http://lipidlibrary.aocs.org/lipids/ethers/index.htm 

    1988 additive effect http://cancerres.aacrjournals.org/content/48/7/1788.full.pdf    (in vitro)

    SKCa channels       http://pubs.rsc.org/en/content/articlelanding/2012/md/c2md20207g

    re cholesterol         http://onlinelibrary.wiley.com/doi/10.1002/ijc.2910490317/abstract

    COX2 interaction    http://apjcn.nhri.org.tw/server/apjcn/volume17/vol17suppl.1/204-207S12-1.pdf 

    2006 tumor signaling  http://www.sciencedirect.com/science/article/pii/S1074552106003000

    2007 antitumor      http://www.ncbi.nlm.nih.gov/pubmed/20338039

    2008              http://apjcn.nhri.org.tw/server/apjcn/volume17/vol17suppl.1/204-207S12-1.pdf

    2013 summary       http://pubmedcentralcanada.ca/pmcc/articles/PMC3520006/;jsessionid=8476CA3D70CE325213A05443DCC7A840.thrasher?lang=en-ca

     

     

  • renw
    renw Member Posts: 282 Member
    #11
    PNAE

    FYI: added a blog post for PNAE with more info: http://www.mcrc4.com/?p=159

  • herdizziness
    herdizziness Member Posts: 3,624 Member
    #12
    renw said:

    PNAE

    FYI: added a blog post for PNAE with more info: http://www.mcrc4.com/?p=159

    Hmmm

    Running in fear trying everything under the sun,, even blue scorpian venom, glad you have a lot of money to waste running hard from cancer, maybe a step back or two may be in order so you can get some real prospective.

     

    Yes, colon cancer sucks, but...going for the crazy stuff is just a waste of money and a pipeline of dreams to a cure.  But if it makes you feel better more power to you, but want to let folks know you aren't giving very good advice and caution them to check with their oncologists before embarking on your pipe dreams.

    Also your blogs start in January and you seem quite comfortable with us, as LivinginNH wondered, who are you?  I think as others do, that you are one who is familiar with us and have posted under another name before, I must say I don't trust much of what you post.

     

  • renw
    renw Member Posts: 282 Member
    #13
    herdizziness said:

    Hmmm

    Running in fear trying everything under the sun,, even blue scorpian venom, glad you have a lot of money to waste running hard from cancer, maybe a step back or two may be in order so you can get some real prospective.

     

    Yes, colon cancer sucks, but...going for the crazy stuff is just a waste of money and a pipeline of dreams to a cure.  But if it makes you feel better more power to you, but want to let folks know you aren't giving very good advice and caution them to check with their oncologists before embarking on your pipe dreams.

    Also your blogs start in January and you seem quite comfortable with us, as LivinginNH wondered, who are you?  I think as others do, that you are one who is familiar with us and have posted under another name before, I must say I don't trust much of what you post.

     

    You don't have to read my
    You don't have to read my posts. As to taking a step back, when 6 different oncologist tell you that there is no cure, no chance of either liver or colon resection and that u will be dead in 2 months due to liver failure and that they have nevere cured anyone with advanced mcrc, you have to look elsewhere. Escozine was a knee jerk reaction as I have stated, I would not have gone down that road after further research. I though it would be useful for others to share my experience with others so that they don't make the same mistakes. But whatever...

    In regards to trying everything, you are damn right and I will try everything I can, though now my choices are based more on solid science.

    As far as checking with oncologists, what's the point? Their advice will alway be NO to everything not presented in a phase 3 trial and spoon fed to them at a pharma industry sponsored conferences.

    My posts start in Jan because I was diagnosed in late october and spent the first months researching everything I could with little time for anything else. Happy?
  • coloCan
    coloCan Member Posts: 1,944 Member
    #14
    renw said:

    You don't have to read my
    You don't have to read my posts. As to taking a step back, when 6 different oncologist tell you that there is no cure, no chance of either liver or colon resection and that u will be dead in 2 months due to liver failure and that they have nevere cured anyone with advanced mcrc, you have to look elsewhere. Escozine was a knee jerk reaction as I have stated, I would not have gone down that road after further research. I though it would be useful for others to share my experience with others so that they don't make the same mistakes. But whatever...

    In regards to trying everything, you are damn right and I will try everything I can, though now my choices are based more on solid science.

    As far as checking with oncologists, what's the point? Their advice will alway be NO to everything not presented in a phase 3 trial and spoon fed to them at a pharma industry sponsored conferences.

    My posts start in Jan because I was diagnosed in late october and spent the first months researching everything I could with little time for anything else. Happy?

    "Berberine"

    have you researched berberine?

  • Fucc
    Fucc Member Posts: 92 Member
    #15
    herdizziness said:

    Just remember Phil life extensions is selling what they are advertising as good products for colon cancer, so I would be very skeptical of their recommendations.  The best is find a site that isn't selling or recommending just certain brand products.

     

    Life extension is trying

    Life extension is trying tosell their supplements, however, I believe their recommendations are sound. They are in line With the endless hours or research I have done and as recommended by my natriopathic oncologist. I also believe that their supplements are of decent quality. The most interesting one is their curcumin supplement.  I would have purchased some, but ieould have to pay duties to get them I to Canada. 

    I also recommend some reading including Life Over Cancer, Anti cancer and Beyond the Magic Bullet. You will find that most of these overlap, but provide useful and hopeful information about cancer.

  • wawaju04976
    wawaju04976 Member Posts: 316 Member
    #16
    renw said:

    You don't have to read my
    You don't have to read my posts. As to taking a step back, when 6 different oncologist tell you that there is no cure, no chance of either liver or colon resection and that u will be dead in 2 months due to liver failure and that they have nevere cured anyone with advanced mcrc, you have to look elsewhere. Escozine was a knee jerk reaction as I have stated, I would not have gone down that road after further research. I though it would be useful for others to share my experience with others so that they don't make the same mistakes. But whatever...

    In regards to trying everything, you are damn right and I will try everything I can, though now my choices are based more on solid science.

    As far as checking with oncologists, what's the point? Their advice will alway be NO to everything not presented in a phase 3 trial and spoon fed to them at a pharma industry sponsored conferences.

    My posts start in Jan because I was diagnosed in late october and spent the first months researching everything I could with little time for anything else. Happy?

    The alternative I am using

    The alternative I am using has been good thus far. I will tell you my oncologist keeps telling my fiance and me, "Just keep doing what you are doing." He cannot comment on "treatments" that are not "approved." He is very pleased w/the progress, and, I hope I don't jinx myself, really is surprised with how I am handling the txs. Bloodwork has been terrific; I am returning to work March 4th (I am a teacher). And yes, I agree, renw, that if my oncologist had told me there was no hope, I would damn well be looking for all options. I didn't get this from my oncologist, but I am stage 4 crc, so I am doing all I can.

    Judy

  • tanstaafl
    tanstaafl Member Posts: 1,313 Member
    #17
    wawaju04976 said:

    The alternative I am using

    The alternative I am using has been good thus far. I will tell you my oncologist keeps telling my fiance and me, "Just keep doing what you are doing." He cannot comment on "treatments" that are not "approved." He is very pleased w/the progress, and, I hope I don't jinx myself, really is surprised with how I am handling the txs. Bloodwork has been terrific; I am returning to work March 4th (I am a teacher). And yes, I agree, renw, that if my oncologist had told me there was no hope, I would damn well be looking for all options. I didn't get this from my oncologist, but I am stage 4 crc, so I am doing all I can.

    Judy

    approach

    One of the biggest decisions is what strategy maximizes improvement and chances.  For me, an overlapping multimodal, multicomponent strategy made the most sense.   Least reliance on any one treatment and having a backup plan (surgery, more chemistry) if things weren't working perfectly. 

    It's taken almost everything to stay ahead of the beast(s) with little margin for error, or dogma.    Wouldn't have made it this far without several conventional treatments, wouldn't have made it without acting on several naughty ideas and replacing someone else's rules with mine.  Several conventional treatments in all probablity (98+%) could not have gone this distance -would have blown everything apart as well as failing to stop the cancer.   

    This disease is a problem that takes a lot to stop.   Can't get cocky, can't run and hide.

     

  • Phil64
    Phil64 Member Posts: 838 Member
    #18
    renw said:

    You don't have to read my
    You don't have to read my posts. As to taking a step back, when 6 different oncologist tell you that there is no cure, no chance of either liver or colon resection and that u will be dead in 2 months due to liver failure and that they have nevere cured anyone with advanced mcrc, you have to look elsewhere. Escozine was a knee jerk reaction as I have stated, I would not have gone down that road after further research. I though it would be useful for others to share my experience with others so that they don't make the same mistakes. But whatever...

    In regards to trying everything, you are damn right and I will try everything I can, though now my choices are based more on solid science.

    As far as checking with oncologists, what's the point? Their advice will alway be NO to everything not presented in a phase 3 trial and spoon fed to them at a pharma industry sponsored conferences.

    My posts start in Jan because I was diagnosed in late october and spent the first months researching everything I could with little time for anything else. Happy?

    The subject of this article was given 2 months to live

    It is an inspirational article!

     

    Also refrerences a list of top rated University Hospitals.

     

    http://www.aarp.org/health/conditions-treatments/info-11-2012/fighting-cancer-edie-sundby.1.html

     

  • wawaju04976
    wawaju04976 Member Posts: 316 Member
    #19
    tanstaafl said:

    approach

    One of the biggest decisions is what strategy maximizes improvement and chances.  For me, an overlapping multimodal, multicomponent strategy made the most sense.   Least reliance on any one treatment and having a backup plan (surgery, more chemistry) if things weren't working perfectly. 

    It's taken almost everything to stay ahead of the beast(s) with little margin for error, or dogma.    Wouldn't have made it this far without several conventional treatments, wouldn't have made it without acting on several naughty ideas and replacing someone else's rules with mine.  Several conventional treatments in all probablity (98+%) could not have gone this distance -would have blown everything apart as well as failing to stop the cancer.   

    This disease is a problem that takes a lot to stop.   Can't get cocky, can't run and hide.

     

    As my fiance and I have said,

    As my fiance and I have said, "We're not putting all our eggs in one basket."

  • pete43lost_at_sea
    pete43lost_at_sea Member Posts: 3,900 Member
    #20
    thanks phil edies story is great

     

    hugs,

    pete

  • pete43lost_at_sea
    pete43lost_at_sea Member Posts: 3,900 Member
    #21
    think about this

    if our cure is outside a drug based solution, it will be friends like renw, tans, tony who may help prove it. i pray we are succesful in germany with immunotherapies.

    its our best hope, not much in the clinical pipeline, the reason, the drug companies are looking down dead ends i suspect. what harm if we do our best while big pharma does its.  i think i would bet on  us.

    i kind of invited renw to join us, i told him we were kind and supportive, most of the time thats true. we are all human and make mistakes. 

    this is a really interesting discussion, the supplement bit. one day sooner or later maybe renw, tans, tony and i can write the colorectal patients guide to effective supplements. until then our posts is it. vit d is a start. who knows how well we can go.

    the issue of hardcore supplementers and newbies is complex, who is going to tell them about cimetidine and psk? likely not the surgeon.

    likely not me, here anyway. but if anyone ppm me i will help how i can.

    hugs,

    pete

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