FYI - a web conference from Sloan Kettering on Complementary Therapies & Cancer

abrub
abrub Member Posts: 2,174 Member
edited November 2011 in Colorectal Cancer #1
November 17 at 6:00pm EST – click here to submit your questions
Do Complementary Therapies Work?
Barrie Cassileth, PhD,
Memorial Sloan-Kettering Cancer Center and Author of “The Complete Guide to Complementary Therapies in Cancer Care”


http://news.cancerconnect.com/do-complementary-therapies-work-ask-the-expert-about-herbs-acupuncture-and-other-complementary-therapies/

Comments

  • tanstaafl
    tanstaafl Member Posts: 1,313 Member
    integrative "big gun"
    Didn't look like too many showed up. I looked at her chapter on vitamins in her 2011 book. It is recycled from her 1999 book with 1960s-70s AMA-ACS-QW anti-nutrient cant that has been quietly discarded by many, not information that bears resemblance to current scientific and medical literature that I read. I found her coverage of vitamin D from quaint to misleading to off-topic without meaningful address of known colorectal cancer deficiencies.

    I would look for advanced therapeutic nutrient information elsewhere than from a PhD sociologist with long known misstatements. I have previously perceived MSK as hostile to new, inexpensive, generic approaches outside MSK's collection box, including effective therapeutic nutrition. Barrie's presence and published comments reinforce that perception. Perhaps MSK considers therapeutic nutrition as a sociological phenomenon or a psychological problem. Her statements don't seem to distinguish well between "big gun" and "hired gun".
  • abrub
    abrub Member Posts: 2,174 Member
    tanstaafl said:

    integrative "big gun"
    Didn't look like too many showed up. I looked at her chapter on vitamins in her 2011 book. It is recycled from her 1999 book with 1960s-70s AMA-ACS-QW anti-nutrient cant that has been quietly discarded by many, not information that bears resemblance to current scientific and medical literature that I read. I found her coverage of vitamin D from quaint to misleading to off-topic without meaningful address of known colorectal cancer deficiencies.

    I would look for advanced therapeutic nutrient information elsewhere than from a PhD sociologist with long known misstatements. I have previously perceived MSK as hostile to new, inexpensive, generic approaches outside MSK's collection box, including effective therapeutic nutrition. Barrie's presence and published comments reinforce that perception. Perhaps MSK considers therapeutic nutrition as a sociological phenomenon or a psychological problem. Her statements don't seem to distinguish well between "big gun" and "hired gun".

    I thought that the presentation was pretty weak.
    However, I am working directly with one of the MDs in Integrative Medicine who has me on 10,000 iu D3/day; Milk Thistle 300 mg/ twice/day, CoQ10 (200 mg), Super Coriolus (PSK) (3000 mg/day). She's working with me to use supplements to address some of my residual issues, and seems excellent.

    On the other hand, any of us who have done any research knew more than was discussed in the talk. I was hoping for some information, but got nothing out of it.
  • RickMurtagh
    RickMurtagh Member Posts: 587 Member
    MSKCC
    I was away in Colorado for the week so I missed it. I think it would have been well worth the $21 train ticket into the city just to be able to "dialogue."
  • abrub
    abrub Member Posts: 2,174 Member

    MSKCC
    I was away in Colorado for the week so I missed it. I think it would have been well worth the $21 train ticket into the city just to be able to "dialogue."

    Here is a link to the web chat
    http://cancerconnect.com/dr-cassileth-webchat/ It doesn't include the Q&A (but my link disconnected at the Q&A, so I never heard it.)

    For those of us who have some knowledge of the complementary treatments, there was very little new information. However, if you have 20 minutes, you may want to watch it.

    Alice
  • janie1
    janie1 Member Posts: 753 Member
    abrub said:

    Here is a link to the web chat
    http://cancerconnect.com/dr-cassileth-webchat/ It doesn't include the Q&A (but my link disconnected at the Q&A, so I never heard it.)

    For those of us who have some knowledge of the complementary treatments, there was very little new information. However, if you have 20 minutes, you may want to watch it.

    Alice

    Alice, I agree, nothing
    Alice, I agree, nothing earth-shaking. But I was surprised she was very positive on the " mushroom" extract (super corelis???), I think. And did she recommend it "during" chemo? I hate to re-watch it, but I might.
  • abrub
    abrub Member Posts: 2,174 Member
    janie1 said:

    Alice, I agree, nothing
    Alice, I agree, nothing earth-shaking. But I was surprised she was very positive on the " mushroom" extract (super corelis???), I think. And did she recommend it "during" chemo? I hate to re-watch it, but I might.

    Dr. Wesa was very specific
    Dr. Wesa was very specific re the mushroom supplement - that it be the Mushroom Science Super Coriolus 600 gm (the PSK variety, not the PSP). She had me start at 600 mg twice a day for a week, then 1200 mg twice a day for a week. The third week, I added the 3rd capsule to my morning dose, as her goal for me was 3000 mg/day.

    So far, the cheapest source (tho still expensive at $54/bottle of 90) is amazon.com.

    I don't remember if they mentioned it during chemo - you can send an email and ask.
  • John23
    John23 Member Posts: 2,122 Member
    abrub said:

    Dr. Wesa was very specific
    Dr. Wesa was very specific re the mushroom supplement - that it be the Mushroom Science Super Coriolus 600 gm (the PSK variety, not the PSP). She had me start at 600 mg twice a day for a week, then 1200 mg twice a day for a week. The third week, I added the 3rd capsule to my morning dose, as her goal for me was 3000 mg/day.

    So far, the cheapest source (tho still expensive at $54/bottle of 90) is amazon.com.

    I don't remember if they mentioned it during chemo - you can send an email and ask.

    Alice -

    Trametes versicolor (Coriolus) in capsules, is sold in many
    on-line shops (and locally to me), for one half that price, and lower.

    In fact, the raw, untreated mushroom is the least expensive,
    and you can see what you are buying, whereas the powdered
    ones can be part filler....

    Just sayin'...

    My best to you,

    John


    -----------------------------------------
    What's a mushroom by any other name?

    Trametes versicolor
    Coriolus versicolor (Nees ex Fr.) Quel.
    Coriolus zonztus
    Polyporus versicolor
    kawaratake カワラタケ(瓦茸)
    Multicolored polypore ,Turkey Tails

    All one and the same!
    ----------------------------------------
  • abrub
    abrub Member Posts: 2,174 Member
    John23 said:

    Alice -

    Trametes versicolor (Coriolus) in capsules, is sold in many
    on-line shops (and locally to me), for one half that price, and lower.

    In fact, the raw, untreated mushroom is the least expensive,
    and you can see what you are buying, whereas the powdered
    ones can be part filler....

    Just sayin'...

    My best to you,

    John


    -----------------------------------------
    What's a mushroom by any other name?

    Trametes versicolor
    Coriolus versicolor (Nees ex Fr.) Quel.
    Coriolus zonztus
    Polyporus versicolor
    kawaratake カワラタケ(瓦茸)
    Multicolored polypore ,Turkey Tails

    All one and the same!
    ----------------------------------------

    I'm just following my dr's recommendations
    There are other versicolors out there that are not the PSK variety, which is the one that has been tested on colorectal cancers. While my dr does not specify any other sources for my recommended supplements, she feels very strongly about the Super Coriolus PSK, and that the Milk Thistle be from Jarrows. She has no financial interest in either of these, but her experience has shown that these do contain what they are supposed to.

    Hence, while I'd love to save, I'm sticking with my dr's advice as long as I can afford it.
  • RickMurtagh
    RickMurtagh Member Posts: 587 Member
    Web chat
    So it was just a web chat. The flyer at MSKCC made it sound like people would be able to participate in the "live" chat at MSKCC. She was just sitting in her office. Twenty plus minutes long - hardly time to be authoritative. I stopped listening after a few minutes. I have read stuff hat gets to the point quicker and seemed more authoritative, but I have not compared credentials to determine comparative worth of the authors - at least speaking in terms of credentials.
  • have2believe
    have2believe Member Posts: 134
    abrub said:

    I'm just following my dr's recommendations
    There are other versicolors out there that are not the PSK variety, which is the one that has been tested on colorectal cancers. While my dr does not specify any other sources for my recommended supplements, she feels very strongly about the Super Coriolus PSK, and that the Milk Thistle be from Jarrows. She has no financial interest in either of these, but her experience has shown that these do contain what they are supposed to.

    Hence, while I'd love to save, I'm sticking with my dr's advice as long as I can afford it.

    supplements during chemo
    Hi,
    I was just wondering if you took psk while you were on treatment. If I recall correctly, I believe Sloan integrative medicine specialists like Dr. Wesa only treat you when you're off treatment. Do you know if this is true?
  • John23
    John23 Member Posts: 2,122 Member
    abrub said:

    I'm just following my dr's recommendations
    There are other versicolors out there that are not the PSK variety, which is the one that has been tested on colorectal cancers. While my dr does not specify any other sources for my recommended supplements, she feels very strongly about the Super Coriolus PSK, and that the Milk Thistle be from Jarrows. She has no financial interest in either of these, but her experience has shown that these do contain what they are supposed to.

    Hence, while I'd love to save, I'm sticking with my dr's advice as long as I can afford it.

    Alice -

    By now, you must know just how much I advocate TCM, and
    many "alternatives", so please don't misunderstand my point?

    TheCoriolus versicolor mushroom (all it's alternative names
    are listed above) contains -both- PSP and PSK, and -both-
    help the immune system fight cancer.

    The biggest problem with "alternatives" and the alternative
    science industry, is that it's become a money pit, just as
    western medicine has (as our "Buckwirth" kindly takes time
    to point out).

    In TCM, the mushroom is decocted (cooked in water) to
    release the substances, and the liquid is ingested, with the
    patient getting the entire mix of psp, psk, etc. Extra herbs
    and substances are added to the decoction to direct the
    solution to specific organs.

    As with many of the herbs used, they are best used in the
    form they have been used, for thousands of years. Many of
    the herbs and herbal compounds must be used with other
    herbs to get the effect required. Boiling and drinking the total
    solution of many herbs will result with what is expected from
    years of trial and error. Separating the components of an
    herb's basic structure, may not result with anything of value.

    The first two herbs on my list at the "blog" must be used together
    in the amounts specified. If only one or the other is used, then
    one should not expect to see any favorable results. Merck is
    presently studying one of those two herbs for it's value against
    cancer. Do not expect to read that anything of value had been
    found! Perhaps they simply desire to spend millions to denounce
    an inexpensive alternative to their products? The herb will not
    do much alone......

    Please don't misunderstand what I'm trying to say?

    The Coriolus Versicolor mushroom species has great merit
    for building the immune system, as well as fighting cancer cells
    (as does many other mushroom species). But companies charging
    exorbitant amounts for "special products" when you can buy
    the exact same thing for pennies on their ten-spots, is something
    I have great distaste for.

    If spending the cash isn't a problem, and what you are buying
    is giving you more hope than doing otherwise, continue!

    But for others (me included) that look at their bank accounts
    with the understanding that Medicare and other insurance will
    pay for the exorbitant amounts that western medicine facilities
    charge, but for anything else.... it will cost dearly "out-of-pocket",
    the chance to survive can be offset by the costs of doing other
    than "mainstream".

    What I would like to clarify for those that wish to try the "alternative"
    methods, is that the same "products" derived from herbs can be
    bought for $6, rather than $60. There is no substantial difference,
    with exception for the hyperbole of the industry's ads.

    It's very difficult to promote an inexpensive, yet worthwhile
    foreign modality, when the industry is promoting themselves.

    Please continue to do what works for you! My words are not
    meant to take that away, only to help and encourage others
    not to lose hope for any alternative.

    Relative links:
    Chinese Herb Dictionary

    Mushroom Studies

    Be well!

    John
  • abrub
    abrub Member Posts: 2,174 Member

    supplements during chemo
    Hi,
    I was just wondering if you took psk while you were on treatment. If I recall correctly, I believe Sloan integrative medicine specialists like Dr. Wesa only treat you when you're off treatment. Do you know if this is true?

    I was in contact with Gary Deng, MD during chemo
    and he advised me on supplements, tho I never saw him. It's worth an email to them to find out. I know that the posted videos on botanicals and supplements does refer to those that may be taken during chemo as well.

    My recommendation is to send an email to Gary Deng or Kathleen Wesa, and ask your questions of the experts. PM me for email contact info for them.

    Alice
  • abrub
    abrub Member Posts: 2,174 Member
    John23 said:

    Alice -

    By now, you must know just how much I advocate TCM, and
    many "alternatives", so please don't misunderstand my point?

    TheCoriolus versicolor mushroom (all it's alternative names
    are listed above) contains -both- PSP and PSK, and -both-
    help the immune system fight cancer.

    The biggest problem with "alternatives" and the alternative
    science industry, is that it's become a money pit, just as
    western medicine has (as our "Buckwirth" kindly takes time
    to point out).

    In TCM, the mushroom is decocted (cooked in water) to
    release the substances, and the liquid is ingested, with the
    patient getting the entire mix of psp, psk, etc. Extra herbs
    and substances are added to the decoction to direct the
    solution to specific organs.

    As with many of the herbs used, they are best used in the
    form they have been used, for thousands of years. Many of
    the herbs and herbal compounds must be used with other
    herbs to get the effect required. Boiling and drinking the total
    solution of many herbs will result with what is expected from
    years of trial and error. Separating the components of an
    herb's basic structure, may not result with anything of value.

    The first two herbs on my list at the "blog" must be used together
    in the amounts specified. If only one or the other is used, then
    one should not expect to see any favorable results. Merck is
    presently studying one of those two herbs for it's value against
    cancer. Do not expect to read that anything of value had been
    found! Perhaps they simply desire to spend millions to denounce
    an inexpensive alternative to their products? The herb will not
    do much alone......

    Please don't misunderstand what I'm trying to say?

    The Coriolus Versicolor mushroom species has great merit
    for building the immune system, as well as fighting cancer cells
    (as does many other mushroom species). But companies charging
    exorbitant amounts for "special products" when you can buy
    the exact same thing for pennies on their ten-spots, is something
    I have great distaste for.

    If spending the cash isn't a problem, and what you are buying
    is giving you more hope than doing otherwise, continue!

    But for others (me included) that look at their bank accounts
    with the understanding that Medicare and other insurance will
    pay for the exorbitant amounts that western medicine facilities
    charge, but for anything else.... it will cost dearly "out-of-pocket",
    the chance to survive can be offset by the costs of doing other
    than "mainstream".

    What I would like to clarify for those that wish to try the "alternative"
    methods, is that the same "products" derived from herbs can be
    bought for $6, rather than $60. There is no substantial difference,
    with exception for the hyperbole of the industry's ads.

    It's very difficult to promote an inexpensive, yet worthwhile
    foreign modality, when the industry is promoting themselves.

    Please continue to do what works for you! My words are not
    meant to take that away, only to help and encourage others
    not to lose hope for any alternative.

    Relative links:
    Chinese Herb Dictionary

    Mushroom Studies

    Be well!

    John

    John, I appreciate your
    John, I appreciate your input, and know you are very knowledgeable on TCM. I'm working with the alternatives within my comfort zone, but if I couldn't afford the recommended supplements, I would definitely be looking to find less expensive equivalents. Part of what I'm working with are the specific dosages studied by MSK and related Integrative medicine groups.

    Again, it's a matter of personal comfort zones. Your information and knowledge is always appreciated.

    I hope you're having a good ThanksgivingQ

    Alice
  • sdp
    sdp Member Posts: 181
    abrub said:

    I thought that the presentation was pretty weak.
    However, I am working directly with one of the MDs in Integrative Medicine who has me on 10,000 iu D3/day; Milk Thistle 300 mg/ twice/day, CoQ10 (200 mg), Super Coriolus (PSK) (3000 mg/day). She's working with me to use supplements to address some of my residual issues, and seems excellent.

    On the other hand, any of us who have done any research knew more than was discussed in the talk. I was hoping for some information, but got nothing out of it.

    Super corilous - where to get psk
    Hi,

    Pl let me know where to obtain the PSK

    Sdp
  • have2believe
    have2believe Member Posts: 134
    sdp said:

    Super corilous - where to get psk
    Hi,

    Pl let me know where to obtain the PSK

    Sdp

    Amazon carries it
    Just look up Coriolus Versicolor Super Strength, 600 mg.