Please comment on my options

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Comments

  • joemetz
    joemetz Member Posts: 493
    PhillieG said:

    Same Planet, Different Opinions...

    For starters:

    • Not all chemo is carcinogenic.
    • Current targeted therapies ARE effective in many cases (obviously not all cases as there is nothing that is 100% effective 100% of the time)
    • Waiting to see is fine if you want to deal with cancer that's been given the chance to take hold. Being pro-active is an option too.
    • Diet is important, it's well worth looking into.
    • Don't believe everything people post on here (including me). It seems that 90% are people's opinions. It's very easy to get into pissing contests on here, don't waste your time. If something sounds absurd, look into it yourself.
    • Remember that what "cures" one of us might not cure others. This holds true for chemo, diet, TCM, rubbing guava juice on your scalp, etc...

    The choice is yours. I know people tend to want to make the Right Choice but there isn't one. It's what's Right for YOU. The best I believe that you can do is to gather information from here and other sources, and weigh it and see what you're comfortable with. 

    -phil

    Amen Phil

     

    Amen Phil.

    after 12 months of this fight, and time on this CSN site... your words are spot on.

     

  • thxmiker
    thxmiker Member Posts: 1,278
    Dxed said:

    Hello Mike

     

    Thanks for your response. I visited a natural/herbal store and found it there. Still not sure whether or not I should use it. I have to read a bit first and ask a nutritionist.

     

    Thank you again

     

    Sander

    Milk Thistle

    Milk Thistle is to help the Liver function.  There are Studies that show it actually stimulates the liver function, to help process out the toxins.

     

    Best Always, mike

  • annalexandria
    annalexandria Member Posts: 2,571
    Cimetidine...

    is an OTC acid reflux medication (Tagamet is the brand name).  Some studies have suggested that taking it for a period of time before and after surgery can reduce the chance of the cancer spreading.  Personally, I took it for a week before and a week after my 5th surgery (in 2 1/2 years) and that happened to be the last one I've had to go through (it's been a year now, knock on wood).  Don't know if that's what did the trick or not, but it falls into the "can't hurt, might help" category.  With a little luck, you won't have to have any more surgery and this will be a non-issue for you!  Ann Alexandria

  • Dxed
    Dxed Member Posts: 79

    Cimetidine...

    is an OTC acid reflux medication (Tagamet is the brand name).  Some studies have suggested that taking it for a period of time before and after surgery can reduce the chance of the cancer spreading.  Personally, I took it for a week before and a week after my 5th surgery (in 2 1/2 years) and that happened to be the last one I've had to go through (it's been a year now, knock on wood).  Don't know if that's what did the trick or not, but it falls into the "can't hurt, might help" category.  With a little luck, you won't have to have any more surgery and this will be a non-issue for you!  Ann Alexandria

    Thanks for clarifying

     

    Thank you for clarifying the uses and nature of "Cimetidine." I read positive posts on the use of Cimetidine pre and post surgery. I did "knock on wood," and hope you continue to have better health

     

    Sander

  • khl8
    khl8 Member Posts: 807
    Dxed said:

    Thanks for clarifying

     

    Thank you for clarifying the uses and nature of "Cimetidine." I read positive posts on the use of Cimetidine pre and post surgery. I did "knock on wood," and hope you continue to have better health

     

    Sander

    Deciding to take Xeloda or

    Deciding to take Xeloda or not is an option only you can choose.  i took this medication in conjuction with radiation before surgery and had no issues with it at all.  Personally, I would choose the medication to kick nay cells that may be there hiding.  It is a decision that I would not want to regret not making at a later date.

    Good Luck!

  • Dxed
    Dxed Member Posts: 79
    Thanks to all

    Since a sales person has invested in my post and resurrected it, I want to take this opportunity to thank all who offered me their best advice (khI8 thank you). In case you have not seen my third update, I did visit Mayo clinic for a professional second opinion. The recommendation was for the Xeloda and the decision was up to me. Now, I am starting my fourth (out of six) cycle next monday. The side effects were little palm skin peeling during the first three days then disappeared. Now I experience only a mild metallic taste once in a while.

     

    I want to express my gratitude to each and everyone of you for your valuable input

     

    Thank you

     

    Sander

  • Trubrit
    Trubrit Member Posts: 5,643 Member
    PhillieG said:

    Same Planet, Different Opinions...

    For starters:

    • Not all chemo is carcinogenic.
    • Current targeted therapies ARE effective in many cases (obviously not all cases as there is nothing that is 100% effective 100% of the time)
    • Waiting to see is fine if you want to deal with cancer that's been given the chance to take hold. Being pro-active is an option too.
    • Diet is important, it's well worth looking into.
    • Don't believe everything people post on here (including me). It seems that 90% are people's opinions. It's very easy to get into pissing contests on here, don't waste your time. If something sounds absurd, look into it yourself.
    • Remember that what "cures" one of us might not cure others. This holds true for chemo, diet, TCM, rubbing guava juice on your scalp, etc...

    The choice is yours. I know people tend to want to make the Right Choice but there isn't one. It's what's Right for YOU. The best I believe that you can do is to gather information from here and other sources, and weigh it and see what you're comfortable with. 

    -phil

    Like!

    Can I like this post?  Great advice, PhillieG!

  • tanstaafl
    tanstaafl Member Posts: 1,302 Member
    II be....

    I would look at vitamin D3 (low is common and bad) and hsCRP (high is bad) for blood levels. I might consider the Life Extension recommendations (don't need to buy anything there) and the immune building things like PSK.     

    Whether you do chemo or not, if your CEA was somewhat elevated before surgery (more likely to show CEA change if there's a met), getting CEA done a little more frequently, like 6-8 weeks for the first 6-9 months without chemo, can be big, big insurance  policy if something went wrong.   Ditto an earlier follow up scan to avoid later surprises.

    Cimeditine benefit is driven by timing (best around surgeries) and the biology of the cancer cells.  If your cancer cells stain positive with CSLEX1 and CA19-9 (the most common form of bad), the Japanese papers show dramatic improvements in life, even if stage II with chemo.   Thing is that this pathology staining is not standard in the US, and is hard to get.  For stage III and IV, statistics favor cimetidine treatment for CA19-9 blood tests over 2 or if no CA19-9 test at all for basic oral chemo. Cimetidine for Stage II might be best if risk is proportioned from CA19-9 blood test results between 2 and 25.

  • Dxed
    Dxed Member Posts: 79
    tanstaafl said:

    II be....

    I would look at vitamin D3 (low is common and bad) and hsCRP (high is bad) for blood levels. I might consider the Life Extension recommendations (don't need to buy anything there) and the immune building things like PSK.     

    Whether you do chemo or not, if your CEA was somewhat elevated before surgery (more likely to show CEA change if there's a met), getting CEA done a little more frequently, like 6-8 weeks for the first 6-9 months without chemo, can be big, big insurance  policy if something went wrong.   Ditto an earlier follow up scan to avoid later surprises.

    Cimeditine benefit is driven by timing (best around surgeries) and the biology of the cancer cells.  If your cancer cells stain positive with CSLEX1 and CA19-9 (the most common form of bad), the Japanese papers show dramatic improvements in life, even if stage II with chemo.   Thing is that this pathology staining is not standard in the US, and is hard to get.  For stage III and IV, statistics favor cimetidine treatment for CA19-9 blood tests over 2 or if no CA19-9 test at all for basic oral chemo. Cimetidine for Stage II might be best if risk is proportioned from CA19-9 blood test results between 2 and 25.

    Thanks Tanstaafl

     

     

    I have to study carefully your most welcome post. D3 was serriously deficient (7.50 that low; acceptable 70 out of 125 optimum). Docs have not mentioned it until I myslef asked to be tested. now I am on 45000 UI weekly. CEA after sugery was 1.9; since then I am tested monthly (only once did it get to 3.6, the next was 2.3. I am a smoker, and the normal range for smokers is 0-6); ca19-9 I did it once last month (12), the range is 0-30ish. When in Rochester MN, I asked my Mayo's nurse about CEA, and she said they don't rely much on it (I was not tested for it).

     

    I do not know what is hsCRP, PSK nor CSLEX; would ask my onc next monday, and would surely appreciate your input.

     

    would you please elaborate on your last sentence (Cimetidine for Stage II might be best if risk is proportioned from CA19-9 blood test results between 2 and 25). As I understand it, you are suggesting that I take Cimetidine since my ca19-9 is within the range of 2-25. Do you care to suggest a dose? frequency? and anything that I might research or ask my onc.?

     

    Thank you very much for your suggestions

     

    Sander

     

  • tanstaafl
    tanstaafl Member Posts: 1,302 Member
    Dxed said:

    Thanks Tanstaafl

     

     

    I have to study carefully your most welcome post. D3 was serriously deficient (7.50 that low; acceptable 70 out of 125 optimum). Docs have not mentioned it until I myslef asked to be tested. now I am on 45000 UI weekly. CEA after sugery was 1.9; since then I am tested monthly (only once did it get to 3.6, the next was 2.3. I am a smoker, and the normal range for smokers is 0-6); ca19-9 I did it once last month (12), the range is 0-30ish. When in Rochester MN, I asked my Mayo's nurse about CEA, and she said they don't rely much on it (I was not tested for it).

     

    I do not know what is hsCRP, PSK nor CSLEX; would ask my onc next monday, and would surely appreciate your input.

     

    would you please elaborate on your last sentence (Cimetidine for Stage II might be best if risk is proportioned from CA19-9 blood test results between 2 and 25). As I understand it, you are suggesting that I take Cimetidine since my ca19-9 is within the range of 2-25. Do you care to suggest a dose? frequency? and anything that I might research or ask my onc.?

     

    Thank you very much for your suggestions

     

    Sander

     

    the other path(ology)

    The US oncologists typically hadn't read much (or anything) about cimetidine 3 years ago, when we started. So don't be surprised at their first answer.  But it's changing, and your interest may help it change.  

    Our CEA readings (every 2-5 weeks) seem to be more consistent than most people report here.  When my wife got sick three years ago I found a lab with that had just changed to new equipment several months earlier.  Also she gets her blood tested 16-30 hours after her latest IV vitamin C infusion, which is a huge anti-inflammatory, and may reduce inflammatory interferences with CEA.

     

    Blood vitamin D is frequently reported as ng/mL or nmol/L, so without the specific units, it is ambiguous and confusing.

    hsCRP - high sensitivity C reactive protien for inflammation. Levels over 2 or 3 may suggest anti-inflammatories, natural and not, a la the LEF recommendations for CRC.  

    PSK - Polysaccharide K, a Corioulus versicolor extract developed in Japan for  improved bone marrow and immune function for colorectal cancer with or without oral chemo. Something else US oncologists probably won't be familiar with, but alternative MD or ND probably will. 

    CSLEX or CSLEX1 - A histological stain commonly used in Japanese blood tests that tests for sialyl Lewis X antigen.  Used with CA19-9 stain on fixed tumor tissue samples for pathology, Japanese research indicated a common double positive was quantitatively (100%) pretty grim without proper treatment.  Twenty years ago, stage II for these markers = stage IV with just 5FU.   A whole series of Japanese MD-PhDs appear to think cimetidine is part of that proper treatment.  

    Two years ago, my wife was being sized for bad last year or so, by surgeons (inoperable) and oncologists alike. She is also CA19-9 - CSLEX1 double positive (confirmed after 15+ months post dx) but had been taking 1200-1600 mg of cimetidine daily since the first days of her diagnosis.   Finally, we found a surgeon, trained in Japan rather than the US, that would listen to our story about stopping metastasis.  He was so interested and blown away by all the supporting blood data, he accepted my wife's case.  

    Cimetidine was dosed at 800 mg per day for one year with light oral 5FU chemo for stage II and III patients in the trial analyzed by Matsumoto et al (2002).  LEF recommends 1000-1600 mg CIM per da .  My initial decision for stage III or IV (nasty surprises) was for her to use 1200-1600 mg cimetidine (800 at night) until blood CA19-9 was confirmed or not by CA19-9/CSLEX tissue histology.  Long term cimetidine after surgery appears to be contraindicated for CA19-9 blood values less than 2, about 10% of advanced CRC patients. You will need to choose your own path(ologist) and get professional advice, which can vary greatly.  I have not seen anyone advocate smoking.

    I suggest that you read and search as much as possible.   With mild chemo and all those supplements, my wife is never sick from her chemo, the cancer residues are stable or shrinking, and she is not planning on leaving anytime soon.  

     

     

     

  • Dxed
    Dxed Member Posts: 79
    tanstaafl said:

    the other path(ology)

    The US oncologists typically hadn't read much (or anything) about cimetidine 3 years ago, when we started. So don't be surprised at their first answer.  But it's changing, and your interest may help it change.  

    Our CEA readings (every 2-5 weeks) seem to be more consistent than most people report here.  When my wife got sick three years ago I found a lab with that had just changed to new equipment several months earlier.  Also she gets her blood tested 16-30 hours after her latest IV vitamin C infusion, which is a huge anti-inflammatory, and may reduce inflammatory interferences with CEA.

     

    Blood vitamin D is frequently reported as ng/mL or nmol/L, so without the specific units, it is ambiguous and confusing.

    hsCRP - high sensitivity C reactive protien for inflammation. Levels over 2 or 3 may suggest anti-inflammatories, natural and not, a la the LEF recommendations for CRC.  

    PSK - Polysaccharide K, a Corioulus versicolor extract developed in Japan for  improved bone marrow and immune function for colorectal cancer with or without oral chemo. Something else US oncologists probably won't be familiar with, but alternative MD or ND probably will. 

    CSLEX or CSLEX1 - A histological stain commonly used in Japanese blood tests that tests for sialyl Lewis X antigen.  Used with CA19-9 stain on fixed tumor tissue samples for pathology, Japanese research indicated a common double positive was quantitatively (100%) pretty grim without proper treatment.  Twenty years ago, stage II for these markers = stage IV with just 5FU.   A whole series of Japanese MD-PhDs appear to think cimetidine is part of that proper treatment.  

    Two years ago, my wife was being sized for bad last year or so, by surgeons (inoperable) and oncologists alike. She is also CA19-9 - CSLEX1 double positive (confirmed after 15+ months post dx) but had been taking 1200-1600 mg of cimetidine daily since the first days of her diagnosis.   Finally, we found a surgeon, trained in Japan rather than the US, that would listen to our story about stopping metastasis.  He was so interested and blown away by all the supporting blood data, he accepted my wife's case.  

    Cimetidine was dosed at 800 mg per day for one year with light oral 5FU chemo for stage II and III patients in the trial analyzed by Matsumoto et al (2002).  LEF recommends 1000-1600 mg CIM per da .  My initial decision for stage III or IV (nasty surprises) was for her to use 1200-1600 mg cimetidine (800 at night) until blood CA19-9 was confirmed or not by CA19-9/CSLEX tissue histology.  Long term cimetidine after surgery appears to be contraindicated for CA19-9 blood values less than 2, about 10% of advanced CRC patients. You will need to choose your own path(ologist) and get professional advice, which can vary greatly.  I have not seen anyone advocate smoking.

    I suggest that you read and search as much as possible.   With mild chemo and all those supplements, my wife is never sick from her chemo, the cancer residues are stable or shrinking, and she is not planning on leaving anytime soon.  

     

     

     

    Thanks Tanstaafl

     

     

    I cannot thank you enough for taking the time to respond. I appreciate it very much. I am impressed by the good results you and your wife have achieved. Wish you both all the success.

     

    I will be doing my homework till next monday when I start my fourth cycle and meet my oncologist. I will be carrying with me all I can get my hands on, and have as many questions as I can put together. I sure will talk about Cimetidine, and ask for testing those markers if they are not included. I do not know too many blood tests on the test sheet. It is perhaps time to familiarize myself all these factors.

     

    Your help is much appreciated and valued. Thank you

     

    Sander

  • tanstaafl
    tanstaafl Member Posts: 1,302 Member
    Dxed said:

    Thanks Tanstaafl

     

     

    I cannot thank you enough for taking the time to respond. I appreciate it very much. I am impressed by the good results you and your wife have achieved. Wish you both all the success.

     

    I will be doing my homework till next monday when I start my fourth cycle and meet my oncologist. I will be carrying with me all I can get my hands on, and have as many questions as I can put together. I sure will talk about Cimetidine, and ask for testing those markers if they are not included. I do not know too many blood tests on the test sheet. It is perhaps time to familiarize myself all these factors.

     

    Your help is much appreciated and valued. Thank you

     

    Sander

    caveat

    If you are on oxaliplatin, I am sure that there needs to be separation in time of administration with high dose cimetidine.   Whether that's hours, days or weeks, I don't know and would be interested to see literature or basic test results, rather than just ex cathedra opinion.   

  • Dxed
    Dxed Member Posts: 79
    tanstaafl said:

    caveat

    If you are on oxaliplatin, I am sure that there needs to be separation in time of administration with high dose cimetidine.   Whether that's hours, days or weeks, I don't know and would be interested to see literature or basic test results, rather than just ex cathedra opinion.   

    Hi again

     

     

     

    Yes I am on oxaliplatin (infusion every 21 days), 14 days of Xeloda (1500 morning 1500 evening), one week break. I will be asking about the speration optimum period. I am not hopeful, though. Probably they would not know or have no idea. If they did they would have said something. I remember asking about cimetidine around the time of the surgery (Dec. 23) and cannot remember what the answer was. but it never came up in the following meetings. At that time I was cancer-rocky (things did not mean what they do now, having the minimum education, that is). But I will bug them with alot of questions.

     

    Thanks for bringing the Oxaliplatin issue.

  • Dxed
    Dxed Member Posts: 79
    Tastaafl, Tagamet or Zantac

     

     

    If you have come across Ranitidine (Zantac) as supposedly a better newer generation superceding Tagamet, i hope you would say a word or two. After our last exchange, I promised to ask my Onc about Tagamet. I did, and he said we do not recommend it for almost the past 15 yrs, we use intead Ranitidine for normal doses (for acidity). He has nothing to say on its relation to cancer and no knowledge on high doses; he simply has no idea other than what he has heard (not sudies or readings). Told him about Japanese studies and recommendation, and he promised to look into those.Ranitidine seems to have improvements over Tagamet's side effects, but I am not sure whether or not those imporvement are/were the recipes for the secret magic it seems to hold and for promise most people attribute to its use.

     

    If you your research has some light on the topic, please share

     

    Thanks

     

    Sander

  • tanstaafl
    tanstaafl Member Posts: 1,302 Member
    Dxed said:

    Tastaafl, Tagamet or Zantac

     

     

    If you have come across Ranitidine (Zantac) as supposedly a better newer generation superceding Tagamet, i hope you would say a word or two. After our last exchange, I promised to ask my Onc about Tagamet. I did, and he said we do not recommend it for almost the past 15 yrs, we use intead Ranitidine for normal doses (for acidity). He has nothing to say on its relation to cancer and no knowledge on high doses; he simply has no idea other than what he has heard (not sudies or readings). Told him about Japanese studies and recommendation, and he promised to look into those.Ranitidine seems to have improvements over Tagamet's side effects, but I am not sure whether or not those imporvement are/were the recipes for the secret magic it seems to hold and for promise most people attribute to its use.

     

    If you your research has some light on the topic, please share

     

    Thanks

     

    Sander

    Only cimetidine.  

    Only cimetidine.  Nothing else has cimetidine's cancer inhibiting results. Also cimetidine loses effectiveness when mixed with the proton pump inhibitors.  We're educating the drs.

  • Dxed
    Dxed Member Posts: 79
    Thanks

     

    Tanstaafl

     

    much obliged; a "thank you" is not enough

     

    Sander