Opinions Please...Alternative vs. Chemo

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Comments

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

    Pete,
    "...get the best professional advice you can afford..."

    In the US that is not as simple as it might seem.

    For example, there are at least two competing organizations licensing Naturopaths, each claiming the other is fraudulent or dangerous.

    Of course I only need a license in 12 of the 50 states, with Nevada and California being states where anyone, regardless of education or intelligence, can hang a shingle claiming to be a doctor of Naturopathy. There is even an internet site, where for $10 I can get the legal title of Doctor (it is for religion, but I can still use the title without explaining it).

    Same is true for TCM in these states.

    Then, even if you decide which organization is right, and you find an NP that is credentialed, you have no way to verify that the credentials have not been forged.

    In this country, spending more money is no guarantee of better (or even real) care.

    its not simple here either
    blake,
    thanks for pointing out the challenges to good care, but i guess all we can do
    anywhere is try to get the best care.

    and i agree with your point that money does not buy quality, see my i love henry post he is cheap and experienced and i trust him and most importantly i have faith in him personally.

    trust me, that drinking the chinese herbal medicine was a big leap of faith for me. but i made the leap of faith and i don't regret it. sipping tea right now.

    hugs,
    pete
  • pete43lost_at_sea
    pete43lost_at_sea Member Posts: 3,900 Member

    My Decision
    I hardly ever write anymore, but never miss your posts and bless all of you. I was dxd 12/8, did 7 rounds of folfox with major issues as a result. Spent 10 day in hospital, I have severe neuropothy in hands,feet,arms,legs. Stomach pretty tight-could be adhesions. In 2/11, got mets to liver, resectin at major c hospital was tried, but failed. Bad liver, if they take out tumor/liver, I probably won't survive, Bad place for RFA, sewed back up, took a lot to recover from6/1 and my colons issues and other issues ITI's, have kept me down most of the time, in other words, I am feel like crap always, so I am refusing Sir Sphere and chemo, so far. CEA was 7 last month, just had c scan, no big changes yet,so I will tell the onc for now I want to live even thou I know it will probably not be forever.Taking some suppliments, watch our foods, but It is my choice for now. They said possible 2 years with chemo, but no assurance on side effects, which I feel sure I'll have especially colon. I don't want to sound negative, but it is my decision for now,,,,,,,and I reserve the right to change my mind and go for chemo. This may sound crazy to most of you, but I feel it is ok for now for me. Age is a factor.......bless those of you who fight on and I respect everyone's thoughts...this arena has been a wonderful place for me. In a way I feel I am experimenting to.....Pat

    pat i am experimenting as well
    good luck with your experiment.
    hugs,
    pete
  • pete43lost_at_sea
    pete43lost_at_sea Member Posts: 3,900 Member

    My Decision
    I hardly ever write anymore, but never miss your posts and bless all of you. I was dxd 12/8, did 7 rounds of folfox with major issues as a result. Spent 10 day in hospital, I have severe neuropothy in hands,feet,arms,legs. Stomach pretty tight-could be adhesions. In 2/11, got mets to liver, resectin at major c hospital was tried, but failed. Bad liver, if they take out tumor/liver, I probably won't survive, Bad place for RFA, sewed back up, took a lot to recover from6/1 and my colons issues and other issues ITI's, have kept me down most of the time, in other words, I am feel like crap always, so I am refusing Sir Sphere and chemo, so far. CEA was 7 last month, just had c scan, no big changes yet,so I will tell the onc for now I want to live even thou I know it will probably not be forever.Taking some suppliments, watch our foods, but It is my choice for now. They said possible 2 years with chemo, but no assurance on side effects, which I feel sure I'll have especially colon. I don't want to sound negative, but it is my decision for now,,,,,,,and I reserve the right to change my mind and go for chemo. This may sound crazy to most of you, but I feel it is ok for now for me. Age is a factor.......bless those of you who fight on and I respect everyone's thoughts...this arena has been a wonderful place for me. In a way I feel I am experimenting to.....Pat

    pat i am experimenting as well
    good luck with your experiment.
    hugs,
    pete
  • PhillieG
    PhillieG Member Posts: 4,866 Member
    John23 said:

    Pat -

    Fearing "doing" can be appraised and proved, but fearing
    "not-doing" is only a psychological fear.

    The mega-trillion dollar cancer industry counts on the
    "fear of not doing".

    They attempt to scare the cancer sufferers by dwelling on
    the lack of "licensing", or the lack of "records" or the lack
    of bonafide test trials, FDA approvals, or "statistics".

    What they don't manage to mention, are the vast numbers of
    licensed physicians that make wrong diagnosis', prescribe
    medications that do more harm than good, or simply make
    terribly wrong judgement calls that impair lives.

    I have been prescribed Nitro for AF by a licensed physician.
    Had I taken it, I would not be typing to you right now.

    My wife was to take a "Baby aspirin" to offset the bad effects
    of VIOXX by a licensed physician. (VIOXX was later removed
    from the market by the FDA for it's noted erosion of the
    cardiovascular system)
    (My wife suffered a ruptured cerebral aneurysm as a result of
    over ten years usage of it)

    My trip to the ER for extreme dehydration (due to a high output
    Ileostomy and a "short bowel syndrome", was met with a diagnosis by
    the head physician of the ER, as: "a severe heart defect that is causing
    the kidney to suffer, making it appear as if you are dehydrated".

    I was initially refused hydration unless I accepted heart medications.
    (I refused and signed papers; was hydrated - heart returned to normal)

    While in ICU, I had an appointment made by a leading Oncologist
    to have a pet scan while I was still in ICU. (A PET while the body
    is in the healing process will give false positives) (confirmed by
    two other surgeons)

    A license does not make a good physician, but it does provide
    the illusion of being well-learned and competent.

    Entrusting your life to anyone else's judgement, is a gamble. It's even
    more of a gamble when what the physician is prescribing, are chemicals
    that are noted to carry severe health consequences, including cancer.

    A "Naturopath" does not prescribe cancer-causing chemicals.
    A TCM practitioner does not utilize cancer-causing herbs.

    A "license" doesn't mean a thing..

    The best example of course: Florida drivers are licensed to drive.

    I guess that should be enough, ehh?

    My very best wishes for good health to you (and everyone else!),

    John

    Nothing to Fear
    I don't understand what the FEAR thing is John. Out of the 10 times the word was used in this thread (prior to my post), 7 came from you and 3 were Blake's response to your comments to him.
    The "F" word is in the majority of your posts.
    Don't spread this around....but everyone is going to die someday...
    Sure, cancer is scary but I'm not fear driven. I've been afraid but I'm not fear driven.
    I think if one becomes driven by fear, then they lose the ability to think clearly.

    We certainly can handle cancer and/or live in fear as much as we want. I'm not saying it's right or wrong. It's our life and we can do what we want (isn't that a song?)
    I'm just afraid we keep visiting the "F" word more than we need to.
    (did I just express fear?)
    -phil
    ;-)
  • here4lfe
    here4lfe Member Posts: 306 Member
    Touchy Subject
    There are some, John23, and pete_lost_at_sea and lisa42 who post their alternative regimes on their profiles. You may want to check those out.

    My wife is following the advice of her oncologist. When we brought up the subject, he seemed to think whatever works, just inform him to make sure it complements the chemotheraphy.

    Best
  • Lifeisajourney
    Lifeisajourney Member Posts: 216

    pat i am experimenting as well
    good luck with your experiment.
    hugs,
    pete

    Guys kiss and make up
    I just wanted to lay out my plan for me for now. You guys are to valuable because you do have different approaches to this disease. I really believe in Johns theories, but a little chicken to go there, so I am doing my approach, which is probably wrong, but I have to live it. I know how bad I feel normally and how bad I'll feel on chemo and what could go wrong with chemo. Haven't had much luck with chemo, surgery, made my choices, now I have to live with them.....not that they are right, but what I feel. I still have options,but choose them not for now,, could miss that opportunity, but still my choice....love you all, and everyone should see these differences, so they can pick their course.......Kiss and make up and keep posting your points.........you are valuable to many people, who are traveling this road....Pat
  • laurettas
    laurettas Member Posts: 372
    Evidence
    For me, I need some evidence from others using a particular treatment showing that it works before I will take the chance on using it. I go on these boards and read numerous stories of stage four people taking chemo, radiation and surgery and living much past the medians quoted. Have asked for twelve people who have had active cancer and used alternative methods to control the growth and or eliminate their cancer and haven't gotten those examples yet. Yes, there are two or three but I have read as many examples of people whose cancer disappeared after doing little or nothing for treatment. At this point we have to go with the treatment that gives the best numbers, much as I hate seeing what the treatment does to my husband. Have to mention, too, that the only time he has thrown up so far in five months was after eating a capsule of gingeroot!
  • PhillieG
    PhillieG Member Posts: 4,866 Member

    Guys kiss and make up
    I just wanted to lay out my plan for me for now. You guys are to valuable because you do have different approaches to this disease. I really believe in Johns theories, but a little chicken to go there, so I am doing my approach, which is probably wrong, but I have to live it. I know how bad I feel normally and how bad I'll feel on chemo and what could go wrong with chemo. Haven't had much luck with chemo, surgery, made my choices, now I have to live with them.....not that they are right, but what I feel. I still have options,but choose them not for now,, could miss that opportunity, but still my choice....love you all, and everyone should see these differences, so they can pick their course.......Kiss and make up and keep posting your points.........you are valuable to many people, who are traveling this road....Pat

    Pat
    I just want to see them kiss!
    :-)
    There is no right or wrong, only what's right for YOU.
    Best wishes to you...
    -phil
  • Buzzard
    Buzzard Member Posts: 3,043 Member
    laurettas said:

    Evidence
    For me, I need some evidence from others using a particular treatment showing that it works before I will take the chance on using it. I go on these boards and read numerous stories of stage four people taking chemo, radiation and surgery and living much past the medians quoted. Have asked for twelve people who have had active cancer and used alternative methods to control the growth and or eliminate their cancer and haven't gotten those examples yet. Yes, there are two or three but I have read as many examples of people whose cancer disappeared after doing little or nothing for treatment. At this point we have to go with the treatment that gives the best numbers, much as I hate seeing what the treatment does to my husband. Have to mention, too, that the only time he has thrown up so far in five months was after eating a capsule of gingeroot!

    I need to right a wrong on an upper post
    I made the statement in a post above that I was taking 4000 mg of Vitamin C per day....sorry my friend let me know of that error...It is actually 4 mg per day not 4000..The 4000 was micrograms.....just wanted to clear that up..I will change it in the prior post to assure that no one does read it and not the rest of these and starts crappin oranges...........sorry for the mistake.........buzz
  • Buzzard
    Buzzard Member Posts: 3,043 Member
    PhillieG said:

    Paper or Plastic?
    Window seat or Aisle seat?
    Coffee or Tea?
    Butter or Margarine?
    Ice Cream of Frozen Yogurt?
    Get the idea?
    To each their own.
    I do agree with others that it doesn't have to be this OR that.
    Why not this AND that?

    I am Stage 4 and
    just started Folfiri/Avastin/5fu........I now also added on my own through research and help from friends, 2000-5000 mg / day of L- Glutamine, 4 mg of Vit K, 2 mls of Milk Thistle Extract and will soon start a regimen of PSK in which has been experimented with in Japan for 20 years or more with moderate to good result. My thoughts are that as long as it doesn't interfere with my standard treatment regimen ( one that I am told was standard protocol per US regs ), then as an advocate for my own health and well being I will search out information and use what I think (and others) might aid in my journey....
    I have felt as if my digestive system is better, I do have more energy, and my farts smell a little worse...other than that, for me its a start to better health...emotionally, physically, and mentally.......for me its a win/win.......and I not only thank but applaude all of you that have stepped up to aid in helping me with this journey all the way around...all of you are great........buzz
  • pete43lost_at_sea
    pete43lost_at_sea Member Posts: 3,900 Member
    PhillieG said:

    :-)
    There's always a cork!
    Postum or herbal?
    Butter...Promise
    Yogurt ain't ice cream. If I was on a desert island and that's all there was I'd consider it.

    Everything in moderation but one should never take moderation to extremes!

    Once again, no one knows what will work for everyone, we just have our own experiences.
    I can't say chemo failed. It didn't fail me. I also can't say alternatives failed, I didnt try them.

    Good luck, I hope whatever you decide works like a charm
    -p

    phil your a genius!!!!
    the cork, its a shame i don't drink wine any more but i'll try and get a few spare corks.
    and moderation, well thats good for some, i wan't to be in the extreme club.
    but as we say here often too each his own.

    we call our shots, we play the cards we are dealt and i guess we share it here!

    i hope my goodluck continues, life in survivorship has got a certain sparkle it never had before crc.

    hugs,
    pete
  • pete43lost_at_sea
    pete43lost_at_sea Member Posts: 3,900 Member
    laurettas said:

    Evidence
    For me, I need some evidence from others using a particular treatment showing that it works before I will take the chance on using it. I go on these boards and read numerous stories of stage four people taking chemo, radiation and surgery and living much past the medians quoted. Have asked for twelve people who have had active cancer and used alternative methods to control the growth and or eliminate their cancer and haven't gotten those examples yet. Yes, there are two or three but I have read as many examples of people whose cancer disappeared after doing little or nothing for treatment. At this point we have to go with the treatment that gives the best numbers, much as I hate seeing what the treatment does to my husband. Have to mention, too, that the only time he has thrown up so far in five months was after eating a capsule of gingeroot!

    hi laurettas
    i have been through my 14 months of crc hell, chemo/rad, then surgery to remove my big t4 stage 3c rectal tumour. 6 months folfox with no breaks and grea blood tests mostly, moderate to severe neuropathy atferward. chronic diarrhea during folfox while with the ilieostomy.

    now i started living like a healthy rabbit the day i was diagnosed, having milk thistle healthy diet, tcm , massage, meditation, hypnosis. my naturopath helped me manage my chronic diarrhea with probiotics, supplements and diet without any codiene. this really helped protect my liver as i understand it. my liver enzymes raised a little towards the end of chemo and soon were normal. i tried samE, lots of different supplements.

    i think they helped me, of course i cannot say for sure, except for the diarrhea management. so i believe as crc patients we have many options that may help make chemo more manageable, help the body bounce back from radiation, from surgery even fight off malaria.

    i had a complete response to chemo/radiation initially. my radiation oncologist was so happy. did the beetroot juice, the chinese mushrooms contribute to the effectiveness. cannot say for sure either, but i think so.

    oncologists are really busy and specialised, they have to focus on colorectal. they just don't have all the answers. not all the things that can help us have been triple bind studied. so the onc's cannot recommend. we cannot recommend.

    in my desperation i have tried what i thought had a reasonable chance of helping me, thats all. i am glad i have.

    i cannot comment of stage 4 who have had active cancer cured by alternatives, its not my experience. but i will speak up for one stage 3 that has been helped by complimentary therapies. i rest easy with what i have tried and continue to try. thats all.

    now i never eat gingerroot, but i often add a thumb nail sized piece of ginger in my vegetable juice most mornings with celery, beetroot, carrot and a few other random greens and fruits. not thrown up yet. touch wood.

    sorry your husband is suffering, the stage 4 treatments sound very heavy. lots gets posted here about things that may help. for me this forum is about ideas. i have read things here and then do my own research and gone with a few suggestions. often its been more that a few other crc's have picked up the same supplements and approaches and i find some comfort that the things i am trying are being used by others here as well.

    i hope your husband is feeling better. if your interested look up milk thistle as a starting point, some top onc recommend it, most don't. search our archives on it and lisa42.

    hugs,
    pete
  • pete43lost_at_sea
    pete43lost_at_sea Member Posts: 3,900 Member
    Buzzard said:

    I need to right a wrong on an upper post
    I made the statement in a post above that I was taking 4000 mg of Vitamin C per day....sorry my friend let me know of that error...It is actually 4 mg per day not 4000..The 4000 was micrograms.....just wanted to clear that up..I will change it in the prior post to assure that no one does read it and not the rest of these and starts crappin oranges...........sorry for the mistake.........buzz

    buzz i thought you were eating 57 oranges a day. thats alot!!
    from the net
    Vitamin C content of a fresh orange is 53 mg per 100 grams, or 70 mg for an average sized orange.

    you might get sore hands peeling that many.

    hugs,
    pete
  • laurettas
    laurettas Member Posts: 372

    hi laurettas
    i have been through my 14 months of crc hell, chemo/rad, then surgery to remove my big t4 stage 3c rectal tumour. 6 months folfox with no breaks and grea blood tests mostly, moderate to severe neuropathy atferward. chronic diarrhea during folfox while with the ilieostomy.

    now i started living like a healthy rabbit the day i was diagnosed, having milk thistle healthy diet, tcm , massage, meditation, hypnosis. my naturopath helped me manage my chronic diarrhea with probiotics, supplements and diet without any codiene. this really helped protect my liver as i understand it. my liver enzymes raised a little towards the end of chemo and soon were normal. i tried samE, lots of different supplements.

    i think they helped me, of course i cannot say for sure, except for the diarrhea management. so i believe as crc patients we have many options that may help make chemo more manageable, help the body bounce back from radiation, from surgery even fight off malaria.

    i had a complete response to chemo/radiation initially. my radiation oncologist was so happy. did the beetroot juice, the chinese mushrooms contribute to the effectiveness. cannot say for sure either, but i think so.

    oncologists are really busy and specialised, they have to focus on colorectal. they just don't have all the answers. not all the things that can help us have been triple bind studied. so the onc's cannot recommend. we cannot recommend.

    in my desperation i have tried what i thought had a reasonable chance of helping me, thats all. i am glad i have.

    i cannot comment of stage 4 who have had active cancer cured by alternatives, its not my experience. but i will speak up for one stage 3 that has been helped by complimentary therapies. i rest easy with what i have tried and continue to try. thats all.

    now i never eat gingerroot, but i often add a thumb nail sized piece of ginger in my vegetable juice most mornings with celery, beetroot, carrot and a few other random greens and fruits. not thrown up yet. touch wood.

    sorry your husband is suffering, the stage 4 treatments sound very heavy. lots gets posted here about things that may help. for me this forum is about ideas. i have read things here and then do my own research and gone with a few suggestions. often its been more that a few other crc's have picked up the same supplements and approaches and i find some comfort that the things i am trying are being used by others here as well.

    i hope your husband is feeling better. if your interested look up milk thistle as a starting point, some top onc recommend it, most don't. search our archives on it and lisa42.

    hugs,
    pete

    Thanks for the reply, Pete
    Yes, unfortunately, the step up from stage three to four is a big one. My dad had stage three years ago, a few months of 5FU and a few weeks of radiation and he was finished. Three years ago he did have to have surgery to remove scar tissue from radiation that was strangling his intestines. But he did nothing to change his lifestyle, which as far as diet is terrible--lots of Hostess desserts and potato chips! Don't think that my husband is going to get away with that simple of treatment with his stage four.

    I have been reading about the supplements but can't find any conclusive evidence that they work. For my husband, I am not sure that he can take a lot of them. He has hay fever allergies and it seems that herbal treatments are not tolerated well. He tried echinacea for colds twice and ended up in bed sicker than he had ever been. Bad effects from one ginger pill so I am nervous to recommend things when his track record on these sorts of things is not too good!

    One of the things that settles his stomach better than most anything is to eat meat. Carbs don't work as well for him, so he eats a lot of meat and so far his blood levels are in the normal range. I could draw the conclusion that meat is the way to go to keep blood levels healthy. Right now, however, our biggest concern is to keep the side effects of the chemo to a minimum and one of the worst for my husband is a tender stomach. Meat helps so he eats it. Right now he is able to eat regularly and go out and do physical things on our farm every day. There is not a day that he is incapacitated even tho he is on FOLFIRI and Erbitux. Quality of life is a biggie for us and so far what we are doing seems to be working well for him, especially compared to some we read about who seem to be quite debilitated from chemo.

    As Phil says, what works for the individual is what is right for that person and what Jake is doing seems to be working well for him right now. Glad that your choices are working well for you, too!
  • pete43lost_at_sea
    pete43lost_at_sea Member Posts: 3,900 Member
    laurettas said:

    Thanks for the reply, Pete
    Yes, unfortunately, the step up from stage three to four is a big one. My dad had stage three years ago, a few months of 5FU and a few weeks of radiation and he was finished. Three years ago he did have to have surgery to remove scar tissue from radiation that was strangling his intestines. But he did nothing to change his lifestyle, which as far as diet is terrible--lots of Hostess desserts and potato chips! Don't think that my husband is going to get away with that simple of treatment with his stage four.

    I have been reading about the supplements but can't find any conclusive evidence that they work. For my husband, I am not sure that he can take a lot of them. He has hay fever allergies and it seems that herbal treatments are not tolerated well. He tried echinacea for colds twice and ended up in bed sicker than he had ever been. Bad effects from one ginger pill so I am nervous to recommend things when his track record on these sorts of things is not too good!

    One of the things that settles his stomach better than most anything is to eat meat. Carbs don't work as well for him, so he eats a lot of meat and so far his blood levels are in the normal range. I could draw the conclusion that meat is the way to go to keep blood levels healthy. Right now, however, our biggest concern is to keep the side effects of the chemo to a minimum and one of the worst for my husband is a tender stomach. Meat helps so he eats it. Right now he is able to eat regularly and go out and do physical things on our farm every day. There is not a day that he is incapacitated even tho he is on FOLFIRI and Erbitux. Quality of life is a biggie for us and so far what we are doing seems to be working well for him, especially compared to some we read about who seem to be quite debilitated from chemo.

    As Phil says, what works for the individual is what is right for that person and what Jake is doing seems to be working well for him right now. Glad that your choices are working well for you, too!

    thanks laurettas
    i hope jake keeps on feeling well. i agree, if its working don't break it. that wish that my choices are working well, is really the key to all these supplement discussions. i hope my supplements are helping, no way of knowing conclusively, just hoping. the juicing , the teas, the supplements take alot of time and expense. i really hope they are worth it. so far so good but i am not even a year out from surgery. plenty of time for things to go wrong ie crc comeback. but also plenty of time to do things to try to stop it.
    hugs,
    pete
  • offthewall
    offthewall Member Posts: 4
    stuff to take WITH chemo is working for my husband
    Hi - hubby stage 4 - on 3rd round chemo - CEA going down - taking AHCC - Japanese mushroom extract used extensively in Japanese hospitals. 5-FU too - but less than 1/2 the original dosage. See my AHCC thread posted 10/4/11 too. (he also takes many anti-oxidents - all with knowledge if not full approval of doctors.
  • ellejaydee
    ellejaydee Member Posts: 1
    lisa42 said:

    PM on the way
    Don't want to start any debates on particular supplements, as has happened on this board before, so I am sending you a pm listing what I currently am taking.

    Lisa

    Im new, need info
    Hi Lisa42. Im new to this site and am looking for more info regarding the supplements you are taking. My husband has stage 4 cc. Diagnosed 06/12/11. He is currently on Folfox & Avastin. He is also taking immunocal(immune system booster), black strap molasses (to increase blood count)and milk thistle(liver). Any and all help/info is greatly appreciated.