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Clearing up obvious misconceptions

Forums General Melanoma Community Clearing up obvious misconceptions

  • Post
    NicOz
    Participant

    Well, I’ve decided it’s time to clear up what are some obvious misconceptions about me. Obviously it's going to be long as I have to spell it out carefully so as not to be further misunderstood :P

    Many have made the assumption that I am anti-alternative therapy. I guess that depends on what one defines as ‘alternative therapy’. It seems to be anything that doesn’t involve convention treatment according to the definition of most. Apparently I have  a very different idea, though I'm sure I'm not the lone ranger… maybe.

    Personally, I do not believe that alternative therapy includes supplements. Tumeric. Vit D. Astragalus and the like. In fact, the only thing that can concern me at times with regard to supplements is when people do not check that they are contraindicated for a medication they may be taking. For example- astragalus should not be taken when one is required to use decadron. The reason I KNOW this is because I took the time to look into it… which I would NOT have done, had I not been taking a supplement in which astragalus were included. (And you know me- I wouldn’t be taking astragalus if there wasn’t some evidence it actually DOES have an effect on the immune system, so it is also not the case that anything which could be considered a “natural” remedy is immediately discounted by me)

    Meditation, yoga, massage. Nothing alternative there as far as I can see. People all over the world (and without cancer) practice these things because it makes them feel better. Alternative? Hardly. No, I don’t do those things. Not because I think them alternative, but because while some people obviously enjoy them, I don’t. Hair cuts make me feel good, though, and lots of people have those frequently, but I wouldn’t say I’m being alternative because I do.

    Macrobiotic diets? Exercise? Drinking WATER. Juicing their own vege’s? People without cancer do that too, because of the health benefits. Once again? NOT alternative. The suggest that it IS, I find incredibly strange. I drink water *gasp* AND juice my own vege’s too- doesn’t make me alternative. It doesn’t make doing those things alternative therapies, though.

    Clinics and therapies which claim to treat cancer without any evidence, and many of these have been around for many years so would have been proven one way or the other if the practitioners were interested in providing proof for their therapies- alternative therapy, IMO. Particularly when they are based on cellular knowledge from 50 years ago, and yet are still remaining providing the same tired old claims about the same tired old therapies, and using testimonials with no scientific evidence to support their claims. Some of these have been shown to be worse for the patient (QOL or physically) than doing nothing, so that is why I get somewhat irritated when they are suggested (particularly by people who haven’t undergone the regimen themselves). If I weren’t concerned they may not actually harm some patients, I’d say “knock yourselves out and spend all the money you want”. Trust me on that.

    One other thing I am sceptical about, are claims re: “mets” (usually the lung) which have not been biopsied, and the resulting claims that someone’s lifestyle change has “cured them”. I cannot count the amount of times people have posted concerning lung modules, sure that it’s their melanoma progressing, only to find it has been discovered/confirmed to an infection, or scar tissue from a previous infection. So without a histological diagnosis, a ‘lung nodule’ which goes away or remains stable is not necessary something that has been ‘cured’. And that is not my personal opinion. That is a fact.

    And lastly, the assumption that people make that it is a lifestyle change or supplement that is the reason they have not progressed. I find that somewhat assumptive, particularly when their lack of progression is well inside the norm for all patients in the same situation, and more particularly when people have undergone surgery and/or used conventional medicine to reach NED status. It confuses me as to how someone has come to the conclusion that THEY are the reason they have not progressed, but it’s far from the first time in my life that I’ve been confused. And I guess what I find frustrating relates to other people who are at a different point in their disease can be made to feel like they are to blame for having a different result, rather than mel being to blame like it deserves to be, and I don’t think people take this into consideration enough.

    So please, stop with the mental shortcuts. You’re doing yourselves a disservice by throwing everything that doesn’t involve a medication requiring a prescription under the umbrella of “alternative”, and assuming anyone who takes issue with certain things I have mentioned, as being critical and closed minded.

    Hopefully this is clear enough to be understood. I know I’m from Australia and I have brain tumours, but really… there are times when I wonder if I speak a language from an entirely different planet, not merely a different country when I see how easily misunderstood what I say can be completely misinterpreted.

    So that is my position on this particular issue. Believe it or don't. Attack it or don't. Take it on board, or don't. Either way, I've said what I wanted to say and that's all that really matter to me. But from now on there is no excuse for make assumptions about my belief system, and that's really all I care about :)

    Nic (in a VERY zen state since surgery and planning on remaining that way) Hope everyone else is feeling as good!)

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  • Replies
      Carmon in NM
      Participant

      Gee…I've never had a problem understanding what you had to say. In spite of my own bleeding brain met that affected my language comprehension. Wait…maybe that's not a good thing to say! ;)

      Seriously, I look at it much as you do and I see an acupuncturist, chiropractor and homeopathic doctor as supportive therapies. The homeopathic doctor works directly with my onc to make sure no supplements she gives me will cause problems with any treatments I'm having. Very responsible and a great onc who is positive about supportive therapies.

      My biggest beef is with relatives, friends and total strangers who criticize my treatment choices and try to get me to buy the latest miracle cure they are selling. Or send me endless emails about psychic healers etc who they think I should go to. Carmon in NM

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      Carmon in NM
      Participant

      Gee…I've never had a problem understanding what you had to say. In spite of my own bleeding brain met that affected my language comprehension. Wait…maybe that's not a good thing to say! ;)

      Seriously, I look at it much as you do and I see an acupuncturist, chiropractor and homeopathic doctor as supportive therapies. The homeopathic doctor works directly with my onc to make sure no supplements she gives me will cause problems with any treatments I'm having. Very responsible and a great onc who is positive about supportive therapies.

      My biggest beef is with relatives, friends and total strangers who criticize my treatment choices and try to get me to buy the latest miracle cure they are selling. Or send me endless emails about psychic healers etc who they think I should go to. Carmon in NM

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      KellieSue
      Participant

      Wow, Nic. I really could not have put it any better. I agree 100% with everything that you have said. I never had a problem understanding any of your posts either.

      I also agree with "well-meaning " relatives just trying to get me to drink their magical juice or go to their clinic in Indonesia and I will be cured.

      I seem to think logically in my head but I can't seem to get my thoughts on paper like other people do. I don't sound educated or informed. So thank you for putting the thoughts to paper that I've been thinking.

      Kellie(from Iowa) Stage IV since June 2008

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      KellieSue
      Participant

      Wow, Nic. I really could not have put it any better. I agree 100% with everything that you have said. I never had a problem understanding any of your posts either.

      I also agree with "well-meaning " relatives just trying to get me to drink their magical juice or go to their clinic in Indonesia and I will be cured.

      I seem to think logically in my head but I can't seem to get my thoughts on paper like other people do. I don't sound educated or informed. So thank you for putting the thoughts to paper that I've been thinking.

      Kellie(from Iowa) Stage IV since June 2008

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      Bonnie Lea
      Participant

      I don't even feel adequate enough to respond properly, but Nic I agree wholeheartedly with your words.  We are far apartt in our disease you and I but I get the same sort of questions adivice and why not do this or that, from some well meaning and not so well meaning sources.

      Way back in the beginning when days were young and I was new to this mess, of course a myriad of tests were done to see and to make sure of what we were dealing with.  Lung things were found, but my wise doctor, just did re scans (three separate ones + the original base just to make sure before any conclusions were reached.  I still went into what only I have the right to call Bonnie panic mode.  But he said at that time, it can well be just LIVING  city life, pollution, (not counting the many years I had smoked, sat around a camp fire, inhaaled bug spray, bronchitis as a child, any number of things, and he told me, if things changed, any then the only way would be a biopsy, and no such word as METS would be used, until a proper dx was used.  I mean why put the cart before the horse?

       

      We have a friend who swears by those colon cleansing,  that Reiki (sp) chanting, OMMMM willing my body to behave, and tsked away at me trudging every three months to the oncologist and my other slew of doctors, and even when I developed leision and lost my eyelid, he said  not enuff healthy living.  I wrote him off.  and when he looks at me minus my lid, I really want to throttle him. 

      Alternative medicine?  what is that?  I do the drink water,  eat well, take supplements, still inhibe in deman champers though, check skin all the time, follow doctors, and try to live.  I admire you and all of us here. 

      Take care my friend from down under. and make sure you wear water wings, just in case you are any where near any area that may be still wet. 

      Bonnie Lea

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      Bonnie Lea
      Participant

      I don't even feel adequate enough to respond properly, but Nic I agree wholeheartedly with your words.  We are far apartt in our disease you and I but I get the same sort of questions adivice and why not do this or that, from some well meaning and not so well meaning sources.

      Way back in the beginning when days were young and I was new to this mess, of course a myriad of tests were done to see and to make sure of what we were dealing with.  Lung things were found, but my wise doctor, just did re scans (three separate ones + the original base just to make sure before any conclusions were reached.  I still went into what only I have the right to call Bonnie panic mode.  But he said at that time, it can well be just LIVING  city life, pollution, (not counting the many years I had smoked, sat around a camp fire, inhaaled bug spray, bronchitis as a child, any number of things, and he told me, if things changed, any then the only way would be a biopsy, and no such word as METS would be used, until a proper dx was used.  I mean why put the cart before the horse?

       

      We have a friend who swears by those colon cleansing,  that Reiki (sp) chanting, OMMMM willing my body to behave, and tsked away at me trudging every three months to the oncologist and my other slew of doctors, and even when I developed leision and lost my eyelid, he said  not enuff healthy living.  I wrote him off.  and when he looks at me minus my lid, I really want to throttle him. 

      Alternative medicine?  what is that?  I do the drink water,  eat well, take supplements, still inhibe in deman champers though, check skin all the time, follow doctors, and try to live.  I admire you and all of us here. 

      Take care my friend from down under. and make sure you wear water wings, just in case you are any where near any area that may be still wet. 

      Bonnie Lea

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      glewis923
      Participant

      DITTO !

       

      Hiroshima to the WB tomorrow, right here in Gatorland.  Wish me luck, glad you're me friend.

      Love, Grady & Family.

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      glewis923
      Participant

      DITTO !

       

      Hiroshima to the WB tomorrow, right here in Gatorland.  Wish me luck, glad you're me friend.

      Love, Grady & Family.

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      kylez
      Participant

      Nic, Also gree 100% on alternative treatments. I'd be more willing to consider treatments approved in Europe not yet approved by FDA — if it were even possible to be treated there.

      I'm not currently on any treatment because I don't have any grossly visible disease, and I don't yet have stable CNS. I had two brain mets, one treated 9/29/10 w/surgery and one treated 11/10/10 w/radiosurgery. So I feel the vacuum — no possible protection, can't get any treatment, clinical trials, etc.

      In terms of supplements (which you're not including as alt. treatment)I  tried briefly to fill that vacuum — for about a week — w/reishi, maitake, garlic supplements and licorice tea. All Il-2 boosting supplements apparently. But… I saw my radiation oncologist. She cautioned me against any herbs that have blood thinning properties because of my brain mets. She had a patient, they couldn't figure out why his brain mets kept bleeding out, turned out it was the herbal supplements being prescribed by an herbalist. I stopped w/all of the above right then and there — turns out they al have blood thinning effects.

      So that's another caution — not just interactions with other meds, but also, any herbs/supplements with blood thinning properties should be taken with caution for any of us w/brain mets.

      So I'm back to the vacuum of no treatment for now.

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      kylez
      Participant

      Nic, Also gree 100% on alternative treatments. I'd be more willing to consider treatments approved in Europe not yet approved by FDA — if it were even possible to be treated there.

      I'm not currently on any treatment because I don't have any grossly visible disease, and I don't yet have stable CNS. I had two brain mets, one treated 9/29/10 w/surgery and one treated 11/10/10 w/radiosurgery. So I feel the vacuum — no possible protection, can't get any treatment, clinical trials, etc.

      In terms of supplements (which you're not including as alt. treatment)I  tried briefly to fill that vacuum — for about a week — w/reishi, maitake, garlic supplements and licorice tea. All Il-2 boosting supplements apparently. But… I saw my radiation oncologist. She cautioned me against any herbs that have blood thinning properties because of my brain mets. She had a patient, they couldn't figure out why his brain mets kept bleeding out, turned out it was the herbal supplements being prescribed by an herbalist. I stopped w/all of the above right then and there — turns out they al have blood thinning effects.

      So that's another caution — not just interactions with other meds, but also, any herbs/supplements with blood thinning properties should be taken with caution for any of us w/brain mets.

      So I'm back to the vacuum of no treatment for now.

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      washoegal
      Participant

      Nic- I pretty much agree with what you said.  My only comment is that if people want to believe their lifestyle contributed to their current state of NED, As long as they don't go preaching it to the world – like one former TV star that's fine.  I think we all need to feel that we have some control over our lives.  You'll agree, I think, that Mel does a darn good job of taking a lot of control away from us, so I think there is a certain desperation we all share to try to regain control. 

       

      Trying to define "alternative" medicine is like defining organic foods, we'll be arguing that for a long time.  Is acupuncture alternative medicine?  Does it matter?  As long as it does no harm, and does not prey on people's desperation (like some of the 3rd world clinics) I'm not sure it matters.

       

      I love Aussie humor ….brain tumors and all!

       

      Take care of yourself Nic your precious.

       

      Mary

      Stage 3

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      washoegal
      Participant

      Nic- I pretty much agree with what you said.  My only comment is that if people want to believe their lifestyle contributed to their current state of NED, As long as they don't go preaching it to the world – like one former TV star that's fine.  I think we all need to feel that we have some control over our lives.  You'll agree, I think, that Mel does a darn good job of taking a lot of control away from us, so I think there is a certain desperation we all share to try to regain control. 

       

      Trying to define "alternative" medicine is like defining organic foods, we'll be arguing that for a long time.  Is acupuncture alternative medicine?  Does it matter?  As long as it does no harm, and does not prey on people's desperation (like some of the 3rd world clinics) I'm not sure it matters.

       

      I love Aussie humor ….brain tumors and all!

       

      Take care of yourself Nic your precious.

       

      Mary

      Stage 3

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      jag
      Participant

      Duhhhhhhhhhhhhhhhhhhhhhhhhhhhh

      Nic, I'm having a hard time figurning out what you are saying, I guess all of the brain surgeries did me in. 

      Can you explain it slowly and more simpler?

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        jag
        Participant

        Duuuh pet the rabbits George, pet the rabbits.

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        jag
        Participant

        Duuuh pet the rabbits George, pet the rabbits.

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      jag
      Participant

      Duhhhhhhhhhhhhhhhhhhhhhhhhhhhh

      Nic, I'm having a hard time figurning out what you are saying, I guess all of the brain surgeries did me in. 

      Can you explain it slowly and more simpler?

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      JakeinNY
      Participant

      "Many have made the assumption that I am anti-alternative therapy."

      Who did? Why don't you address those when you see the evidence in their post? Why take up the space here? There are more important things to "grab the headlines" on this board rather than "NicOz AND HER STAND ON "ALTERNATIVE THERAPY, TREATMENTS, ETC."

      To me this is just self-serving garbage from someone whose member profile screams "I am a genius and everyone else is an idiot", although I see that you took out the part about the oncologists being idiots, didn't you?

      p.s. Did you see my response to your criticism of me "mentioning" Dr. Nicholas Gonzalez in the xango mangosteen topic?

      p.s.2 I wish you the best just like everyone else on here…I really do…I'm just NOT going to bite my tongue any longer when I witness the arrogance and "mean-spiritedness" of some people, including you, on here. There is no place for it, especially here. Warm support, guidance, information, etc., etc., etc., etc. should be the goal of everyone on here.

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        NicOz
        Participant

        I don't believe I am under any obligation to disclose my personal correspondence to you?

        Re: oncologists: No. I said they were useless, and I believe it is still in there. And for me, they have been. Given that it is MY profile, I believe I'll put in whatever the heck I please. In fact I think I'll go and update it now!

        Yes I did, however I believe I said would not be back to respond to that post.

        No… well of course I never bother offering any of that. Complete waste of time.

        Now, if you don't mind, I'll go back to spending my energy on people I actually care about.

        Have a nice life.

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        JakeinNY
        Participant

        Hi Nic,

        Disclose personal correspondence? …. IF it was truly personal….No, but I suppose you could have responded to just those that questioned your "stance", unless of course, there were so many that you didn't want to "wade through" all of them, therefore you found it "easier" to start this thread.

        The need to start a thread regarding your "stand"….No…more important things than where Ms. "All about me" stands on alternative….

        No, you took out your opinion of the oncologists in YOUR profile, but it is funnier…who called you horrible, BTW?

        Here is your chance to respond to "that post" about Dr. Nick G, if you have the courage to do it. After all, this is your thread.

        No, I don't mind you spending your energy on people that you care about, as long as it is positive energy…like Reiki!!!

        :)

        Jake

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        bcl
        Participant

        Jake, any of us can start a thread –  you are being very confrontational. Our dear Nic (who has NEVER lacked in courage) is only days out of surgery – please let this go. (Or take your beef to the off topic and quit bumping people who are asking for help.)

        And if you really want to keep the focus on Dr. Nicholas Gonzalez – then perhaps the board needs to have a look at this again.

        http://w3.health.state.ny.us/opmc/factions.nsf/58220a7f9eeaafab85256b180058c032/f566901672739a1a85256a4a0047d2e6/$FILE/ATT82H5C/lc171787.pdf

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        JakeinNY
        Participant

        Linda, I don't want to keep the focus on him, but you report only the negative side of him. I could tell you with certainty that I could have filed a lawsuit, and won, against my previous dermatologist who misdiagnosed my melanoma as Actinic Keratosis (it wasn't even close to being that). He would have had that on his record too, but I decided not to do it because he was always looking out for me. Besides, that judgement against Gonzalez was made in 1994. There are many things that I can bring up in his favor (some are mentioned below) and there are the things that are not. In order to be fair, you have to present the good and the bad.

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        JakeinNY
        Participant

        Linda, I don't want to keep the focus on him, but you report only the negative side of him. I could tell you with certainty that I could have filed a lawsuit, and won, against my previous dermatologist who misdiagnosed my melanoma as Actinic Keratosis (it wasn't even close to being that). He would have had that on his record too, but I decided not to do it because he was always looking out for me. Besides, that judgement against Gonzalez was made in 1994. There are many things that I can bring up in his favor (some are mentioned below) and there are the things that are not. In order to be fair, you have to present the good and the bad.

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        bcl
        Participant

        Jake, any of us can start a thread –  you are being very confrontational. Our dear Nic (who has NEVER lacked in courage) is only days out of surgery – please let this go. (Or take your beef to the off topic and quit bumping people who are asking for help.)

        And if you really want to keep the focus on Dr. Nicholas Gonzalez – then perhaps the board needs to have a look at this again.

        http://w3.health.state.ny.us/opmc/factions.nsf/58220a7f9eeaafab85256b180058c032/f566901672739a1a85256a4a0047d2e6/$FILE/ATT82H5C/lc171787.pdf

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        JakeinNY
        Participant

        Hi Nic,

        Disclose personal correspondence? …. IF it was truly personal….No, but I suppose you could have responded to just those that questioned your "stance", unless of course, there were so many that you didn't want to "wade through" all of them, therefore you found it "easier" to start this thread.

        The need to start a thread regarding your "stand"….No…more important things than where Ms. "All about me" stands on alternative….

        No, you took out your opinion of the oncologists in YOUR profile, but it is funnier…who called you horrible, BTW?

        Here is your chance to respond to "that post" about Dr. Nick G, if you have the courage to do it. After all, this is your thread.

        No, I don't mind you spending your energy on people that you care about, as long as it is positive energy…like Reiki!!!

        :)

        Jake

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        NicOz
        Participant

        I don't believe I am under any obligation to disclose my personal correspondence to you?

        Re: oncologists: No. I said they were useless, and I believe it is still in there. And for me, they have been. Given that it is MY profile, I believe I'll put in whatever the heck I please. In fact I think I'll go and update it now!

        Yes I did, however I believe I said would not be back to respond to that post.

        No… well of course I never bother offering any of that. Complete waste of time.

        Now, if you don't mind, I'll go back to spending my energy on people I actually care about.

        Have a nice life.

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        bcl
        Participant

        Dear dear dear, having a caps hissy fit now are we? I don't get it Jake, first you ask, "why take up the space here? There are more important things to "grab the headlines." Then you proceed to bring the whole issue back to the top of the board and refer (yet again) to a doctor (Nicholas Gonzalez ) you spoke with two years ago. And let's not forget those two inspirational patients you may have met, one of whom is sadly now dead, and another, you have not spoken to in two whole years. (Doesn’t sound very confidence inspiring to me. ) 

        I sure hope this chart shows up, evidently it's a snapshot of your hero's one clinical trial. ( I recall you ended your mango post with the words.. "I am a proponent of "whatever works for that individual" –  well, with documented results like these Jake,  it sure looks like Gonzalez is not your man then after all eh.)

        Let's have a bit more of that warm support, guidance, information, etc., etc., etc., et from you Jake. And less tantrums please.  And for the record, Nic is a genus ….and a most compassionate, generous and now zen one at that!

         

         

         

         

         

        Survivalgraph.jpg

        Patients in the two groups responded similarly to the questionnaires on quality of life before initiation of therapy, but the overall FACT-PA scores during 12 months decreased more in the enzyme group than in the gemcitabine group (Fig 3). Twenty-four percent of total measurements were missing. Quality of life scores of both groups were significantly different (P.01). During the first 6 months of the study, pain scores increased in the enzyme group, but they decreased in the chemotherapy group (P.05); however, few patients reported on use of analgesics. (Table 2).

         

        http://jco.ascopubs.org/content/28/12/2058.abstract

         

        Abstract

        Purpose Conventional medicine has had little to offer patients with inoperable pancreatic adenocarcinoma; thus, many patients seek alternative treatments. The National Cancer Institute, in 1998, sponsored a randomized, phase III, controlled trial of proteolytic enzyme therapy versus chemotherapy. Because most eligible patients refused random assignment, the trial was changed in 2001 to a controlled, observational study.

        Methods All patients were seen by one of the investigators at Columbia University, and patients who received enzyme therapy were seen by the participating alternative practitioner. Of 55 patients who had inoperable pancreatic cancer, 23 elected gemcitabine-based chemotherapy, and 32 elected enzyme treatment, which included pancreatic enzymes, nutritional supplements, detoxification, and an organic diet. Primary and secondary outcomes were overall survival and quality of life, respectively.

        Results At enrollment, the treatment groups had no statistically significant differences in patient characteristics, pathology, quality of life, or clinically meaningful laboratory values. Kaplan-Meier analysis found a 9.7-month difference in median survival between the chemotherapy group (median survival, 14 months) and enzyme treatment groups (median survival, 4.3 months) and found an adjusted-mortality hazard ratio of the enzyme group compared with the chemotherapy group of 6.96 (P < .001). At 1 year, 56% of chemotherapy-group patients were alive, and 16% of enzyme-therapy patients were alive. The quality of life ratings were better in the chemotherapy group than in the enzyme-treated group (P < .01).

        Conclusion Among patients who have pancreatic cancer, those who chose gemcitabine-based chemotherapy survived more than three times as long (14.0 v 4.3 months) and had better quality of life than those who chose proteolytic enzyme treatment.

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        JakeinNY
        Participant

        Hi Linda,

        Nice to discuss this with you.

        A CAPS hissy fit…hardly…look again…what percentage of the characters were CAPS and what weren't?

        First reaction to this is, Gonzalez is not my hero. I don't recall saying that.

        I would like to see him fairly investigated and either praised or shut down, period.

        As for the people I spoke to that were treated by him, they did both have nothing but good to say of him. I was definitely saddened and disappointed to learn that the man (stage IV melanoma, mets. to the liver and possibly pancreas) that I spoke to did die (the obit. did say that he battled cancer), about 5 years after starting with Gonzalez. I don't know what happened to him at this moment. When I spoke to him, he was doing great

        Next: We are discussing melanoma on this site, not pancreatic cancer. As NicOz would say "apples and oranges".

        Regardless of the above, I will stay with you on this pancreatic cancer "trial".

        According to Dr. Gonzalez:

        The lead investigator, Dr. Chabot, had a conflict of interest as he helped develop the GTX chemotherapy that was used in this trial.

        He accused Dr. Chabot of many things, including fraud.

        Only 3 of the patients admitted into his arm of the trial actually were local enough to follow up with him after the initial meeting with him. He also said that most "follow up doctors" were not trying to work with him, trying to convince these people to ditch his treatment, etc 

        He said: "For a number of reasons, including physical disability, psychiatric instability, lack of social support, poor motivation and physician harassment, we have calculated that 30 of the 39 patients ultimately entered into the nutrition arm followed the prescribed regimen not at all, for only brief periods of time, or incompletely. Such epidemic poor compliance differs greatly from what we generally observe among those we see in our private practice. In the current study, this widespread poor and non-compliance helped render the data meaningless, since, by the “intent-to-treat” study design, all patients admitted for treatment with us, even those who never took a supplement, were to be considered “Gonzalez patients” as if fully compliant with the prescribed regimen."

        A Dr. Engel at the NCCAM arm of the NIH wrote a letter to Dr.Chabot saying "In spite of everyone's best efforts, it appears as if the current design and implementation of the study may have resulted in accrual into the two study arms of patient populations that are not comparable. As a consequence, it is very difficult (if not impossible) to ascertain treatment effect with certainty."

        You may want to read this http://www.dr-gonzalez.com/jco_rebuttal.htm if you care.

        Don't shoot the messenger!!!

        I have a number of reasons to believe that maybe Gonzalez is legit. One of them being that I met with him. Another being that I spoke to 2 of his patients. Another being his education and research. Another being his support from 2 individuals at 2 separate large companies. I'm probably forgetting others. If I had to bet on him being legit. or not, I would bet that he was legit, but I would not bet that much on it. I'm just for thoroughly investigating guys like him to conclude if they are legit. or not. As you can probably tell, I'm not fabricating things, as I wouldn't be talking about a breast cancer patient of his that eventually quit his treatment and a melanoma patient of his that did eventually die. I'm not suggesting that anyone go to him, but I'm not suggesting that anyone not go to him either.

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        JakeinNY
        Participant

        Hi Linda,

        Nice to discuss this with you.

        A CAPS hissy fit…hardly…look again…what percentage of the characters were CAPS and what weren't?

        First reaction to this is, Gonzalez is not my hero. I don't recall saying that.

        I would like to see him fairly investigated and either praised or shut down, period.

        As for the people I spoke to that were treated by him, they did both have nothing but good to say of him. I was definitely saddened and disappointed to learn that the man (stage IV melanoma, mets. to the liver and possibly pancreas) that I spoke to did die (the obit. did say that he battled cancer), about 5 years after starting with Gonzalez. I don't know what happened to him at this moment. When I spoke to him, he was doing great

        Next: We are discussing melanoma on this site, not pancreatic cancer. As NicOz would say "apples and oranges".

        Regardless of the above, I will stay with you on this pancreatic cancer "trial".

        According to Dr. Gonzalez:

        The lead investigator, Dr. Chabot, had a conflict of interest as he helped develop the GTX chemotherapy that was used in this trial.

        He accused Dr. Chabot of many things, including fraud.

        Only 3 of the patients admitted into his arm of the trial actually were local enough to follow up with him after the initial meeting with him. He also said that most "follow up doctors" were not trying to work with him, trying to convince these people to ditch his treatment, etc 

        He said: "For a number of reasons, including physical disability, psychiatric instability, lack of social support, poor motivation and physician harassment, we have calculated that 30 of the 39 patients ultimately entered into the nutrition arm followed the prescribed regimen not at all, for only brief periods of time, or incompletely. Such epidemic poor compliance differs greatly from what we generally observe among those we see in our private practice. In the current study, this widespread poor and non-compliance helped render the data meaningless, since, by the “intent-to-treat” study design, all patients admitted for treatment with us, even those who never took a supplement, were to be considered “Gonzalez patients” as if fully compliant with the prescribed regimen."

        A Dr. Engel at the NCCAM arm of the NIH wrote a letter to Dr.Chabot saying "In spite of everyone's best efforts, it appears as if the current design and implementation of the study may have resulted in accrual into the two study arms of patient populations that are not comparable. As a consequence, it is very difficult (if not impossible) to ascertain treatment effect with certainty."

        You may want to read this http://www.dr-gonzalez.com/jco_rebuttal.htm if you care.

        Don't shoot the messenger!!!

        I have a number of reasons to believe that maybe Gonzalez is legit. One of them being that I met with him. Another being that I spoke to 2 of his patients. Another being his education and research. Another being his support from 2 individuals at 2 separate large companies. I'm probably forgetting others. If I had to bet on him being legit. or not, I would bet that he was legit, but I would not bet that much on it. I'm just for thoroughly investigating guys like him to conclude if they are legit. or not. As you can probably tell, I'm not fabricating things, as I wouldn't be talking about a breast cancer patient of his that eventually quit his treatment and a melanoma patient of his that did eventually die. I'm not suggesting that anyone go to him, but I'm not suggesting that anyone not go to him either.

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        bcl
        Participant

        Dear dear dear, having a caps hissy fit now are we? I don't get it Jake, first you ask, "why take up the space here? There are more important things to "grab the headlines." Then you proceed to bring the whole issue back to the top of the board and refer (yet again) to a doctor (Nicholas Gonzalez ) you spoke with two years ago. And let's not forget those two inspirational patients you may have met, one of whom is sadly now dead, and another, you have not spoken to in two whole years. (Doesn’t sound very confidence inspiring to me. ) 

        I sure hope this chart shows up, evidently it's a snapshot of your hero's one clinical trial. ( I recall you ended your mango post with the words.. "I am a proponent of "whatever works for that individual" –  well, with documented results like these Jake,  it sure looks like Gonzalez is not your man then after all eh.)

        Let's have a bit more of that warm support, guidance, information, etc., etc., etc., et from you Jake. And less tantrums please.  And for the record, Nic is a genus ….and a most compassionate, generous and now zen one at that!

         

         

         

         

         

        Survivalgraph.jpg

        Patients in the two groups responded similarly to the questionnaires on quality of life before initiation of therapy, but the overall FACT-PA scores during 12 months decreased more in the enzyme group than in the gemcitabine group (Fig 3). Twenty-four percent of total measurements were missing. Quality of life scores of both groups were significantly different (P.01). During the first 6 months of the study, pain scores increased in the enzyme group, but they decreased in the chemotherapy group (P.05); however, few patients reported on use of analgesics. (Table 2).

         

        http://jco.ascopubs.org/content/28/12/2058.abstract

         

        Abstract

        Purpose Conventional medicine has had little to offer patients with inoperable pancreatic adenocarcinoma; thus, many patients seek alternative treatments. The National Cancer Institute, in 1998, sponsored a randomized, phase III, controlled trial of proteolytic enzyme therapy versus chemotherapy. Because most eligible patients refused random assignment, the trial was changed in 2001 to a controlled, observational study.

        Methods All patients were seen by one of the investigators at Columbia University, and patients who received enzyme therapy were seen by the participating alternative practitioner. Of 55 patients who had inoperable pancreatic cancer, 23 elected gemcitabine-based chemotherapy, and 32 elected enzyme treatment, which included pancreatic enzymes, nutritional supplements, detoxification, and an organic diet. Primary and secondary outcomes were overall survival and quality of life, respectively.

        Results At enrollment, the treatment groups had no statistically significant differences in patient characteristics, pathology, quality of life, or clinically meaningful laboratory values. Kaplan-Meier analysis found a 9.7-month difference in median survival between the chemotherapy group (median survival, 14 months) and enzyme treatment groups (median survival, 4.3 months) and found an adjusted-mortality hazard ratio of the enzyme group compared with the chemotherapy group of 6.96 (P < .001). At 1 year, 56% of chemotherapy-group patients were alive, and 16% of enzyme-therapy patients were alive. The quality of life ratings were better in the chemotherapy group than in the enzyme-treated group (P < .01).

        Conclusion Among patients who have pancreatic cancer, those who chose gemcitabine-based chemotherapy survived more than three times as long (14.0 v 4.3 months) and had better quality of life than those who chose proteolytic enzyme treatment.

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      JakeinNY
      Participant

      "Many have made the assumption that I am anti-alternative therapy."

      Who did? Why don't you address those when you see the evidence in their post? Why take up the space here? There are more important things to "grab the headlines" on this board rather than "NicOz AND HER STAND ON "ALTERNATIVE THERAPY, TREATMENTS, ETC."

      To me this is just self-serving garbage from someone whose member profile screams "I am a genius and everyone else is an idiot", although I see that you took out the part about the oncologists being idiots, didn't you?

      p.s. Did you see my response to your criticism of me "mentioning" Dr. Nicholas Gonzalez in the xango mangosteen topic?

      p.s.2 I wish you the best just like everyone else on here…I really do…I'm just NOT going to bite my tongue any longer when I witness the arrogance and "mean-spiritedness" of some people, including you, on here. There is no place for it, especially here. Warm support, guidance, information, etc., etc., etc., etc. should be the goal of everyone on here.

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      Kim K
      Participant
      Well stated.

      There is something tried and true called the scientific method and Koch’s postulates. You pointed out the best “sniff test” for all those snake oil salesmen. Alternative isn’t the same thing as complementary medicine, and a great one liner – correlation doesn’t equal causation. My mind is also open, I also research, and I also question and probe to make up my own mind. Another snake oil method is to blame or discredit doctors and pharmaceutical companies as being in a conspiracy to keep us sick or not let us in on the “cure” for cancer because it is their business industry. Also, look up their sources and research methodology if they dare to publish it.

      Your gonna love this chick – Hulda Clark’s Cure for ALL Cancers! What a piece of CRA-! I still can’t believe people believe her… Worse yet, she takes some fact and then makes these enormous leaps in judgment to back up her claims….. Puhleeezzzzze!

      Good for you.

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      Kim K
      Participant
      Well stated.

      There is something tried and true called the scientific method and Koch’s postulates. You pointed out the best “sniff test” for all those snake oil salesmen. Alternative isn’t the same thing as complementary medicine, and a great one liner – correlation doesn’t equal causation. My mind is also open, I also research, and I also question and probe to make up my own mind. Another snake oil method is to blame or discredit doctors and pharmaceutical companies as being in a conspiracy to keep us sick or not let us in on the “cure” for cancer because it is their business industry. Also, look up their sources and research methodology if they dare to publish it.

      Your gonna love this chick – Hulda Clark’s Cure for ALL Cancers! What a piece of CRA-! I still can’t believe people believe her… Worse yet, she takes some fact and then makes these enormous leaps in judgment to back up her claims….. Puhleeezzzzze!

      Good for you.

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      JerryfromFauq
      Participant
      Yeah! What is alternative? I suspect that some considered Gleevec that two years ago for all melanoma. It’s still not FDA approved.) I was told by a couple of well known Oncologists then that it was not ready for “prime time” and they didn’t recommend trying it for me. My research (including two other Oncologists) made it appear to be a possibility.
      You are so correct about Knowing how ones meds work and ‘little things’ like the blood thinning effects of many supplements. Some anti-oxidants are actually counter effective when on certain treatments, but positive when on others. My Oncologist warned me about the blood thinning effects of some of my supplements.
      Dear lady, I remember when you were researching and having problems getting your Onc’s to really look at and consider things that weren’t in their mainstream. What can I say Gal?
      Don’t think that I’ve had problems understanding what you’ve had to say. (Well, maybe during the two month period after my summer horse “ride”.)
      Take care my friend and I am so proud of your fighting spirit and doing what you feel is right for you.

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      JerryfromFauq
      Participant
      Yeah! What is alternative? I suspect that some considered Gleevec that two years ago for all melanoma. It’s still not FDA approved.) I was told by a couple of well known Oncologists then that it was not ready for “prime time” and they didn’t recommend trying it for me. My research (including two other Oncologists) made it appear to be a possibility.
      You are so correct about Knowing how ones meds work and ‘little things’ like the blood thinning effects of many supplements. Some anti-oxidants are actually counter effective when on certain treatments, but positive when on others. My Oncologist warned me about the blood thinning effects of some of my supplements.
      Dear lady, I remember when you were researching and having problems getting your Onc’s to really look at and consider things that weren’t in their mainstream. What can I say Gal?
      Don’t think that I’ve had problems understanding what you’ve had to say. (Well, maybe during the two month period after my summer horse “ride”.)
      Take care my friend and I am so proud of your fighting spirit and doing what you feel is right for you.

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      washoegal
      Participant

      For all the unpleasantness that has gone around this post there has been some very good discussion.  I wish I could summarize it all, but I feal inadequate.  I just hope that people in the future that are considering turning to true alternative "cures" come across this post and consider some of the valid points made here.

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        LV
        Participant

        You are right about that.

        After all, it does say at the top of the page: Research, Educate, Advocate.

        And when it was the old MPIP,  the 'I' stood for information.

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        LV
        Participant

        You are right about that.

        After all, it does say at the top of the page: Research, Educate, Advocate.

        And when it was the old MPIP,  the 'I' stood for information.

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      washoegal
      Participant

      For all the unpleasantness that has gone around this post there has been some very good discussion.  I wish I could summarize it all, but I feal inadequate.  I just hope that people in the future that are considering turning to true alternative "cures" come across this post and consider some of the valid points made here.

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