I am sorry J. Unfortunately you did the the opposite of what you should have been doing.
Multiple myeloma patients are too alkaline. We need a more acidic diet of animal fats and red meat. By making your body even more alkaline you helped the cancer.
Forums
Re: Unconventional methods treating multiple myeloma
This is not a comment to a specific post in this discussion, but a general input,
I have now read this long thread and I find that it is in reality not so much a discussion for or against using so called alternative methods as well as so called established methods ... but more whether you will go for methods that are proven to work - evidence based - in opposition to "I believe that ...".
I do not believe that any of us here should be for or against meat, chemo/medicine or this treatment or that medicine, being to "alkaline", or the opposite.
It would be better to base the discussion on what is working: What is tested, what are the results, etc., etc.
I am critical towards established medicine, of course I am. We should all be critical. And I am critical towards "alternative" medicine, whatever that is. Of course.
But I am always less critical towards those who submit to evidence-based research, with trials where the results of a treatment are carefully measured against no treatment and/or other treatments. And I am puzzled by the fact that so few "alternative" methods are accepting evidence based tests and blind tests.
My tendency is to insist on advice and treatment that is tested and proved to work, and where I can read and try to understand scientific articles and reviews. I am less inclined to accept what somebody from a personal point of view "believes" in.
I am receiving treatment and I am a very critical and annoying / irritating patient. I do not accept a treatment plan just because it is the "standard treatment" for a specific diagnosis. I want to know why this is chosen for me, what do professionals in other parts of the world do, etc. etc.
I do also really respect specialists who admit their own doubts and who dare to say that they know that in just a few years they expect to recommend completely different treatment paths compared to what they do now. And I am of course then listening to why they, at the moment, do still recommend the present regime.
But just because a specific treatment is recommended to me in my present situation, I do not dare to suggest that somebody else should take this treatment as well. Before doing so, I would need to have all available information on the patient ... AND I would have to be an expert on the area. I am not!
It is indeed OK to spread the news about novel methods, supplements or radical alternatives. But I do not believe that it is OK to recommend anyone drop a treatment that is proven to work and go for alternative "clinics" or "doctors" who do not accept evidence, blind tests, etc. etc.
This is not a discussion for or against alternative methods, but for or against evidence based conclusions.
Please, when you recommend something, do refer to solid research.
Best regards to everyone here
I have now read this long thread and I find that it is in reality not so much a discussion for or against using so called alternative methods as well as so called established methods ... but more whether you will go for methods that are proven to work - evidence based - in opposition to "I believe that ...".
I do not believe that any of us here should be for or against meat, chemo/medicine or this treatment or that medicine, being to "alkaline", or the opposite.
It would be better to base the discussion on what is working: What is tested, what are the results, etc., etc.
I am critical towards established medicine, of course I am. We should all be critical. And I am critical towards "alternative" medicine, whatever that is. Of course.
But I am always less critical towards those who submit to evidence-based research, with trials where the results of a treatment are carefully measured against no treatment and/or other treatments. And I am puzzled by the fact that so few "alternative" methods are accepting evidence based tests and blind tests.
My tendency is to insist on advice and treatment that is tested and proved to work, and where I can read and try to understand scientific articles and reviews. I am less inclined to accept what somebody from a personal point of view "believes" in.
I am receiving treatment and I am a very critical and annoying / irritating patient. I do not accept a treatment plan just because it is the "standard treatment" for a specific diagnosis. I want to know why this is chosen for me, what do professionals in other parts of the world do, etc. etc.
I do also really respect specialists who admit their own doubts and who dare to say that they know that in just a few years they expect to recommend completely different treatment paths compared to what they do now. And I am of course then listening to why they, at the moment, do still recommend the present regime.
But just because a specific treatment is recommended to me in my present situation, I do not dare to suggest that somebody else should take this treatment as well. Before doing so, I would need to have all available information on the patient ... AND I would have to be an expert on the area. I am not!
It is indeed OK to spread the news about novel methods, supplements or radical alternatives. But I do not believe that it is OK to recommend anyone drop a treatment that is proven to work and go for alternative "clinics" or "doctors" who do not accept evidence, blind tests, etc. etc.
This is not a discussion for or against alternative methods, but for or against evidence based conclusions.
Please, when you recommend something, do refer to solid research.
Best regards to everyone here
-
Lev - Name: Lev
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: June 2014
- Age at diagnosis: 57
Re: Unconventional methods treating multiple myeloma
Unfortunately, no one wants to spend millions of dollars to pay for research on alternative therapies as they would never recoup their money or make money as natural therapy can not be patent. So you will won't see the scientific research.
You have to have faith in what ever you do. Trust your doctor and the therapy. So if you trust your oncologist and the drugs you are taking, you should do those.
I think this was started as there are some people looking for ideas of natural methods to use with out drugs or to integrate with conventional treatments.
If you need scientific proof then these methods are not for you, but others should be able to discuss them with out your approval.
I do know patients that are doing better with a meat diet, how ever, this is not a diet that kills cancer cells or cures some one.
I had hair analysis done by Dr. Gonzalez that shows a diet that provides the best health of my body, the best way for me to metabolize nutrients, and supplements are given that help my body to be healthy. He has found multiple myeloma patients do better with a carnivore diet.
But again, the diet is not meant to cure, only to provide a healthier body to fight cancer.
You have to have faith in what ever you do. Trust your doctor and the therapy. So if you trust your oncologist and the drugs you are taking, you should do those.
I think this was started as there are some people looking for ideas of natural methods to use with out drugs or to integrate with conventional treatments.
If you need scientific proof then these methods are not for you, but others should be able to discuss them with out your approval.
I do know patients that are doing better with a meat diet, how ever, this is not a diet that kills cancer cells or cures some one.
I had hair analysis done by Dr. Gonzalez that shows a diet that provides the best health of my body, the best way for me to metabolize nutrients, and supplements are given that help my body to be healthy. He has found multiple myeloma patients do better with a carnivore diet.
But again, the diet is not meant to cure, only to provide a healthier body to fight cancer.
Re: Unconventional methods treating multiple myeloma
I wanted to share this documentary. In the beginning Ty interviews a doctor that finds out he has multiple myeloma. He did alternative therapy with no conventional treatment and has been cancer free 4 years. This will be only up for free viewing today till 9 pm, so watch today if you have time.
[Video no longer available.]
[Video no longer available.]
Re: Unconventional methods treating multiple myeloma
dee777 wrote:
Sorry, but this is what I will call a lame excuse. In Europe – and I am sure also in the US and many other places – billions of public funding and research at public universities goes into free research into new methods for curing cancer etc. etc.
And there is a lot of focus on different methods and alternative medicine as well.
The only problem is that, while some of the alternative methods that have been tested have proven to have positive effects, or to help with side effects and other problems, in most cases they do not in a radical way fight the cancer. The active ingredients in many herbs, in red wine, and many other substances have been tested for their effects against multiple myeloma, but have not lived up to the expectations.
If somebody can present a real cure or promising new treatment for multiple myeloma, then I have no doubt that the money needed for testing will be made available.
At the moment a very important discussion regarding autologous stem cell transplantation is taking place. And there is already a controlled clinical trial involving 1500 patients where half of them will receive this treatment while the other half will not. This is the proper way to handle research and testing, and those who will not submit to methods like this does probably not have much to offer.
I know that a lot of what is used in "established" medicine today has its roots in what some of you will call "alternative" medicine. Just one example is Taxol (from Taxus brevifolia) which was "found" and explored by the U.S. National Cancer Institute in the sixties. Many more examples can be found.
But of course we do not go out into the forest or the jungle to extract the oils and juices from threes and fruits - we need them to be extracted and purified and controlled before drinking or injecting them. And we need intensive research to know about side effects, how much to give and when not to give them.
This is not a discussion that is very important to me. And I am not for or against any specific method.
I am a strong advocate of using the methods that work ... and I do not care whether they are invented at Hoffmann La Roche, at the university of Copenhagen, or by Indians in Amazon who found out that a specific root is a cure to a disease.
What I care about is that it is tested, confirmed, and then implemented in a responsible way.
Best regards
Lev
Unfortunately, no one wants to spend millions of dollars to pay for research on alternative therapies as they would never recoup their money or make money as natural therapy can not be patent. So you will won't see the scientific research.
Sorry, but this is what I will call a lame excuse. In Europe – and I am sure also in the US and many other places – billions of public funding and research at public universities goes into free research into new methods for curing cancer etc. etc.
And there is a lot of focus on different methods and alternative medicine as well.
The only problem is that, while some of the alternative methods that have been tested have proven to have positive effects, or to help with side effects and other problems, in most cases they do not in a radical way fight the cancer. The active ingredients in many herbs, in red wine, and many other substances have been tested for their effects against multiple myeloma, but have not lived up to the expectations.
If somebody can present a real cure or promising new treatment for multiple myeloma, then I have no doubt that the money needed for testing will be made available.
At the moment a very important discussion regarding autologous stem cell transplantation is taking place. And there is already a controlled clinical trial involving 1500 patients where half of them will receive this treatment while the other half will not. This is the proper way to handle research and testing, and those who will not submit to methods like this does probably not have much to offer.
I know that a lot of what is used in "established" medicine today has its roots in what some of you will call "alternative" medicine. Just one example is Taxol (from Taxus brevifolia) which was "found" and explored by the U.S. National Cancer Institute in the sixties. Many more examples can be found.
But of course we do not go out into the forest or the jungle to extract the oils and juices from threes and fruits - we need them to be extracted and purified and controlled before drinking or injecting them. And we need intensive research to know about side effects, how much to give and when not to give them.
This is not a discussion that is very important to me. And I am not for or against any specific method.
I am a strong advocate of using the methods that work ... and I do not care whether they are invented at Hoffmann La Roche, at the university of Copenhagen, or by Indians in Amazon who found out that a specific root is a cure to a disease.
What I care about is that it is tested, confirmed, and then implemented in a responsible way.
Best regards
Lev
-
Lev - Name: Lev
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: June 2014
- Age at diagnosis: 57
Re: Unconventional methods treating multiple myeloma
Lev,
I think you make some great points. Like you, I do not look at or like to categorize treatments as being “conventional” or “alternative” but what works and does not works. If there is evidence that a therapy works, then I am take an interest in it and see if it something that I could use.
Too often with alternative therapies the evidence to support the therapy claims just does exist or does not stand up to scientific peer review, so I would have to have “faith” to go down that path.
Like Lev, I see sometimes there are alternative therapies that may have some effectiveness, but then are they better than other therapies? Again I look at what works and what does not work and I would rack and stack all options to see which is the best. I would not pursue a therapy just because it is “alternative” and fits in with my belief system, it has to be better than the other options available to me.
It is also a myth that the pharmaceutical industry does not look to nature for natural compounds as potential cures for diseases and cancer because they cannot make money on it, they can.
Lev’s example of Taxol is a classic case I remember hearing about many years ago. Taxol was first made from the bark of the Pacific yew tree. It took the bark of an entire tree to make a treatment killing the tree. This made the drug very expensive and constrained supply. Eventually they learned how to synthesize the active ingredient in the bark so they no longer have to harvest bark from trees to make the drug.
Many years ago I saw a report, on 60 Minutes if I remember, on how there are several major pharmaceutical companies trying to test as many natural compounds from the Amazon forest for anti-cancer properties before they are gone forever.
They had teams down there collecting as much as they could then mass testing them against many cancer cell lines as they good looking for the one in a million shot that they would randomly discover something that worked.
They knew 99.999 % would not, but it only takes one to potentially be the next major cancer treatment advance and help millions of people.
I think you make some great points. Like you, I do not look at or like to categorize treatments as being “conventional” or “alternative” but what works and does not works. If there is evidence that a therapy works, then I am take an interest in it and see if it something that I could use.
Too often with alternative therapies the evidence to support the therapy claims just does exist or does not stand up to scientific peer review, so I would have to have “faith” to go down that path.
Like Lev, I see sometimes there are alternative therapies that may have some effectiveness, but then are they better than other therapies? Again I look at what works and what does not work and I would rack and stack all options to see which is the best. I would not pursue a therapy just because it is “alternative” and fits in with my belief system, it has to be better than the other options available to me.
It is also a myth that the pharmaceutical industry does not look to nature for natural compounds as potential cures for diseases and cancer because they cannot make money on it, they can.
Lev’s example of Taxol is a classic case I remember hearing about many years ago. Taxol was first made from the bark of the Pacific yew tree. It took the bark of an entire tree to make a treatment killing the tree. This made the drug very expensive and constrained supply. Eventually they learned how to synthesize the active ingredient in the bark so they no longer have to harvest bark from trees to make the drug.
Many years ago I saw a report, on 60 Minutes if I remember, on how there are several major pharmaceutical companies trying to test as many natural compounds from the Amazon forest for anti-cancer properties before they are gone forever.
They had teams down there collecting as much as they could then mass testing them against many cancer cell lines as they good looking for the one in a million shot that they would randomly discover something that worked.
They knew 99.999 % would not, but it only takes one to potentially be the next major cancer treatment advance and help millions of people.
-
Eric Hofacket - Name: Eric H
- When were you/they diagnosed?: 01 April 2011
- Age at diagnosis: 44
Re: Unconventional methods treating multiple myeloma
dee777 wrote:
I do not see where Lev ever said anyone needed his approval to discuss alternative therapies.
This is what Lev said,
I am in agreement with Lev on this. I have already seen a case first hand where the divorced parents had different views of on their daughter's cancer treatment. Mom was strongly biased towards alternative medicine, as it fit in with her ideological beliefs. She “compromised”, though, and agreed to pursue the treatment plan using chemotherapy the oncologist wanted to do.
About three quarters of the way through, the treatment was doing exceptionally well against their daughter's cancer, much better than typical. The doctors wanted to continue and finish the treatment cycle. Mom felt that, since she was doing so well, they could stop treatment now and insisted on putting her daughter on alternative medicine therapy, and that is what happened. It was Dad's turn to “compromise”.
It was not long before the daughter relapsed severely and is not doing well. Why on earth would someone want to abandon a treatment therapy that was working so well to pursue the unknown of an alternative therapy? Does this make any sense?
I believe this is what Lev is cautioning about. If anyone pushes somebody to follow their ideological beliefs and recommendations for what they should do, against therapies and treatments that have science and some proof backing them up, then they take on some responsibility for the consequences and outcome.
"If you need scientific proof then these methods are not for you, but others should be able to discuss them with out your approval."
I do not see where Lev ever said anyone needed his approval to discuss alternative therapies.
This is what Lev said,
It is indeed OK to spread the news about novel methods, supplements or radical alternatives. But I do not believe that it is OK to recommend anyone drop a treatment that is proven to work and go for alternative "clinics" or "doctors" who do not accept evidence, blind tests, etc. etc.
This is not a discussion for or against alternative methods, but for or against evidence based conclusions. “
I am in agreement with Lev on this. I have already seen a case first hand where the divorced parents had different views of on their daughter's cancer treatment. Mom was strongly biased towards alternative medicine, as it fit in with her ideological beliefs. She “compromised”, though, and agreed to pursue the treatment plan using chemotherapy the oncologist wanted to do.
About three quarters of the way through, the treatment was doing exceptionally well against their daughter's cancer, much better than typical. The doctors wanted to continue and finish the treatment cycle. Mom felt that, since she was doing so well, they could stop treatment now and insisted on putting her daughter on alternative medicine therapy, and that is what happened. It was Dad's turn to “compromise”.
It was not long before the daughter relapsed severely and is not doing well. Why on earth would someone want to abandon a treatment therapy that was working so well to pursue the unknown of an alternative therapy? Does this make any sense?
I believe this is what Lev is cautioning about. If anyone pushes somebody to follow their ideological beliefs and recommendations for what they should do, against therapies and treatments that have science and some proof backing them up, then they take on some responsibility for the consequences and outcome.
-
Eric Hofacket - Name: Eric H
- When were you/they diagnosed?: 01 April 2011
- Age at diagnosis: 44
Re: Unconventional methods treating multiple myeloma
Hi Dee,
Although I do not have time to watch the whole 1 hr. 10 min. of the episode you posted, it is interesting that the physician who had myeloma spoke about his disease. He seemed to give an anecdotal account which does not ring 100% true, and I do see that the website appears as if it were an 'informercial'. He just blandly stated that his doctors basically told him to get a bone marrow transplant and radiation and then put his life in order, for he had not long to live.
I did not find this to be in any way as scientific or valuable as learning about myeloma from qualified hematological oncologists who are specialists in their area and who have helped thousands of myeloma patients to live longer, better lives. Also, the mention of a clinic in Tijuana is a 'red flag' as far as I am concerned. I knew people who went for unconventional cancer treatments in far away places who did not survive. They may not have survived here either, but I think that is a moot point.
Best wishes Dee, hope you are getting some expert help from specialists!
Although I do not have time to watch the whole 1 hr. 10 min. of the episode you posted, it is interesting that the physician who had myeloma spoke about his disease. He seemed to give an anecdotal account which does not ring 100% true, and I do see that the website appears as if it were an 'informercial'. He just blandly stated that his doctors basically told him to get a bone marrow transplant and radiation and then put his life in order, for he had not long to live.
I did not find this to be in any way as scientific or valuable as learning about myeloma from qualified hematological oncologists who are specialists in their area and who have helped thousands of myeloma patients to live longer, better lives. Also, the mention of a clinic in Tijuana is a 'red flag' as far as I am concerned. I knew people who went for unconventional cancer treatments in far away places who did not survive. They may not have survived here either, but I think that is a moot point.
Best wishes Dee, hope you are getting some expert help from specialists!
-
Nancy Shamanna - Name: Nancy Shamanna
- Who do you know with myeloma?: Self and others too
- When were you/they diagnosed?: July 2009
Re: Unconventional methods treating multiple myeloma
Wow, that is what you got from that? Just amazing, I have no words.
Re: Unconventional methods treating multiple myeloma
Hi Dee77,
For what it's worth, I watched the myeloma patient segment of the video, and some other sections. I also watched the "Intro" video on one of Ty Bollinger's websites. Seeing him interview Stanley Burzynski as an example of a doctor successfully treating cancer patients concerned me. Burzynski has been in and out of trouble with the FDA for years and was the subject of a scathing investigative report in USA Today last year.
Nevertheless, each of us has to make our own choices about how we want to be treated. I wish you well in whatever treatment direction you take. But I have largely the same reaction as Nancy. I elect to put my trust in science rather than anecdotes.
Mike
For what it's worth, I watched the myeloma patient segment of the video, and some other sections. I also watched the "Intro" video on one of Ty Bollinger's websites. Seeing him interview Stanley Burzynski as an example of a doctor successfully treating cancer patients concerned me. Burzynski has been in and out of trouble with the FDA for years and was the subject of a scathing investigative report in USA Today last year.
Nevertheless, each of us has to make our own choices about how we want to be treated. I wish you well in whatever treatment direction you take. But I have largely the same reaction as Nancy. I elect to put my trust in science rather than anecdotes.
Mike
-
mikeb - Name: mikeb
- Who do you know with myeloma?: self
- When were you/they diagnosed?: 2009 (MGUS at that time)
- Age at diagnosis: 55
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