Let's be very clear, Multiple Myeloma still kills. The drugs are extending lives, I will not argue with that. But, no cure.
But I do not just want more time.
By the way Stann, the way you are eating, you may die of something else before the cancer. Good luck with that.
Forums
Re: Diet, dairy and multiple myeloma
I agree with Stann and Guitarnut. I have been watching the threads related to Dr. Gonzalez and alternative therapies and have been reluctant to say anything because I did not want to offend. However, for the sake of newly diagnosed patients looking for answers, I believe it is right to bring up the points that Stann mentions. Not all therapies are created equal. Everyone has a right to their choice of treatment, but if you are looking for treatments based on science and peer reviewed studies and journals, then conventional treatment is the way to go. (Although I wouldn't discount some alternative therapies working in conjunction with conventional). I have yet to see such a thing supporting Dr. Gonzalez's procedures. Anecdotal stories about people being cured and theories as to why toxins may have caused my myeloma need to be documented in order for me to consider it legitimate. I was very alarmed when I read that Dr. Gonzalez uses hair analysis to determine the supplements a person needs. Science rejects this idea.
http://www.quackwatch.com/01QuackeryRelatedTopics/hair.html
I'm also concerned that a doctor doesn't measure the biomarkers of a disease. I have normal blood counts and by these you could assume that I'm fine. I know I have active myeloma based on my M-spike and my free light chains. The new drug therapies that have come out as well as the ones in the pipeline right now are nothing short of awe inspiring. I'm certain that if I had just gone to alternative therapies when I was diagnosed 10 months ago, I'd be dead by now. In the 1970s, only 24% of patients survived 5 years. We are doing much better through the innovations that have taken place. I think this forum is a good place to share ideas and to learn from others. But I also think we cannot proceed along and not speak our mind about what we feel to be helpful or not helpful. That's what a forum is for. Dee, I hope your choice works well for you. We are all under a lot of stress due to this crazy disease. However, I'm not sure why you feel the need to defend this approach to others so vehemently. I would like to learn that your myeloma numbers are down to zero (or at least substantially reduced) before you cite this treatment as a success. I think that's fair to new people just beginning to look at this forum. Right now, it's speculative and wishful and not yet supported by the norms of science. But you have a right to choose that and talk about it, just as I have a right to state my opinion. I believe people here have been respectful of you and your claims. I don't find it helpful in the tone that you are taking with others that disagree with you.
http://www.quackwatch.com/01QuackeryRelatedTopics/hair.html
I'm also concerned that a doctor doesn't measure the biomarkers of a disease. I have normal blood counts and by these you could assume that I'm fine. I know I have active myeloma based on my M-spike and my free light chains. The new drug therapies that have come out as well as the ones in the pipeline right now are nothing short of awe inspiring. I'm certain that if I had just gone to alternative therapies when I was diagnosed 10 months ago, I'd be dead by now. In the 1970s, only 24% of patients survived 5 years. We are doing much better through the innovations that have taken place. I think this forum is a good place to share ideas and to learn from others. But I also think we cannot proceed along and not speak our mind about what we feel to be helpful or not helpful. That's what a forum is for. Dee, I hope your choice works well for you. We are all under a lot of stress due to this crazy disease. However, I'm not sure why you feel the need to defend this approach to others so vehemently. I would like to learn that your myeloma numbers are down to zero (or at least substantially reduced) before you cite this treatment as a success. I think that's fair to new people just beginning to look at this forum. Right now, it's speculative and wishful and not yet supported by the norms of science. But you have a right to choose that and talk about it, just as I have a right to state my opinion. I believe people here have been respectful of you and your claims. I don't find it helpful in the tone that you are taking with others that disagree with you.
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Joy - Name: Joy
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: May 2013
- Age at diagnosis: 52
Re: Diet, dairy and multiple myeloma
I defended what was said that was false information. I corrected the facts. Patients are monitored Joy. Hair analysis was used at one time even conventionally, now doctors use blood tests. I don't think you can decide a diet for some one by just their blood tests. You don't have to agree with alternative therapies, how ever to put our false information is not right either and I will correct the false information no different then some one would correct me if I made false statements about conventional treatments.
I am early in the treatment, but I can share what I am doing no different then others are sharing what they are doing drug wise yet still have cancer. The fact is we all still have cancer, remission in this disease does not mean there is zero cancer, just means they can not detect it. It is just not people in remission sharing what they are doing.
I still have cancer, however it is stabilized. I never said I was cured. From what I am reading from the side effects the drugs are giving some people my life is much better. I have no limits. That is worth saying isn't it? Some people with the 4;14 translocation and 13 deletion are having a tough time with treatments and the treatments are not extending their lives by much. I see the average survival is 2 years, though some are living 4 years with the new drugs. Some don't have a whole lot of quality of life. That really matters, to me at least. I am homeschooling, working a farm, do all the house work, fix the meals, drive, no limits. Playing my flute. Quality of life is very good. You don't think that is worth shouting about? I am not saying this is for everyone. You have to do what you believe in, I just don't go for the bashing of alternative therapies with lies.
It sounds like I need to shut up because God forbid some one might read I am a quality of life and they may be interested in that and even when I get to the point no cancer is detected there will be still arguments that maybe I didn't really have cancer, maybe this or that but it couldn't be the Dr. Gonzalez protocol.
I am early in the treatment, but I can share what I am doing no different then others are sharing what they are doing drug wise yet still have cancer. The fact is we all still have cancer, remission in this disease does not mean there is zero cancer, just means they can not detect it. It is just not people in remission sharing what they are doing.
I still have cancer, however it is stabilized. I never said I was cured. From what I am reading from the side effects the drugs are giving some people my life is much better. I have no limits. That is worth saying isn't it? Some people with the 4;14 translocation and 13 deletion are having a tough time with treatments and the treatments are not extending their lives by much. I see the average survival is 2 years, though some are living 4 years with the new drugs. Some don't have a whole lot of quality of life. That really matters, to me at least. I am homeschooling, working a farm, do all the house work, fix the meals, drive, no limits. Playing my flute. Quality of life is very good. You don't think that is worth shouting about? I am not saying this is for everyone. You have to do what you believe in, I just don't go for the bashing of alternative therapies with lies.
It sounds like I need to shut up because God forbid some one might read I am a quality of life and they may be interested in that and even when I get to the point no cancer is detected there will be still arguments that maybe I didn't really have cancer, maybe this or that but it couldn't be the Dr. Gonzalez protocol.
Re: Diet, dairy and multiple myeloma
By the way there are peer view studies on pancreatic enzymes. In Europe they use the enzymes along with conventional treatments because they know it works.
Re: Diet, dairy and multiple myeloma
I think a lot of folks have been resistant to chime in for the risk of offending anyone and the overall tone of this thread. But I agree that there should be a constructive dialogue on this topic, especially so that newly diagnosed patients investigating treatment paths can hear all sides of the story in a civil and respectful manner. At the end of the day, everyone has the right to make their own choice and everyone's decision should be respected by others. I would therefore humbly suggest that some of these responses get toned down a bit and that they not be quite so personal, nor defensive. After all, it is a great topic to discuss.
I do believe there is a place for alternative treatments, and like Joy, I believe there is also a place for using those concepts as part of an integrative approach when undergoing conventional treatment.
I personally am taking a LOT of supplements (based on TAB's approach) and I am now experimenting with fenofibrate (not sure if you would call that alternative therapy, but it certainly isn't a tried and proven treatment). But I am also smoldering, and not high risk to boot. I therefore personally believe since I am not suffering from any CRAB issues, that this circumstance puts me in a fairly unique position to safely try alternative approaches since I am not doing it at the expense of any conventional treatment. I am hopeful that my efforts will keep my disease at bay, but I am also preparing for and researching my "conventional" choices in the event I become symptomatic.
As I have also said before in some earlier posts, I personally believe there is a tipping point when one becomes symptomatic and that you must then embrace the conventional approaches, whether that be through the use of chemo or chemo combined with some form of transplant (I don't generally believe in auto transplants, but that isn't the point I'm trying to make here). And, again, I personally believe that there is a place to augment those conventional approaches with alternative approaches. That is the choice and philosophy I have developed based on my research and my own circumstances. Dee has made her choice and I wish her all the best (and I'm also incredibly curious to see how things work out for her).
Lastly, this thread did start with the subject of the China Study, which I am now reading. I personally find the study to be fairly compelling so far, but I had already embraced many of the major conclusions of the study before starting to read it
For the sake of balance, and since Dee brought it up, you can easily find counterclaims to the China Study's results by simply googling on "China Study flawed" or "China Study debunked". I am currently foregoing dairy between lab tests and I will be curious to see if this will have an impact on my FLCs or not. It may be that is has no effect or maybe my numbers may bump up, like Dee's did when she went vegan for awhile.
Enjoy the weekend.
I do believe there is a place for alternative treatments, and like Joy, I believe there is also a place for using those concepts as part of an integrative approach when undergoing conventional treatment.
I personally am taking a LOT of supplements (based on TAB's approach) and I am now experimenting with fenofibrate (not sure if you would call that alternative therapy, but it certainly isn't a tried and proven treatment). But I am also smoldering, and not high risk to boot. I therefore personally believe since I am not suffering from any CRAB issues, that this circumstance puts me in a fairly unique position to safely try alternative approaches since I am not doing it at the expense of any conventional treatment. I am hopeful that my efforts will keep my disease at bay, but I am also preparing for and researching my "conventional" choices in the event I become symptomatic.
As I have also said before in some earlier posts, I personally believe there is a tipping point when one becomes symptomatic and that you must then embrace the conventional approaches, whether that be through the use of chemo or chemo combined with some form of transplant (I don't generally believe in auto transplants, but that isn't the point I'm trying to make here). And, again, I personally believe that there is a place to augment those conventional approaches with alternative approaches. That is the choice and philosophy I have developed based on my research and my own circumstances. Dee has made her choice and I wish her all the best (and I'm also incredibly curious to see how things work out for her).
Lastly, this thread did start with the subject of the China Study, which I am now reading. I personally find the study to be fairly compelling so far, but I had already embraced many of the major conclusions of the study before starting to read it
For the sake of balance, and since Dee brought it up, you can easily find counterclaims to the China Study's results by simply googling on "China Study flawed" or "China Study debunked". I am currently foregoing dairy between lab tests and I will be curious to see if this will have an impact on my FLCs or not. It may be that is has no effect or maybe my numbers may bump up, like Dee's did when she went vegan for awhile. Enjoy the weekend.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Diet, dairy and multiple myeloma
Multibilly, the only problem is that doing both alternative and conventional is fine and a choice, but one can not expect the same results combining both. As some conventional doctors believe some herbs or supplements can interfere with drugs, the drugs can interfere with body's ability to heal. So some like me are only doing alternative.
Re: Diet, dairy and multiple myeloma
Dee,
I read Steve Job's biography. Yes he was a vegan etc, but he stated he regretted spending the 6 months on a berry diet that he used to "fight" his pancreatic cancer (not colon cancer).
I agree with you that using lawsuits for my argument is not a fair. But the things IN the lawsuits were what I was pointing too. (coffee enemas and such).
If you find one myeloma specialist who would use alternative therapies and not western medicine to treat his own children (if they were diagnosed with multiple myeloma), I'd eat my hat. (baseball hat, not a cowboy hat).
Have a nice weekend and...Happy Valentines Day!
I read Steve Job's biography. Yes he was a vegan etc, but he stated he regretted spending the 6 months on a berry diet that he used to "fight" his pancreatic cancer (not colon cancer).
I agree with you that using lawsuits for my argument is not a fair. But the things IN the lawsuits were what I was pointing too. (coffee enemas and such).
If you find one myeloma specialist who would use alternative therapies and not western medicine to treat his own children (if they were diagnosed with multiple myeloma), I'd eat my hat. (baseball hat, not a cowboy hat).
Have a nice weekend and...Happy Valentines Day!
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stann
Re: Diet, dairy and multiple myeloma
Stann, I plan to stay away as far as possible from any multiple myeloma specialists. So I don't think I would be asking that question. I did have my primary tell my he would never do conventional medicine if he ever got cancer. And I didn't ask him. He said he supported me 100% and was happy to have me at his practice.
And yes, Steve did have pancreatic cancer, my boo boo. However, he never consulted with a naturopath doctor is the point and I am not sure what he was doing. He did towards the end have surgery and conventional treatment. He wasn't following any type of alternative protocols that I could tell. But so many people throw that up about Steve and he did alternative therapy and look what happened to him. He didn't. I mean really, what doctor out there is promoting a berry diet for cancer? He did call and talk to Dr. Gonzalez but never did his protocol or even have an appointment with him as he told Dr. Gonzalez he didn't really trust alternative doctors and trusted the white coats. It does sound like he tried to treat himself with his own ideas for awhile, hence perhaps the berry diet. He was a very smart man and probably felt he was smart enough to treat his own cancer.
Thank you for the Valentine's Day wishes, hope you are having a great day too!
And yes, Steve did have pancreatic cancer, my boo boo. However, he never consulted with a naturopath doctor is the point and I am not sure what he was doing. He did towards the end have surgery and conventional treatment. He wasn't following any type of alternative protocols that I could tell. But so many people throw that up about Steve and he did alternative therapy and look what happened to him. He didn't. I mean really, what doctor out there is promoting a berry diet for cancer? He did call and talk to Dr. Gonzalez but never did his protocol or even have an appointment with him as he told Dr. Gonzalez he didn't really trust alternative doctors and trusted the white coats. It does sound like he tried to treat himself with his own ideas for awhile, hence perhaps the berry diet. He was a very smart man and probably felt he was smart enough to treat his own cancer.
Thank you for the Valentine's Day wishes, hope you are having a great day too!
Re: Diet, dairy and multiple myeloma
Dee 777,
just want to let you know that I'm very grateful that you have the courage to speak out about the alternative protocol you are following. I believe it is surely inspiring for many, even when following conventional treatment because the proteolytic enzymes and thoughts about the best diet to follow to support one's system in healing as much as possible is certainly helpful. Of course its a very personal decision for each one which treatment protocol one wants to follow, and I'm wishing for each one the best results possible. But its essential to say the truth and stick to the facts.
Are there any other general guidelines for multiple myeloma patients which Dr. Gonzalez mentions to you about which foods to avoid and which to include, apart of including meat and animal fats? We are from Costa Rica and we are like you not following the conventional path, stopped the drugs some months ago. We are including Wobenzym N (since I can get that here) in high doses as recommended for cancer in between meals, taking also curcumin along with fish oil, resveratrol, sunshine for vitamin D since its abundant here in the tropics, milk thistle, and some other supplements mostly in natural form. We juice daily and keep a diet based on organically grown products. So far everything is working very well, and the hematologist here is doubtful, but at least open and curious to see what happens, and accompanies us with ordering and evaluating the monthly tests they do here. So far they have been very encouraging.
So if you could explain some more details about general recommendations Dr. Gonzalez has for multiple myeloma patients, we would be very interested. We know most is very individualized according to one's metabolic type. But we also don't want to make any grave mistakes until we might one day be able to afford the trip to the US.
Thanks!
just want to let you know that I'm very grateful that you have the courage to speak out about the alternative protocol you are following. I believe it is surely inspiring for many, even when following conventional treatment because the proteolytic enzymes and thoughts about the best diet to follow to support one's system in healing as much as possible is certainly helpful. Of course its a very personal decision for each one which treatment protocol one wants to follow, and I'm wishing for each one the best results possible. But its essential to say the truth and stick to the facts.
Are there any other general guidelines for multiple myeloma patients which Dr. Gonzalez mentions to you about which foods to avoid and which to include, apart of including meat and animal fats? We are from Costa Rica and we are like you not following the conventional path, stopped the drugs some months ago. We are including Wobenzym N (since I can get that here) in high doses as recommended for cancer in between meals, taking also curcumin along with fish oil, resveratrol, sunshine for vitamin D since its abundant here in the tropics, milk thistle, and some other supplements mostly in natural form. We juice daily and keep a diet based on organically grown products. So far everything is working very well, and the hematologist here is doubtful, but at least open and curious to see what happens, and accompanies us with ordering and evaluating the monthly tests they do here. So far they have been very encouraging.
So if you could explain some more details about general recommendations Dr. Gonzalez has for multiple myeloma patients, we would be very interested. We know most is very individualized according to one's metabolic type. But we also don't want to make any grave mistakes until we might one day be able to afford the trip to the US.
Thanks!
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MMau58 - Name: MMau58
- Who do you know with myeloma?: ex-husband
- When were you/they diagnosed?: July 2013
- Age at diagnosis: 58
Re: Diet, dairy and multiple myeloma
Hello,
I have a question for Dee777.
I am newly diagnosed. I read through this thread with much interest and I did not see where you stated your chromosome abnormalities. In all fairness, I think that is important information to share in this thread. My reason is thus: if you have a singe trisomy, an extra chromosome, you have very low risk disease and maybe you have a really great immune system keeping it in check right now.
But for someone like me, I have the big brother of abnormalities, the dreaded 17p deletion along with some other alphabet numbers of abnormalities, but I also have a single trisomy, which are the good guys., but not doing me any good right now. From what my specialists explained to me, my disease very quietly started out with that single good guy trisomy but learned to find some nasty friends along the way and also picked up 17p in the dark shadows who now rules the sideshow.
So for someone like me, I have to consider my options, those of which conventional therapies I need to select from if I want to live to see another year. I don't have the luxury to try an alternative approach for 6 months to see what happens.
It is very difficult to read stories without knowing someone's type of disease and I don't mean IgA, there is much more to it than just that. I think your reluctance to share this with us may mean you may not be aware of it. In the end, I do wish you well on your protocol and hope you would do the same for someone like me.
Don't close the door on conventional treatments, you don't know if you may end up needing them some day if your disease quietly escapes your immune system and decides to pick up a few friends along the way; you may want to just keep yourself aware of all of the options. You won't want to start scrambling for information then. Take care.
I have a question for Dee777.
I am newly diagnosed. I read through this thread with much interest and I did not see where you stated your chromosome abnormalities. In all fairness, I think that is important information to share in this thread. My reason is thus: if you have a singe trisomy, an extra chromosome, you have very low risk disease and maybe you have a really great immune system keeping it in check right now.
But for someone like me, I have the big brother of abnormalities, the dreaded 17p deletion along with some other alphabet numbers of abnormalities, but I also have a single trisomy, which are the good guys., but not doing me any good right now. From what my specialists explained to me, my disease very quietly started out with that single good guy trisomy but learned to find some nasty friends along the way and also picked up 17p in the dark shadows who now rules the sideshow.
So for someone like me, I have to consider my options, those of which conventional therapies I need to select from if I want to live to see another year. I don't have the luxury to try an alternative approach for 6 months to see what happens.
It is very difficult to read stories without knowing someone's type of disease and I don't mean IgA, there is much more to it than just that. I think your reluctance to share this with us may mean you may not be aware of it. In the end, I do wish you well on your protocol and hope you would do the same for someone like me.
Don't close the door on conventional treatments, you don't know if you may end up needing them some day if your disease quietly escapes your immune system and decides to pick up a few friends along the way; you may want to just keep yourself aware of all of the options. You won't want to start scrambling for information then. Take care.
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