Steve Jobs is the poster child for somebody who tried alternative cancer treatments and died as a result. He had a rare, very treatable form of pancreatic cancer. Against doctors wishes (he had access to any doctor on the planet) he opted for a berry diet and meditation. 6 months later the cancer had progressed to a terminal cancer.
I'm for eating healthy and all, but to live in the USA and not get the most current western treatment for cancer seems short sighted and naive. There are many educated multiple myeloma patients living in other parts of the world who would kill to have access to the treatments we get in the US.
As for me, I was diagnosed in 2009. I have tried to eat a healthy diet, but I find it harder to keep my will power, so my diet is actually worse than it was before diagnosis. I eat too much fast food (those onion rings are soooo good--especially with a chocolate shake). I used to skip dessert, but not now. I do try to eat some fruits and veggies everyday. I stay sort of active, but not as much as before.
Here I am 4 1/2 years later, 2 stem cells transplants, Rev, Velcade etc, etc and my numbers are stable and I feel pretty good.
I also notice that none of the resident doctors have chimed in on this string.
I only point this out in the hopes that a new patient does not take these alternative ideas to heart.
Forums
Re: Diet, dairy and multiple myeloma
To be clear, with an aggressive blood cancer like myeloma, I would personally not do just strictly alternative. I think the wave of the future in cancer treatment is integrative treatment, combing the best of targeted conventional medicine with the best of alternative. I am stable with an aggressive form of myeloma because of conventional treatment, but I am also adding in diet and those supplements that may target myeloma cell growth and also boost my overall immune system.
Even Dr. Gonzales has many of his highly aggressive leukemia patients under conventional chemo to get stabilized before starting his program. Ideally I would love to find an integrated oncologist who followed both protocols (with the emphasis on targeted chemo to reduce toxicity and resistance). I am happy to see Dee responding so well.
Even Dr. Gonzales has many of his highly aggressive leukemia patients under conventional chemo to get stabilized before starting his program. Ideally I would love to find an integrated oncologist who followed both protocols (with the emphasis on targeted chemo to reduce toxicity and resistance). I am happy to see Dee responding so well.
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SVBriggs
Re: Diet, dairy and multiple myeloma
These are very difficult conversations for us to discuss because diet, exercise, alternative therapies and like issues are very personal. From my perspective, most of the data supporting one over another can be confusing and difficult to interpret and the true answers are unknowns. In fact, a recent article was published in JAMA (Mitka, JAMA 2014) suggests that there is no benefit in vitamin and mineral use for well nourished adults. So as you can see there is a lot controversy around these issues.
Further, there is a lot of additional cost to patients for these generally unproven modalities (the drugs we give are expensive enough). For physicians, we are biased by what we know (are taught, read, test and experience) and what we can control (your therapies and supportive care).
However, diet, exercise, supplements, and alternative therapies are also a critical means for patients to have control of an aspect of their given therapy/life. For the most part our patients are, in a sense, controlled by the therapies that we prescribe as well as by all the labs and visits that are necessary for monitoring disease, toxicities etc. To this end, diet exercise, diet, supplements, alternative therapies (or lack there of) are something that you all can control.
I do not provide my patients with strict guidelines for diet and/or exercise - this includes vitamins and the like. However, it is important that we are judicious in the choices we make as doctors and patients so that we do not negatively impact the care you are receiving.
So please be careful in the decisions you make beyond what we are trying to provide. Please always let us know. I am not saying we will agree; in the end we are your navigators - you are the captains of your ship. But our vocation is to do the best we can based on the most compelling data and our individual and collective experience.
Further, there is a lot of additional cost to patients for these generally unproven modalities (the drugs we give are expensive enough). For physicians, we are biased by what we know (are taught, read, test and experience) and what we can control (your therapies and supportive care).
However, diet, exercise, supplements, and alternative therapies are also a critical means for patients to have control of an aspect of their given therapy/life. For the most part our patients are, in a sense, controlled by the therapies that we prescribe as well as by all the labs and visits that are necessary for monitoring disease, toxicities etc. To this end, diet exercise, diet, supplements, alternative therapies (or lack there of) are something that you all can control.
I do not provide my patients with strict guidelines for diet and/or exercise - this includes vitamins and the like. However, it is important that we are judicious in the choices we make as doctors and patients so that we do not negatively impact the care you are receiving.
So please be careful in the decisions you make beyond what we are trying to provide. Please always let us know. I am not saying we will agree; in the end we are your navigators - you are the captains of your ship. But our vocation is to do the best we can based on the most compelling data and our individual and collective experience.
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Dr. Ken Shain - Name: Ken Shain, M.D., Ph.D.
Beacon Medical Advisor
Re: Diet, dairy and multiple myeloma
Sorry I am not able to attach a file with the article I referred to. For the record, I am not picking sides.
Here is the reference, link, and introduction:
Mitka, JAMA Feb 5, 2014 Vol 311 p454,
http://jama.jamanetwork.com/article.aspx?articleid=1820428
"The past year has been a tough one for proponents of long-term use of vitamin and mineral supplements for chronic disease prevention. New findings add to the growing body of evidence suggesting that vitamin and mineral supplements do not provide benefit to individuals in the general public hoping to ward off chronic diseases. In addition, some recent studies have cautioned that excessive intake of certain supplements may be associated with an increased risk of cancer or heart disease."
Here is the reference, link, and introduction:
Mitka, JAMA Feb 5, 2014 Vol 311 p454,
http://jama.jamanetwork.com/article.aspx?articleid=1820428
"The past year has been a tough one for proponents of long-term use of vitamin and mineral supplements for chronic disease prevention. New findings add to the growing body of evidence suggesting that vitamin and mineral supplements do not provide benefit to individuals in the general public hoping to ward off chronic diseases. In addition, some recent studies have cautioned that excessive intake of certain supplements may be associated with an increased risk of cancer or heart disease."
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Dr. Ken Shain - Name: Ken Shain, M.D., Ph.D.
Beacon Medical Advisor
Re: Diet, dairy and multiple myeloma
Thank you Dr. Shain for being brave enough to post!
When my sister in law went to Tijuana to have her teeth pulled to "rid her of the toxic mercury in her fillings" to cure her stage 4 lung cancer, I decided to not be so quiet about my aversion and anger towards some of this alternative therapy. She spent her last 6 months, not with her 2 year old baby but instead, going to alternative clinic after alternative clinic. The first two months after diagnosis, she lost 25 pounds because a quack convinced her to not eat meat (and he also sold her a water de-ionizing machine). This weight loss most likely sped up her death by a few months.
This "lifestyle" leads some people to believe vaccines are dangerous. Recently we had the first baby die of whooping cough in California in a long time. It is no accident the number of new cases of whooping cough are higher in the more educated areas of California where, for some reason, education can mean a political point of view that "Big Pharma" is evil. This distrust leads to irrational and dangerous decisions.
As myeloma patients who always get our flu shots, we are still more susceptible to catching the flu from those that refuse to get vaccinated. So in our cases, people who refuse to be vaccinated are directly increasing our chances of catching and dying from the flu!
When one decides to engage in one of these alternative therapies while still taking chemo, they run the risk of deactivating or otherwise interfering with the drug and not even knowing it. ie. green tea with Velcade. Even your multiple myeloma specialist won't know for sure. My multiple myeloma friend was buying $300/month worth of "special" mushrooms while on mainstream therapies. Who knows how these mushrooms interacted with Revlimid or Velcade.
Sorry, but this topic ticks me off. But I owe it to my sister in law to vent once in awhile.
When my sister in law went to Tijuana to have her teeth pulled to "rid her of the toxic mercury in her fillings" to cure her stage 4 lung cancer, I decided to not be so quiet about my aversion and anger towards some of this alternative therapy. She spent her last 6 months, not with her 2 year old baby but instead, going to alternative clinic after alternative clinic. The first two months after diagnosis, she lost 25 pounds because a quack convinced her to not eat meat (and he also sold her a water de-ionizing machine). This weight loss most likely sped up her death by a few months.
This "lifestyle" leads some people to believe vaccines are dangerous. Recently we had the first baby die of whooping cough in California in a long time. It is no accident the number of new cases of whooping cough are higher in the more educated areas of California where, for some reason, education can mean a political point of view that "Big Pharma" is evil. This distrust leads to irrational and dangerous decisions.
As myeloma patients who always get our flu shots, we are still more susceptible to catching the flu from those that refuse to get vaccinated. So in our cases, people who refuse to be vaccinated are directly increasing our chances of catching and dying from the flu!
When one decides to engage in one of these alternative therapies while still taking chemo, they run the risk of deactivating or otherwise interfering with the drug and not even knowing it. ie. green tea with Velcade. Even your multiple myeloma specialist won't know for sure. My multiple myeloma friend was buying $300/month worth of "special" mushrooms while on mainstream therapies. Who knows how these mushrooms interacted with Revlimid or Velcade.
Sorry, but this topic ticks me off. But I owe it to my sister in law to vent once in awhile.
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Stann
Re: Diet, dairy and multiple myeloma
Stann wrote:Steve Jobs is the poster child for somebody who tried alternative cancer treatments and died as a result. He had a rare, very treatable form of pancreatic cancer. Against doctors wishes (he had access to any doctor on the planet) he opted for a berry diet and meditation. 6 months later the cancer had progressed to a terminal cancer.
I'm for eating healthy and all, but to live in the USA and not get the most current western treatment for cancer seems short sighted and naive. There are many educated multiple myeloma patients living in other parts of the world who would kill to have access to the treatments we get in the US.
As for me, I was diagnosed in 2009. I have tried to eat a healthy diet, but I find it harder to keep my will power, so my diet is actually worse than it was before diagnosis. I eat too much fast food (those onion rings are soooo good--especially with a chocolate shake). I used to skip dessert, but not now. I do try to eat some fruits and veggies everyday. I stay sort of active, but not as much as before.
Here I am 4 1/2 years later, 2 stem cells transplants, Rev, Velcade etc, etc and my numbers are stable and I feel pretty good.
I also notice that none of the resident doctors have chimed in on this string.
I only point this out in the hopes that a new patient does not take these alternative ideas to heart.
THANK YOU STANN! I've been watching this thread and I was trying to figure out a way to chime in without ruffling feathers. You said everything I wanted to say and you did it well. Most especially, the last line. That was my biggest concern.
If it were not for "Big Pharma" and current medical technology, I would no longer be here. I venture a guess that most of us would not be here.
I was interested in alternative therapies long before my diagnosis simply because I found some of them to be fascinating. However, when it comes to treating a life threatening illness, I choose not to gamble.
Like you, I'm not against a healthy lifestyle. Not at all. It makes perfect sense if one can do it. not all can. Again, like you. I cannot.
Thanks again for chiming in Stann. You did it perfectly.
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Guitarnut - Name: Scott Hansgen
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Sept 2011
- Age at diagnosis: 47
Re: Diet, dairy and multiple myeloma
Not to pile on, but I Googled Dr. Gonzalez and...wow..
In August 2009 his recommended regimen was reported to be less effective compared to chemotherapy. Patients receiving the Gonzalez protocol did worse than patients on conventional chemotherapy, dying three times faster than those receiving conventional chemotherapy and reporting significantly worse quality of life.[8]
Gonzalez "had to pay $2.5 million in damages to a patient he wrongly claimed to have cured" of cancer.[16][17] The former patient had been diagnosed with uterine cancer but "Gonzalez discouraged her from following through on her cancer specialist's advice, instead recommending dietary supplements and frequent coffee enemas"
A review article from the Journal of Clinical Gastroenterology is cited that notes the clinical efficacy of coffee enemas has not been proven and the therapy is associated with severe adverse effects previously described in a few case reports.
I could have filled pages with examples and lawsuits against this guy.
It is irrational to follow a doctors advice who rejects western medicine, does not approve of peer reviewed journals (the foundation of all science) and follows the research of an orthodontist.
In August 2009 his recommended regimen was reported to be less effective compared to chemotherapy. Patients receiving the Gonzalez protocol did worse than patients on conventional chemotherapy, dying three times faster than those receiving conventional chemotherapy and reporting significantly worse quality of life.[8]
Gonzalez "had to pay $2.5 million in damages to a patient he wrongly claimed to have cured" of cancer.[16][17] The former patient had been diagnosed with uterine cancer but "Gonzalez discouraged her from following through on her cancer specialist's advice, instead recommending dietary supplements and frequent coffee enemas"
A review article from the Journal of Clinical Gastroenterology is cited that notes the clinical efficacy of coffee enemas has not been proven and the therapy is associated with severe adverse effects previously described in a few case reports.
I could have filled pages with examples and lawsuits against this guy.
It is irrational to follow a doctors advice who rejects western medicine, does not approve of peer reviewed journals (the foundation of all science) and follows the research of an orthodontist.
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stann
Re: Diet, dairy and multiple myeloma
Let me start
Stann
Steve Jobs was NOT doing alternative therapy for his colon cancer. He was a Buddhist and ate vegan for RELIGIOUS reasons. I don't know what else he ate, he was not seeing a naturopath doctor but a CONVENTIONAL doctor and had surgery and other CONVENTIONAL treatment. When people heard he ate vegan they ASSUMED he was doing alternative but actually turned alternative down and wanted to be treated conventionally. End of that argument.
Also, what you googles was on Wikipedia and written by people against alternative therapies. A lot of untruth. The trials showed his treatment was much more effective then the chemotherapy and you need to look up the results of the trail.
The lady the case was referred to actually quit his therapy and went conventional but died while doing it. His attorney and insurance carrier did not want to fight it and settled at 50% fault. He then sued his insurance and attorney and they settled for a lot of money because they were found at fault as they did not show the proof they had of the conventional treatment she was on and what IT did to her and caused her death. She only did his treatment for about 3 months.
PLEASE tell me the other lawsuits. I don't know of any. Don't bash with out the facts.
Stann
Steve Jobs was NOT doing alternative therapy for his colon cancer. He was a Buddhist and ate vegan for RELIGIOUS reasons. I don't know what else he ate, he was not seeing a naturopath doctor but a CONVENTIONAL doctor and had surgery and other CONVENTIONAL treatment. When people heard he ate vegan they ASSUMED he was doing alternative but actually turned alternative down and wanted to be treated conventionally. End of that argument.
Also, what you googles was on Wikipedia and written by people against alternative therapies. A lot of untruth. The trials showed his treatment was much more effective then the chemotherapy and you need to look up the results of the trail.
The lady the case was referred to actually quit his therapy and went conventional but died while doing it. His attorney and insurance carrier did not want to fight it and settled at 50% fault. He then sued his insurance and attorney and they settled for a lot of money because they were found at fault as they did not show the proof they had of the conventional treatment she was on and what IT did to her and caused her death. She only did his treatment for about 3 months.
PLEASE tell me the other lawsuits. I don't know of any. Don't bash with out the facts.
Re: Diet, dairy and multiple myeloma
Dr. Shain,
The diets Dr. Gonzalez puts his patients on are not used to treat the cancer. It is to help the body to work better. However, it does help in creating an environment the cancer does not want to grow.
No deaths have been recorded from vitamins and minerals. Most people are NOT well nourished. We are fat but starving. The lack of nutrition is causing cancer.
Doctors have very limited studies in nutrition.
The diets Dr. Gonzalez puts his patients on are not used to treat the cancer. It is to help the body to work better. However, it does help in creating an environment the cancer does not want to grow.
No deaths have been recorded from vitamins and minerals. Most people are NOT well nourished. We are fat but starving. The lack of nutrition is causing cancer.
Doctors have very limited studies in nutrition.
Last edited by dee777 on Fri Feb 14, 2014 1:40 pm, edited 1 time in total.
Re: Diet, dairy and multiple myeloma
Oh, and by the way Stann, conventional doctors get sued a LOT. You think your doctor has never been sued? That is why they have that very expensive insurance. You act like Dr. Gonzalez is the ONLY one that has been sued. You might be surprised how many times your doctor has been sued.
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