Hi,
Any of you on special diet to build your immune system to help the fight with multiple myeloma?
~Nisha~
Forums
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Nisha - Who do you know with myeloma?: My Mom
- When were you/they diagnosed?: 13 Sep 2013
- Age at diagnosis: 60
Re: Multiple myeloma diet?
I have not heard of one, but obviously the body needs all the help it can get to fight the disease. I try to watch my weight and eat as healthy as reasonably possible. I haven't gone vegetarian, but i have cut back considerably on animal proteins.
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Wayne K - Name: Wayne
- Who do you know with myeloma?: Myself, my sister who passed in '95
- When were you/they diagnosed?: 03/09
- Age at diagnosis: 70
Re: Multiple myeloma diet?
I am experimenting on myself - sort of like my own clinical trial. I am not arguing this is right for everyone and I am not saying it is even healthy, I just know it is working for me.
It has been 1 1/2 years since my BMT (or SCT). My transplant coordinator had told me the average remission lasts 2-5 years, so I have had a sense that I could not make any plans for the future. My sister sent a link to a book about how to prolong remission. I asked my Oncologist about it (the book said to eat no sugar etc) and he said the research shows that it is not just sugar you should avoid - it is the overall sugar in your blood. He said to that research shows that low carb eating (as in diabetic diet or Atkins) keeps your blood sugar low and steady and that seems to slow the growth of cancer. He said Metformin even shows some promise for prolonging remission.
He told me that March 23, 2014. So, I started trying to eat low carb and trying to learn more about low carb and a "diabetic diet". There were so many conflicting descriptions of what a low carb diabetic diet is that I finally got a blood glucose meter and started checking my own blood about 6-8 times per day. I was really amazed at how my body reacted to carbs - so that gave me more incentive to be careful.
Frankly, it is really difficult to eat low carb, so I started looking online for articles, too - I searched, "blood sugar & cancer" and there were a LOT of articles about how studies show that keeping your blood glucose low can keep the cancer from spreading. In fact, insulin (which your body produces in reaction to eating carbs) seems to act as a fertilizer for cancer cells.
I made it through that first month and was amazed at my blood work on my May 5th appointment. My Creatinine was the lowest it had been since I was diagnosed with cancer. My kappa free light chains were down to what they were over a year ago & the ratio of kappa & lambda was almost exactly 1!
I had been "out of normal range" on 14 different things that are tested monthly in my blood, but 4 of them came into the normal range!
So, I am trying to figure out how to live with this diet. My reports were so good my oncologist said that he would not even see me for 8 weeks - I actually wish he would see at my usual 4 weeks so I could see if I am getting even better or maintaining my blood work report.
It has been 1 1/2 years since my BMT (or SCT). My transplant coordinator had told me the average remission lasts 2-5 years, so I have had a sense that I could not make any plans for the future. My sister sent a link to a book about how to prolong remission. I asked my Oncologist about it (the book said to eat no sugar etc) and he said the research shows that it is not just sugar you should avoid - it is the overall sugar in your blood. He said to that research shows that low carb eating (as in diabetic diet or Atkins) keeps your blood sugar low and steady and that seems to slow the growth of cancer. He said Metformin even shows some promise for prolonging remission.
He told me that March 23, 2014. So, I started trying to eat low carb and trying to learn more about low carb and a "diabetic diet". There were so many conflicting descriptions of what a low carb diabetic diet is that I finally got a blood glucose meter and started checking my own blood about 6-8 times per day. I was really amazed at how my body reacted to carbs - so that gave me more incentive to be careful.
Frankly, it is really difficult to eat low carb, so I started looking online for articles, too - I searched, "blood sugar & cancer" and there were a LOT of articles about how studies show that keeping your blood glucose low can keep the cancer from spreading. In fact, insulin (which your body produces in reaction to eating carbs) seems to act as a fertilizer for cancer cells.
I made it through that first month and was amazed at my blood work on my May 5th appointment. My Creatinine was the lowest it had been since I was diagnosed with cancer. My kappa free light chains were down to what they were over a year ago & the ratio of kappa & lambda was almost exactly 1!
I had been "out of normal range" on 14 different things that are tested monthly in my blood, but 4 of them came into the normal range!
So, I am trying to figure out how to live with this diet. My reports were so good my oncologist said that he would not even see me for 8 weeks - I actually wish he would see at my usual 4 weeks so I could see if I am getting even better or maintaining my blood work report.
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antelope1225 - Name: Cathy1225
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: May 25 2012
- Age at diagnosis: 55
Re: Multiple myeloma diet?
I had been on Atkins for awhile, but have switched over to a "Flexetarian" diet.
(ie. Some occasional animal protein--but mostly a bit of fish and Lots of fruits and vegetables-a few nuts,etc.)
Low level Calcium, Vit D3, and Potassium (99mgs) supps 3x/week. An aspirin with my Revlimid.
My Blood sugars have dropped radically, and so has my weight. (Gradually, but satisfactorily)
Velcade had left me with grade II PN and lots of constipation. Revlimid maintenance continued the Constipation.
I lived on bowel stimulants, formulas, etc.--without much success.
Miralax, et al were just too harsh and irregular.
4 months ago Switched to a Flex diet, supps as above--and voila ! "I'm as regular as rain."
Even after recent Hip surgery and all the Bowel slowing meds (Anesthesia, Benadryl, and narcotic pain meds)--I'm still in much more control of my Bowels/ no longer cramping, etc.
Exercise is now possible. That also helps with Blood Sugars greatly.
Your mileage may vary...good luck.
(ie. Some occasional animal protein--but mostly a bit of fish and Lots of fruits and vegetables-a few nuts,etc.)
Low level Calcium, Vit D3, and Potassium (99mgs) supps 3x/week. An aspirin with my Revlimid.
My Blood sugars have dropped radically, and so has my weight. (Gradually, but satisfactorily)
Velcade had left me with grade II PN and lots of constipation. Revlimid maintenance continued the Constipation.
I lived on bowel stimulants, formulas, etc.--without much success.
Miralax, et al were just too harsh and irregular.
4 months ago Switched to a Flex diet, supps as above--and voila ! "I'm as regular as rain."
Even after recent Hip surgery and all the Bowel slowing meds (Anesthesia, Benadryl, and narcotic pain meds)--I'm still in much more control of my Bowels/ no longer cramping, etc.
Exercise is now possible. That also helps with Blood Sugars greatly.
Your mileage may vary...good luck.
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Rok
Re: Multiple myeloma diet?
Hi Rok
It sounds like you are finding what works for you! Since you are also getting your blood sugar lower and steady, I hope you see the same thing I am seeing as far as my cancer markers. (they are down)
I had C-Diff 4x after I got out of the hospital
and I after the 4th time I started taking a couple of probiotics every day - those also keep me regular. I take Culturelle and one that is like Align - it is available from Sams, Walgreens or Smiths - it is a generic version of Align.
I cant take vitamins or aspirin because of my kidneys.
It is hard to change your way of eating - but when you see good results, it is worth the effort!
It sounds like you are finding what works for you! Since you are also getting your blood sugar lower and steady, I hope you see the same thing I am seeing as far as my cancer markers. (they are down)
I had C-Diff 4x after I got out of the hospital
and I after the 4th time I started taking a couple of probiotics every day - those also keep me regular. I take Culturelle and one that is like Align - it is available from Sams, Walgreens or Smiths - it is a generic version of Align.I cant take vitamins or aspirin because of my kidneys.
It is hard to change your way of eating - but when you see good results, it is worth the effort!
-
antelope1225 - Name: Cathy1225
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: May 25 2012
- Age at diagnosis: 55
Re: Multiple myeloma diet?
I am amazed how little interest there is in my experience with improving my blood work numbers by changing my diet. Just to be clear - I am not selling anything, I am still taking my Revlimid faithfully and this is recommended by my doctor.
I told 2 of my friends who have cancer and they showed no interest, either. I am not sure if it is too much effort or they think this is ridiculous. I am not running to South America and getting stung by bees or some weird treatment.
Here is a link to one of the studies that encouraged me.
I told 2 of my friends who have cancer and they showed no interest, either. I am not sure if it is too much effort or they think this is ridiculous. I am not running to South America and getting stung by bees or some weird treatment.
Here is a link to one of the studies that encouraged me.
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antelope1225 - Name: Cathy1225
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: May 25 2012
- Age at diagnosis: 55
Re: Multiple myeloma diet?
I do not know of any special diet that would improve the immune system beyond eating a normal well balanced diet that doctors and nutritionist recommend for everyone, whether they have cancer or not. I could see how poor dietary habits or following an extreme dieting plan could comprise immune system health.
I am not keen on extreme dieting plans like Atkins, low carb, high carb etc. I find it odd that sometimes people with poor dietary habits to begin with will try these diets looking for some kind improvement in their health. Why not drop the bad diet habit and try eating a normal health diet that nutritionist and doctors recommend first, and see what results you get before jumping onto an extreme or unconventional dieting plan? I never have known anyone who was eating right to begin with start an unconventional diet plan -- they did not feel they needed to.
There is a lot on the Internet about cancer and sugar, but then there is a lot of information on the Internet from respected cancer research institutes such as the Mayo Clinic, MD Andersen, etc, about how sugar increasing cancer growth is an urban myth. All cells need sugar to grow, not just cancer cells. It can be hard to sort out what is reliable information from what is not.
But what does not seem to be an urban myth is that Americans do not eat that well and eat far too much sugar and it would benefit most people’s health to cut back on sugar intake and eat the right kind of sugars and carbs whether they have cancer or not. High sugar consumption's link to diabetes is well established and I have been reading that it is also increasingly being connected to heart disease.
I ride with a cycling group every week and I heard a story last week that caught my attention. Before I started riding with this group, there was rider years ago who was in pretty good shape and used to ride with the group. He started an unconventional diet -- I believe it was a “high carb”, low protein diet -- that was supposed to get some health result that I cannot remember now.
To make a long story short he started having medical problems that sent him to his doctor and other medical specialists. I do not know when he revealed that he was eating this diet but, to make a long story short, he was told that his diet had permanently damaged his heart. He no longer rides with our group. I learned of this story because a member of the group saw this man in Lowes a few weeks ago and he still looked very weak and a shadow of his former self.
This is all anecdotal and is just one individual. I do not place much faith in anecdotal alternative medicine supposed cures of a single individual, so take it for what it is worth.
I am not keen on extreme dieting plans like Atkins, low carb, high carb etc. I find it odd that sometimes people with poor dietary habits to begin with will try these diets looking for some kind improvement in their health. Why not drop the bad diet habit and try eating a normal health diet that nutritionist and doctors recommend first, and see what results you get before jumping onto an extreme or unconventional dieting plan? I never have known anyone who was eating right to begin with start an unconventional diet plan -- they did not feel they needed to.
There is a lot on the Internet about cancer and sugar, but then there is a lot of information on the Internet from respected cancer research institutes such as the Mayo Clinic, MD Andersen, etc, about how sugar increasing cancer growth is an urban myth. All cells need sugar to grow, not just cancer cells. It can be hard to sort out what is reliable information from what is not.
But what does not seem to be an urban myth is that Americans do not eat that well and eat far too much sugar and it would benefit most people’s health to cut back on sugar intake and eat the right kind of sugars and carbs whether they have cancer or not. High sugar consumption's link to diabetes is well established and I have been reading that it is also increasingly being connected to heart disease.
I ride with a cycling group every week and I heard a story last week that caught my attention. Before I started riding with this group, there was rider years ago who was in pretty good shape and used to ride with the group. He started an unconventional diet -- I believe it was a “high carb”, low protein diet -- that was supposed to get some health result that I cannot remember now.
To make a long story short he started having medical problems that sent him to his doctor and other medical specialists. I do not know when he revealed that he was eating this diet but, to make a long story short, he was told that his diet had permanently damaged his heart. He no longer rides with our group. I learned of this story because a member of the group saw this man in Lowes a few weeks ago and he still looked very weak and a shadow of his former self.
This is all anecdotal and is just one individual. I do not place much faith in anecdotal alternative medicine supposed cures of a single individual, so take it for what it is worth.
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Eric Hofacket - Name: Eric H
- When were you/they diagnosed?: 01 April 2011
- Age at diagnosis: 44
Re: Multiple myeloma diet?
Antelope 1225 I don't know that it is a lack of interest as much as a lack of information. I read your posts with interest, but I don't know how or if they would be of help for me. I don't normally have a problem with blood sugars, at least I don't think I do, and I don't know what figures you are working with.
Maybe if we knew what levels of blood sugars you're working with we could better know if it might be something useful to some of us.
Maybe if we knew what levels of blood sugars you're working with we could better know if it might be something useful to some of us.
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Wayne K - Name: Wayne
- Who do you know with myeloma?: Myself, my sister who passed in '95
- When were you/they diagnosed?: 03/09
- Age at diagnosis: 70
Re: Multiple myeloma diet?
I posted the original article a couple of months ago, but here is a mainstream summary:
http://www.forbes.com/sites/alicegwalton/2014/03/04/the-protein-puzzle-meat-and-dairy-may-significantly-increase-cancer-risk/
Diets high in proteins such as the Atkins may actually increase your risk for certain cancers. This was a very large study that was done, and the results were backed by observations in animal studies.
There is also a new study that show that in general, diet has at most a mild effect on cancer over the long run. The key is a good healthy diet, instead of anything extreme.
http://www.forbes.com/sites/alicegwalton/2014/03/04/the-protein-puzzle-meat-and-dairy-may-significantly-increase-cancer-risk/
Diets high in proteins such as the Atkins may actually increase your risk for certain cancers. This was a very large study that was done, and the results were backed by observations in animal studies.
There is also a new study that show that in general, diet has at most a mild effect on cancer over the long run. The key is a good healthy diet, instead of anything extreme.
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dnalex - Name: Alex N.
- Who do you know with myeloma?: mother
- When were you/they diagnosed?: 2007
- Age at diagnosis: 56
Re: Multiple myeloma diet?
Hi.
I guess the fact that there is no drug company backing this up might be why it does not get a lot of press. My oncologist is the one who told me about it - I continue to take Revlimid and will see my nephrologist in June - so I am not rejecting doctors or traditional treatment at all. Frankly, I didn't believe it would work either - but when it did work it seemed unethical not to tell cancer patients about this.
multiple myeloma has destroyed 75% of my kidneys because of the light chain deposition disease so I can't eat really high protein diets. Amazingly, I don't seem to need to eat high protein - I do eat enough protein and I eat a ton of vegetables - at least one salad every day in addition to other vegetables.
Here is a fairly recent study at cancer.gov:
http://www.cancer.gov/clinicaltrials/featured/trials/ketolung
Dietary Intervention for Patients Receiving Chemoradiotherapy for Lung Cancer
Name of the Trial
Phase I Trial of a Ketogenic Diet with Concurrent Chemoradiation for Non-Small Cell Lung Cancer (KETOLUNG; NCT01419587). See the protocol summary.
Principal Investigators
Drs. Sudershan K. Bhatia, Daniel James Berg, John Michael Buatti, and Douglas R. Spitz, University of Iowa Holden Comprehensive Cancer Center
Why This Trial Is Important
One of the fundamental differences between cancer cells and normal cells is in how they break down (metabolize) nutrients to obtain the energy they need to grow and survive. Normal cells typically rely on oxidative metabolism of glucose, fatty acids, or amino acids to produce energy. In this process, which takes place inside cellular structures called mitochondria, chemical reactions that require oxygen are used to maximize the amount of energy produced from each molecule being metabolized.
Cancer cells, on the other hand, have defects in mitochondrial oxidative metabolism, leading to excess production of potentially harmful molecules known as reactive oxygen species. This can create a condition called metabolic oxidative stress. To compensate for this defect in mitochondrial metabolism, cancer cells use mitochondrial oxidative metabolism, as well as another metabolic process called glycolysis, to break down glucose.
Cancer cells are believed to use much more glucose than normal cells because, in addition to using it for energy production, cancer cells can use the products of glucose metabolism to detoxify reactive oxygen species. Researchers are exploring ways that this difference in cellular metabolism between cancer cells and normal cells might be exploited to selectively kill cancer cells.
Carbohydrates in the diet provide a readily available supply of glucose that can be used to fuel cancer cell growth. Therefore, one method being investigated is the use of a specialized diet that dramatically reduces the amount of glucose in the blood, called a ketogenic diet. This type of diet has been used for decades to help children and young adults with treatment-resistant epilepsy that causes grand mal seizures.
Ketogenic diets are so named because they force the body into a starvation-like state called ketosis, in which the liver converts fats into molecules called ketones that circulate in the blood and can serve as mitochondrial energy sources for certain tissues. Ketogenic diets, therefore, restrict the amount of glucose available to cancer cells and force them to rely more heavily on oxidative metabolic pathways that might selectively induce oxidative stress in cancer cells.
"We're interested in a ketogenic diet for cancer therapy because it limits glucose metabolism and emphasizes oxidative metabolism of fatty acids, ketone bodies, and amino acids in mitochondria. We think that mitochondria from tumor cells produce more superoxide and hydrogen peroxide [two types of reactive oxygen species] than mitochondria from normal cells," said Dr. Spitz. "Consuming a ketogenic diet should therefore selectively enhance the sensitivity of tumor cells to treatments that increase oxidative stress, such as radiation and chemotherapy."
Radiation therapy is thought to kill cancer cells by generating free radicals that cause oxidative stress, and this can be enhanced by the simultaneous use of chemotherapy (chemoradiation). "If oxidative stress is selectively enhanced in cancer cells by the ketogenic diet, the reactive oxygen species produced by the radiation and chemotherapy can more effectively damage DNA, proteins, and other critical biomolecules in the cancer cell and improve cancer cell killing, as well as improving therapeutic outcome," he explained.
In this phase I clinical trial, patients with stage III or IV (with limited metastasis) non-small cell lung cancer who are about to undergo chemoradiation therapy will consume a ketogenic diet for the duration of their treatment. Doctors will assess the safety and tolerability of the diet in conjunction with chemoradiation treatment, as well as measure the levels of glucose and ketones in the blood and oxidative stress markers in plasma and urine.
About 90 percent of calories in the ketogenic diet used in this study come from fat, whereas less than 2 percent of calories come from carbohydrates, with protein supplying the remaining calories. Participants will consume specially formulated shakes in the morning and work with a dietician to maintain a similar calorie balance throughout the day. They will begin the ketogenic diet 48 hours before the initiation of chemoradiation therapy and continue through the end of the 6- to 7-week treatment period.
"An excellent example of the role of increased glucose metabolism in cancer is the FDG-PET scan," said Dr. Bhatia. "We use PET scans with all of our lung cancer patients as part of our diagnostic and staging tests. At a fundamental level, the PET scan is done using glucose with a radioactive tag (18F-FDG) injected into the patient, and that glucose lights up the area of tumor cells because of their metabolic pathway. That's how we determine where the tumor is and, in metastatic disease, where the cancer has spread. With this diet, we hope to deprive the tumor of the glucose it depends on for energy as well as enhance oxidative stress."
This study, as well as a similar study for pancreatic cancer patients, is being conducted at the University of Iowa's Holden Comprehensive Cancer Center.
I guess the fact that there is no drug company backing this up might be why it does not get a lot of press. My oncologist is the one who told me about it - I continue to take Revlimid and will see my nephrologist in June - so I am not rejecting doctors or traditional treatment at all. Frankly, I didn't believe it would work either - but when it did work it seemed unethical not to tell cancer patients about this.
multiple myeloma has destroyed 75% of my kidneys because of the light chain deposition disease so I can't eat really high protein diets. Amazingly, I don't seem to need to eat high protein - I do eat enough protein and I eat a ton of vegetables - at least one salad every day in addition to other vegetables.
Here is a fairly recent study at cancer.gov:
http://www.cancer.gov/clinicaltrials/featured/trials/ketolung
Dietary Intervention for Patients Receiving Chemoradiotherapy for Lung Cancer
Name of the Trial
Phase I Trial of a Ketogenic Diet with Concurrent Chemoradiation for Non-Small Cell Lung Cancer (KETOLUNG; NCT01419587). See the protocol summary.
Principal Investigators
Drs. Sudershan K. Bhatia, Daniel James Berg, John Michael Buatti, and Douglas R. Spitz, University of Iowa Holden Comprehensive Cancer Center
Why This Trial Is Important
One of the fundamental differences between cancer cells and normal cells is in how they break down (metabolize) nutrients to obtain the energy they need to grow and survive. Normal cells typically rely on oxidative metabolism of glucose, fatty acids, or amino acids to produce energy. In this process, which takes place inside cellular structures called mitochondria, chemical reactions that require oxygen are used to maximize the amount of energy produced from each molecule being metabolized.
Cancer cells, on the other hand, have defects in mitochondrial oxidative metabolism, leading to excess production of potentially harmful molecules known as reactive oxygen species. This can create a condition called metabolic oxidative stress. To compensate for this defect in mitochondrial metabolism, cancer cells use mitochondrial oxidative metabolism, as well as another metabolic process called glycolysis, to break down glucose.
Cancer cells are believed to use much more glucose than normal cells because, in addition to using it for energy production, cancer cells can use the products of glucose metabolism to detoxify reactive oxygen species. Researchers are exploring ways that this difference in cellular metabolism between cancer cells and normal cells might be exploited to selectively kill cancer cells.
Carbohydrates in the diet provide a readily available supply of glucose that can be used to fuel cancer cell growth. Therefore, one method being investigated is the use of a specialized diet that dramatically reduces the amount of glucose in the blood, called a ketogenic diet. This type of diet has been used for decades to help children and young adults with treatment-resistant epilepsy that causes grand mal seizures.
Ketogenic diets are so named because they force the body into a starvation-like state called ketosis, in which the liver converts fats into molecules called ketones that circulate in the blood and can serve as mitochondrial energy sources for certain tissues. Ketogenic diets, therefore, restrict the amount of glucose available to cancer cells and force them to rely more heavily on oxidative metabolic pathways that might selectively induce oxidative stress in cancer cells.
"We're interested in a ketogenic diet for cancer therapy because it limits glucose metabolism and emphasizes oxidative metabolism of fatty acids, ketone bodies, and amino acids in mitochondria. We think that mitochondria from tumor cells produce more superoxide and hydrogen peroxide [two types of reactive oxygen species] than mitochondria from normal cells," said Dr. Spitz. "Consuming a ketogenic diet should therefore selectively enhance the sensitivity of tumor cells to treatments that increase oxidative stress, such as radiation and chemotherapy."
Radiation therapy is thought to kill cancer cells by generating free radicals that cause oxidative stress, and this can be enhanced by the simultaneous use of chemotherapy (chemoradiation). "If oxidative stress is selectively enhanced in cancer cells by the ketogenic diet, the reactive oxygen species produced by the radiation and chemotherapy can more effectively damage DNA, proteins, and other critical biomolecules in the cancer cell and improve cancer cell killing, as well as improving therapeutic outcome," he explained.
In this phase I clinical trial, patients with stage III or IV (with limited metastasis) non-small cell lung cancer who are about to undergo chemoradiation therapy will consume a ketogenic diet for the duration of their treatment. Doctors will assess the safety and tolerability of the diet in conjunction with chemoradiation treatment, as well as measure the levels of glucose and ketones in the blood and oxidative stress markers in plasma and urine.
About 90 percent of calories in the ketogenic diet used in this study come from fat, whereas less than 2 percent of calories come from carbohydrates, with protein supplying the remaining calories. Participants will consume specially formulated shakes in the morning and work with a dietician to maintain a similar calorie balance throughout the day. They will begin the ketogenic diet 48 hours before the initiation of chemoradiation therapy and continue through the end of the 6- to 7-week treatment period.
"An excellent example of the role of increased glucose metabolism in cancer is the FDG-PET scan," said Dr. Bhatia. "We use PET scans with all of our lung cancer patients as part of our diagnostic and staging tests. At a fundamental level, the PET scan is done using glucose with a radioactive tag (18F-FDG) injected into the patient, and that glucose lights up the area of tumor cells because of their metabolic pathway. That's how we determine where the tumor is and, in metastatic disease, where the cancer has spread. With this diet, we hope to deprive the tumor of the glucose it depends on for energy as well as enhance oxidative stress."
This study, as well as a similar study for pancreatic cancer patients, is being conducted at the University of Iowa's Holden Comprehensive Cancer Center.
-
antelope1225 - Name: Cathy1225
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: May 25 2012
- Age at diagnosis: 55
28 posts
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