I just got back from the oncologist. I have been MUCH more careful to follow restricted ketogenic diet since my numbers went up in November, and my kappa free light chains came back down almost to normal! They were down to 20.4 mg/L (from somewhere around 23-24 on November 10).
This has confirmed to me that I need to be very careful of my diet. I wasn't eating high carb in October and November, but I was being careless. After the numbers went up, I started taking my diet much more seriously. Now I try to have 20 g carbs, 60 g protein, and about 120 g fat per day. I am also measuring my blood glucose more regularly during the day and checking ketones nearly every night. I have had my ketones as high as 3.4 and seldom below 1.0
So, if anyone is reading this and willing to put out the effort, my experience confirms that Dr. Thomas Seyfried is on to something (cancer IS a metabolic disease - and the multiple myeloma cells are weakened by a restrictive ketogenic diet). I am still taking Revlimid, but only taking it once a week. I was taking it every other day with no time off before I started having such good results from this diet.
And since I am not taking as much Revlimid, my WBC is up to about 2.94 - which is better than it was.
Forums
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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: Ketogenic diet and multiple myeloma
I had my appointment with my nephrologist yesterday. He is another doctor who I just love. I took 3 books to show him - Dr Bernstein's "Diabetes Solution" (which got me started on trying to keep blood glucose low and steady), Thomas Seyfried's "Cancer as a Metabolic Disease", and "Tripping over the Truth" by Travis Christofferson.(the last 2 focus on ketogenic diet).
In June, my nephrologist seemed to think I was being a bit extreme in cutting carbs and had suggested I not try to have ketones in blood. But his comment in September was " Wow. You just can't argue with the results" in my blood work since I started eating this way.
Yesterday, he asked how many grams of carbs I eat per day (about 20) and how many grams of protein (about 60) and how many grams of fat (about 120-130). He asked what kind of fats I eat and I said "about 3 T coconut oil per day and butter from grass fed cows and bacon, avocados, macadamia nuts etc" He said he and his wife have started eating a diet much like mine.(!) He said they read "Bulletproof Diet" by Dave Aspey. I just ordered that because it sounds like it is similar to my way of eating.
He did not test for cancer markers, of course, but my WBC's were highest since SCT - they were 4.30. Everything else is stable. He gave me a prescription for iron (I am still anemic), and he wanted me to go get a prescription for 1000-2000 vitamin D because I was just barely in the normal range for vitamin D.
In June, my nephrologist seemed to think I was being a bit extreme in cutting carbs and had suggested I not try to have ketones in blood. But his comment in September was " Wow. You just can't argue with the results" in my blood work since I started eating this way.
Yesterday, he asked how many grams of carbs I eat per day (about 20) and how many grams of protein (about 60) and how many grams of fat (about 120-130). He asked what kind of fats I eat and I said "about 3 T coconut oil per day and butter from grass fed cows and bacon, avocados, macadamia nuts etc" He said he and his wife have started eating a diet much like mine.(!) He said they read "Bulletproof Diet" by Dave Aspey. I just ordered that because it sounds like it is similar to my way of eating.
He did not test for cancer markers, of course, but my WBC's were highest since SCT - they were 4.30. Everything else is stable. He gave me a prescription for iron (I am still anemic), and he wanted me to go get a prescription for 1000-2000 vitamin D because I was just barely in the normal range for vitamin D.
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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: Ketogenic diet and multiple myeloma
Thank you for the regular updates, Cathy, that you've been giving everyone about your experience on the ketogenic diet.
I have been concerned for a while since you started this thread that you were reading a lot into one or two kappa free light chain results that you've gotten, especially since those values can bounce around a lot and also because you've been on Revlimid treatment a lot of the time, both before you started the diet and since you started the diet.
Being the lazy person that I am, I kept hoping that either you or someone else would help us all figure out what effect your diet was having, what was normal "noise" in the light chain results, and what was the effect of the Revlimid by graphing your kappa results.
Alas, my hopes went unanswered and, since I have some time this afternoon, I finally decided to create the graph myself.
Personally, I think the graph tells a VERY different story about the "effect" your diet has had on your light chains than how you've described it here and to your doctors, many of whom probably haven't had the benefit of seeing the complete set of results.
But that's all I'll say for now on that subject.
The dark black line in the graph that I created is a trend line of sorts, fitted to your kappa values from February 2013 to July 2014. That was the period when your kappa values went up out of, and then back down to, the normal kappa range, which I've also plotted with green lines.
For the statistics geeks out there, the "trend line" is a cubic polynomial. It seemed to be the best sort of trend to fit given the shape of the curve created by the lab results.
(Beacon folks -- Perhaps you can embed the graph in this posting?)
(Moderator: Done. We reduced the size of the graph, however, so it will fit completely in the posting. It made the text in the graph somewhat fuzzier, which we tried to correct. If possible, Terry, images that are 490 pixels or less in width are best for posting in the forum. 500 works if the graph does not have too much vertical height.)
I have been concerned for a while since you started this thread that you were reading a lot into one or two kappa free light chain results that you've gotten, especially since those values can bounce around a lot and also because you've been on Revlimid treatment a lot of the time, both before you started the diet and since you started the diet.
Being the lazy person that I am, I kept hoping that either you or someone else would help us all figure out what effect your diet was having, what was normal "noise" in the light chain results, and what was the effect of the Revlimid by graphing your kappa results.
Alas, my hopes went unanswered and, since I have some time this afternoon, I finally decided to create the graph myself.
- KDKFLCs.jpg (84.66 KiB) Viewed 2662 times
Personally, I think the graph tells a VERY different story about the "effect" your diet has had on your light chains than how you've described it here and to your doctors, many of whom probably haven't had the benefit of seeing the complete set of results.
But that's all I'll say for now on that subject.
The dark black line in the graph that I created is a trend line of sorts, fitted to your kappa values from February 2013 to July 2014. That was the period when your kappa values went up out of, and then back down to, the normal kappa range, which I've also plotted with green lines.
For the statistics geeks out there, the "trend line" is a cubic polynomial. It seemed to be the best sort of trend to fit given the shape of the curve created by the lab results.
(Beacon folks -- Perhaps you can embed the graph in this posting?)
(Moderator: Done. We reduced the size of the graph, however, so it will fit completely in the posting. It made the text in the graph somewhat fuzzier, which we tried to correct. If possible, Terry, images that are 490 pixels or less in width are best for posting in the forum. 500 works if the graph does not have too much vertical height.)
Re: Ketogenic diet and multiple myeloma
You are amazing, Terry!
What an amazing graph! What is your profession?
I have found a friend through this forum who also has multiple myeloma. She is also my age and she is a professor at Texas A & M, so I do not worry she is going to do something irresponsible. We correspond directly via email nearly daily - because, until your post, I have had almost no one who seemed interested in this.
She started with MGUS many years ago but it became stage 1 multiple myeloma a couple of years ago and has been progressing. She and I consider ourselves our own Clinical Trial. She is better at intermittent fasting and keeping her blood glucose low, I am better at being steady and I keep my ketones higher than she does usually. She makes suggestions of things I might do differently, and I do the same with her.
We find articles on PubMed and share them. She has been doing this with me about 12 weeks and she has an appointment with her oncologist Monday and I have my appointment with my oncologist the following Monday.
Thank you, Terry! I appreciate how much time you spent on that graph! What a careful reader / listener!
God bless,
Cathy
What an amazing graph! What is your profession?
I have found a friend through this forum who also has multiple myeloma. She is also my age and she is a professor at Texas A & M, so I do not worry she is going to do something irresponsible. We correspond directly via email nearly daily - because, until your post, I have had almost no one who seemed interested in this.
She started with MGUS many years ago but it became stage 1 multiple myeloma a couple of years ago and has been progressing. She and I consider ourselves our own Clinical Trial. She is better at intermittent fasting and keeping her blood glucose low, I am better at being steady and I keep my ketones higher than she does usually. She makes suggestions of things I might do differently, and I do the same with her.
We find articles on PubMed and share them. She has been doing this with me about 12 weeks and she has an appointment with her oncologist Monday and I have my appointment with my oncologist the following Monday.
Thank you, Terry! I appreciate how much time you spent on that graph! What a careful reader / listener!
God bless,
Cathy
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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: Ketogenic diet and multiple myeloma
Ron S has had very though provoking comments too.
He mentioned how losing belly fat can cause the fat in the bone marrow to increase and that somehow raises adiponectin.
Another time he suggested I be more careful with protein amounts and another time suggested I look into how insulin affects insulin growth factor (IGF) with multiple myeloma.
I did look into all of those and appreciate his suggestions.
He mentioned how losing belly fat can cause the fat in the bone marrow to increase and that somehow raises adiponectin.
Another time he suggested I be more careful with protein amounts and another time suggested I look into how insulin affects insulin growth factor (IGF) with multiple myeloma.
I did look into all of those and appreciate his suggestions.
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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: Ketogenic diet and multiple myeloma
HI Cathy
Hope you are doing well. I have talked about adiponectin before and this is a nice study:
JA Fowler et al, "Host-derived adiponectin is tumor-suppressive and a novel therapeutic target for multiple myeloma and the associated bone disease," Blood, 2011 (full text).
Abstract:
The contributions of the host microenvironment to the pathogenesis of multiple myeloma, including progression from the non-malignant disorder monoclonal gammopathy of undetermined significance, are poorly understood.
In the present study, microarray analysis of a murine model requiring a unique host microenvironment for myeloma development identified decreased host-derived adiponectin compared with normal mice. In support, clinical analysis revealed decreased serum adiponectin concentrations in monoclonal gammopathy of undetermined significance patients who subsequently progressed to myeloma.
We investigated the role of adiponectin in myeloma pathogenesis and as a treatment approach, using both mice deficient in adiponectin and pharmacologic enhancement of circulating adiponectin. Increased tumor burden and bone disease were observed in myeloma-bearing adiponectin-deficient mice, and adiponectin was found to induce myeloma cell apoptosis. The apolipoprotein peptide mimetic L-4F was used for pharmacologic enhancement of adiponectin. L-4F reduced tumor burden, increased survival of myeloma-bearing mice, and prevented myeloma bone disease.
Collectively, our studies have identified a novel mechanism whereby decreased host-derived adiponectin promotes myeloma tumor growth and osteolysis. Furthermore, we have established the potential therapeutic benefit of increasing adiponectin for the treatment of myeloma and the associated bone disease.
Hope you are doing well. I have talked about adiponectin before and this is a nice study:
JA Fowler et al, "Host-derived adiponectin is tumor-suppressive and a novel therapeutic target for multiple myeloma and the associated bone disease," Blood, 2011 (full text).
Abstract:
The contributions of the host microenvironment to the pathogenesis of multiple myeloma, including progression from the non-malignant disorder monoclonal gammopathy of undetermined significance, are poorly understood.
In the present study, microarray analysis of a murine model requiring a unique host microenvironment for myeloma development identified decreased host-derived adiponectin compared with normal mice. In support, clinical analysis revealed decreased serum adiponectin concentrations in monoclonal gammopathy of undetermined significance patients who subsequently progressed to myeloma.
We investigated the role of adiponectin in myeloma pathogenesis and as a treatment approach, using both mice deficient in adiponectin and pharmacologic enhancement of circulating adiponectin. Increased tumor burden and bone disease were observed in myeloma-bearing adiponectin-deficient mice, and adiponectin was found to induce myeloma cell apoptosis. The apolipoprotein peptide mimetic L-4F was used for pharmacologic enhancement of adiponectin. L-4F reduced tumor burden, increased survival of myeloma-bearing mice, and prevented myeloma bone disease.
Collectively, our studies have identified a novel mechanism whereby decreased host-derived adiponectin promotes myeloma tumor growth and osteolysis. Furthermore, we have established the potential therapeutic benefit of increasing adiponectin for the treatment of myeloma and the associated bone disease.
Re: Ketogenic diet and multiple myeloma
Hi Ron,
I found your post really interesting. While it looks like the study you mentioned was based on "host"-increased adiponectin (I'm assuming this means what your body itself manufactures), is there any data that you know of about taking a supplement with adiponectin? Are there any drawbacks for doing this? I've noticed that this ingredient is in several diet supplements.
Thanks,
Sandy
I found your post really interesting. While it looks like the study you mentioned was based on "host"-increased adiponectin (I'm assuming this means what your body itself manufactures), is there any data that you know of about taking a supplement with adiponectin? Are there any drawbacks for doing this? I've noticed that this ingredient is in several diet supplements.
Thanks,
Sandy
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SandyC63 - Name: SandyC
- Who do you know with myeloma?: My Husband
- When were you/they diagnosed?: 2012
- Age at diagnosis: 51
Re: Ketogenic diet and multiple myeloma
Sandy
There is no adiponectin supplement that I am aware of,only products that say they help form it. Seems like the best approach is to help your body increase its levels by losing the excess visceral fat (internal fat that is around the organs of the abdomen). Excess visceral fat decreases adiponectin and normal body fat increases it. This is where a low carb diet helps along with many other positive effects. Excess fat especially in the belly area that you see is an indicator that weight loss is needed. You can still have a relatively lean look and have excess visceral fat due to diet and lifestyle.
There is no adiponectin supplement that I am aware of,only products that say they help form it. Seems like the best approach is to help your body increase its levels by losing the excess visceral fat (internal fat that is around the organs of the abdomen). Excess visceral fat decreases adiponectin and normal body fat increases it. This is where a low carb diet helps along with many other positive effects. Excess fat especially in the belly area that you see is an indicator that weight loss is needed. You can still have a relatively lean look and have excess visceral fat due to diet and lifestyle.
Re: Ketogenic diet and multiple myeloma
Hi Ron,
Thanks for the additional insights. I've noticed some supplements that are intended to help increase the level of adiponectin in serum. I know that diet and exercise are the main "treatment" - I just wonder if a supplement would also be beneficial? Then again, I'd hate to introduce anything weird into my husband's diet - while not in remission, he is stable since his stem cell transplant last year.
Time to get back to walking more!
Sandy
Thanks for the additional insights. I've noticed some supplements that are intended to help increase the level of adiponectin in serum. I know that diet and exercise are the main "treatment" - I just wonder if a supplement would also be beneficial? Then again, I'd hate to introduce anything weird into my husband's diet - while not in remission, he is stable since his stem cell transplant last year.
Time to get back to walking more!
Sandy
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SandyC63 - Name: SandyC
- Who do you know with myeloma?: My Husband
- When were you/they diagnosed?: 2012
- Age at diagnosis: 51
Re: Ketogenic diet and multiple myeloma
Here is press release about an interesting study on adiponectin:
New myeloma-obesity research reveals a way drugs could work arm-in-arm with body’s own defenses
San Antonio (May 1, 2014) — Obesity increases the risk of myeloma, a cancer of plasma cells that accumulate inside the bones.
And with current obesity trends in the United States and especially in South Texas, that’s ominous.
“I’m predicting an increase in multiple myeloma,” said Edward Medina, M.D., Ph.D., “and with the obesity problems we see in the Hispanic population, there could be a serious health disparity on the horizon.”
Dr. Medina, a hematopathologist and assistant professor in the Department of Pathology at The University of Texas Health Science Center at San Antonio, is looking at exactly how obesity causes an increased risk for myeloma.
What he and his colleagues have discovered is a potential way to not only boost the effectiveness of current chemotherapy treatments for myeloma, but at the same time a way to help the body help itself.
In a paper published this week in the journal Leukemia, Dr. Medina and his team look at an important little protein called adiponectin.
Myeloma is often called multiple myeloma because it occurs at many sites within the bone marrow. Healthy plasma cells produce antibodies that fight infection in the body, but myeloma cells produce high levels of abnormal antibodies that, when the cancer cells accumulate, they crowd out production of other important blood cells, both red and white.
“They basically overtake the bone marrow,” Dr. Medina said.
The disease can lead to bone pain and fragility, confusion, excessive thirst and kidney failure. While survival rates for patients with myeloma have increased in recent years, many people do not live more than five years beyond diagnosis.
Adiponectin is a protective protein that plays several roles in keeping the body healthy, including killing cancer cells. While adiponectin is produced by fat cells, Medina said, obese people have less of it. The reason for this paradox is that in cases of obesity, fat cells function abnormally, including producing less adiponectin. What they produce more of, however, are fatty acids, and it is likely that myeloma cells can feed on these fatty acids.
“Synthesizing fatty acids is important for myeloma cells to build vital structures, including cell membranes, that enable them to keep on growing,” Medina said.
Focusing on adiponectin led Dr. Medina’s lab to protein kinase A or “PKA” — a protein that, when activated by adiponectin, suppresses the fatty acids that myeloma cells need, leading to their demise.
The idea is to use the understanding of the pathways that adiponectin uses to kill myeloma cells to create a drug that would do the same thing.
“If we could pharmacologically suppress these fatty acid levels in obese myeloma patients, we could boost the effects of the chemotherapy that targets PKA or fatty acid synthesis, and potentially decrease the chemotherapeutic dose,” Medina said. “Also, it would give your own body’s protective measures more of a chance to work against the cancer.”
Dr. Medina’s research was funded by the Multiple Myeloma Research Foundation and a KL2 award from the Health Science Center's IIMS-Clinical and Translational Science Award from the National Institutes of Health’s National Center for Advancing Translational Sciences. Key contributors to this work include Kelli Oberheu, Srikanth Polusani, Ph.D., postdoctoral fellow in the Department of Biochemistry and Babatunde Oyajobi, M.D., Ph.D., associate professor of cellular and structural biology.
http://uthscsa.edu/hscnews/singleformat2.asp?newID=4780
New myeloma-obesity research reveals a way drugs could work arm-in-arm with body’s own defenses
San Antonio (May 1, 2014) — Obesity increases the risk of myeloma, a cancer of plasma cells that accumulate inside the bones.
And with current obesity trends in the United States and especially in South Texas, that’s ominous.
“I’m predicting an increase in multiple myeloma,” said Edward Medina, M.D., Ph.D., “and with the obesity problems we see in the Hispanic population, there could be a serious health disparity on the horizon.”
Dr. Medina, a hematopathologist and assistant professor in the Department of Pathology at The University of Texas Health Science Center at San Antonio, is looking at exactly how obesity causes an increased risk for myeloma.
What he and his colleagues have discovered is a potential way to not only boost the effectiveness of current chemotherapy treatments for myeloma, but at the same time a way to help the body help itself.
In a paper published this week in the journal Leukemia, Dr. Medina and his team look at an important little protein called adiponectin.
Myeloma is often called multiple myeloma because it occurs at many sites within the bone marrow. Healthy plasma cells produce antibodies that fight infection in the body, but myeloma cells produce high levels of abnormal antibodies that, when the cancer cells accumulate, they crowd out production of other important blood cells, both red and white.
“They basically overtake the bone marrow,” Dr. Medina said.
The disease can lead to bone pain and fragility, confusion, excessive thirst and kidney failure. While survival rates for patients with myeloma have increased in recent years, many people do not live more than five years beyond diagnosis.
Adiponectin is a protective protein that plays several roles in keeping the body healthy, including killing cancer cells. While adiponectin is produced by fat cells, Medina said, obese people have less of it. The reason for this paradox is that in cases of obesity, fat cells function abnormally, including producing less adiponectin. What they produce more of, however, are fatty acids, and it is likely that myeloma cells can feed on these fatty acids.
“Synthesizing fatty acids is important for myeloma cells to build vital structures, including cell membranes, that enable them to keep on growing,” Medina said.
Focusing on adiponectin led Dr. Medina’s lab to protein kinase A or “PKA” — a protein that, when activated by adiponectin, suppresses the fatty acids that myeloma cells need, leading to their demise.
The idea is to use the understanding of the pathways that adiponectin uses to kill myeloma cells to create a drug that would do the same thing.
“If we could pharmacologically suppress these fatty acid levels in obese myeloma patients, we could boost the effects of the chemotherapy that targets PKA or fatty acid synthesis, and potentially decrease the chemotherapeutic dose,” Medina said. “Also, it would give your own body’s protective measures more of a chance to work against the cancer.”
Dr. Medina’s research was funded by the Multiple Myeloma Research Foundation and a KL2 award from the Health Science Center's IIMS-Clinical and Translational Science Award from the National Institutes of Health’s National Center for Advancing Translational Sciences. Key contributors to this work include Kelli Oberheu, Srikanth Polusani, Ph.D., postdoctoral fellow in the Department of Biochemistry and Babatunde Oyajobi, M.D., Ph.D., associate professor of cellular and structural biology.
http://uthscsa.edu/hscnews/singleformat2.asp?newID=4780
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