Oh, I should say what I have done differently in the last 2 months.
1. I continue the ketogenic diet - take blood ketone and blood glucose readings every night
2. I took 6 g Curcumin per day with 1500mg Omega 3 fish oil to help absorption
3. I took about 1 tsp cumin seed oil per day
4. I am careful to take 3 T of coconut oil or MCT oil every day
5. had 1/2 tsp horseradish per day (not sure if that is anything significant)
6. I had green tea powder more often. I do not really like green tea so I got it powdered and put 1/2-1 tsp of it in smoothie
What I will work on this next 3 months:
All of the above and also
1. no artificial sweeteners except small amount of stevia
2.vegetable smoothie every morning for breakfast
3. avoid MSG and all "free glutamates" that I can
4. cut back on cheese - OK to have high fat cream cheese, sour cream, and a little sharp cheese to add flavor.
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
Thanks for the update on your kappa free light chain levels, Cathy.
I think it would be helpful if you put your recent numbers in perspective. For that, I refer everyone back to the graph I created and posted earlier in this thread:
https://myelomabeacon.org/forum/ketogenic-diet-multiple-myeloma-t3393-100.html#p28051
You started your ketogenic diet when your kappa level was just a bit higher (28) than it is now. You also were still taking Revlimid. You say you started the diet in earnest around the time your kappa free light chain level was 26. Again, you were still on Revlimid, albeit at a low dose.
While still on Revlimid and doing the ketogenic diet, your kappa FLC level got as low as 12. At some point since then, you dropped Revlimid, and your kappa FLC levels have been hovering in the 20s.
In other words, your latest kappa FLC result is by no means the best number you've ever had. It has just come down a bit from a number that was recently higher ... and which occurred while you were only on the ketogenic diet (no Revlimid).
You seem to be operating under the assumption that your ketogenic diet must be working because your kappa numbers aren't going up. But, before maintenance and continuous therapy became as common as they are now, people would be treated with Revlimid and dex, or Velcade and dex, or thalidomide and dex, etc., for a fixed number of cycles, and then they would remain in remission without further treatment ... often for several years.
In other words, just because you have stayed in remission, without being on Revlimid, is not proof that your ketogenic diet is having much of an effect on your myeloma.
I am sorry to keep harping on this point. However, so long as you keep making posts that give the impression that your diet is having a dramatic effect on your disease, I think it only right that someone -- whether it be me or someone else -- set the facts straight.
I think it would be helpful if you put your recent numbers in perspective. For that, I refer everyone back to the graph I created and posted earlier in this thread:
https://myelomabeacon.org/forum/ketogenic-diet-multiple-myeloma-t3393-100.html#p28051
You started your ketogenic diet when your kappa level was just a bit higher (28) than it is now. You also were still taking Revlimid. You say you started the diet in earnest around the time your kappa free light chain level was 26. Again, you were still on Revlimid, albeit at a low dose.
While still on Revlimid and doing the ketogenic diet, your kappa FLC level got as low as 12. At some point since then, you dropped Revlimid, and your kappa FLC levels have been hovering in the 20s.
In other words, your latest kappa FLC result is by no means the best number you've ever had. It has just come down a bit from a number that was recently higher ... and which occurred while you were only on the ketogenic diet (no Revlimid).
You seem to be operating under the assumption that your ketogenic diet must be working because your kappa numbers aren't going up. But, before maintenance and continuous therapy became as common as they are now, people would be treated with Revlimid and dex, or Velcade and dex, or thalidomide and dex, etc., for a fixed number of cycles, and then they would remain in remission without further treatment ... often for several years.
In other words, just because you have stayed in remission, without being on Revlimid, is not proof that your ketogenic diet is having much of an effect on your myeloma.
I am sorry to keep harping on this point. However, so long as you keep making posts that give the impression that your diet is having a dramatic effect on your disease, I think it only right that someone -- whether it be me or someone else -- set the facts straight.
Re: Ketogenic diet and multiple myeloma
Terry:
You have applied science directly to "anecdotal" diets. Thank you.
I have done Atkins for the past 3 months --with the best outcome having been the elimination of excess fluid from my body. A sign that inflammation may be reducing, along with excess fluid.
( I am, and have been, taking Revlimid 10 mg/ daily x 30days-- w/ no steroids).
I am someone who absorbs fluid, likely in a cellular response to the toxicity of Revlimid.
I no longer need to take 40 mg furosemide daily, to wick off excess fluid.
However, I agree that the nexus between ketogenic / lowered inflammation / fluid management .....and lowered Kappa (or Lambda) free light chains is still..." very anecdotal"...at best.
My numbers have been stable since last Fall. Recent diet (Atkins) has not measured into any clear benefit, other than above.
I'm just not as "fat", nor as "Fluid filled", for which I am grateful. My myeloma numbers are wholly unchanged, since last fall.
You have applied science directly to "anecdotal" diets. Thank you.
I have done Atkins for the past 3 months --with the best outcome having been the elimination of excess fluid from my body. A sign that inflammation may be reducing, along with excess fluid.
( I am, and have been, taking Revlimid 10 mg/ daily x 30days-- w/ no steroids).
I am someone who absorbs fluid, likely in a cellular response to the toxicity of Revlimid.
I no longer need to take 40 mg furosemide daily, to wick off excess fluid.
However, I agree that the nexus between ketogenic / lowered inflammation / fluid management .....and lowered Kappa (or Lambda) free light chains is still..." very anecdotal"...at best.
My numbers have been stable since last Fall. Recent diet (Atkins) has not measured into any clear benefit, other than above.
I'm just not as "fat", nor as "Fluid filled", for which I am grateful. My myeloma numbers are wholly unchanged, since last fall.
-
Rneb
Re: Ketogenic diet and multiple myeloma
Terry, you think the Revlimid is what has caused me to do well. You can argue that my results would have been the same without my lifestyle changes - there is no way to know.
Cancer generally progresses - mine is NOT progressing. You think it is a delayed "remission" . My medical charts did not say I was in remission until this spring 2015 - a year after I had been doing this diet, more than 2 years after my ASCT- and a year after I had cut Revlimid down to 5 mg per week.
I am not going to argue with you. You are obviously intelligent and know a lot about Myeloma - you know more than I do about Myeloma. But, I can't believe you have not read studies on the effect of blood glucose on cancer, I admit there have not been double blind studies to prove low carb or ketogenic diets "work". I don't have time to wait for those.
My kidneys have also improved dramatically. My initial kidney biopsy which was tested at Mayo Clinic said I had 75% cortical scaring. Now my kidney function is up to 45% and creatinine has not been above 1.3 for a year. That is another reason I will keep doing what I am doing.
I have included some links to research on this post, and I have 10x as many links on my computer - solid research at NIH - finding that a ketogenic diet is helpful in controlling cancer and other diseases. Low carb prevents insulin spikes, which affects IGF which affects cancer growth. And low carb lowers inflammation as Rneb pointed out (inflammation seems to be tied to angiogenesis -the blood vessels that feed cancer cells)
Dr. Terry Wahls reversed multiple sclerosis with a ketogenic diet and she is currently doing research to see if her results can be replicated in others – and to try to determine what has contributed the most to her recovery. Go to PubMed and do a search of her name.
Johns Hopkins University administers ketogenic diets to epileptic children who do not respond to medication. The diet doesn't help everyone, but it helps many and some are completely cured- others will need to eat a ketogenic diet indefinitely to prevent seizures.
I have found 3 things that seem to manage my multiple myeloma. I am obviously not going to quit doing them to see if Terry is right and my cancer numbers stay down without doing these.
1.A ketogenic diet - I stay in ketosis.
2. Avoid free glutamates - glutamine (precursor to glutamate) provides the nitrogen used by cancer cells. Cancer cells use 10x as much glutamine as other cells and far more than any other amino acid. Can go to pubmed and search glutamine and cancer
3. I take 6 g of Curcumin with bioperine every day with some oil. Dr at MD Anderson has done the most study on this.
I feel God has blessed my efforts and I am grateful that I feel like a healthy, happy 58 year old woman.
Cathy
Cancer generally progresses - mine is NOT progressing. You think it is a delayed "remission" . My medical charts did not say I was in remission until this spring 2015 - a year after I had been doing this diet, more than 2 years after my ASCT- and a year after I had cut Revlimid down to 5 mg per week.
I am not going to argue with you. You are obviously intelligent and know a lot about Myeloma - you know more than I do about Myeloma. But, I can't believe you have not read studies on the effect of blood glucose on cancer, I admit there have not been double blind studies to prove low carb or ketogenic diets "work". I don't have time to wait for those.
My kidneys have also improved dramatically. My initial kidney biopsy which was tested at Mayo Clinic said I had 75% cortical scaring. Now my kidney function is up to 45% and creatinine has not been above 1.3 for a year. That is another reason I will keep doing what I am doing.
I have included some links to research on this post, and I have 10x as many links on my computer - solid research at NIH - finding that a ketogenic diet is helpful in controlling cancer and other diseases. Low carb prevents insulin spikes, which affects IGF which affects cancer growth. And low carb lowers inflammation as Rneb pointed out (inflammation seems to be tied to angiogenesis -the blood vessels that feed cancer cells)
Dr. Terry Wahls reversed multiple sclerosis with a ketogenic diet and she is currently doing research to see if her results can be replicated in others – and to try to determine what has contributed the most to her recovery. Go to PubMed and do a search of her name.
Johns Hopkins University administers ketogenic diets to epileptic children who do not respond to medication. The diet doesn't help everyone, but it helps many and some are completely cured- others will need to eat a ketogenic diet indefinitely to prevent seizures.
I have found 3 things that seem to manage my multiple myeloma. I am obviously not going to quit doing them to see if Terry is right and my cancer numbers stay down without doing these.
1.A ketogenic diet - I stay in ketosis.
2. Avoid free glutamates - glutamine (precursor to glutamate) provides the nitrogen used by cancer cells. Cancer cells use 10x as much glutamine as other cells and far more than any other amino acid. Can go to pubmed and search glutamine and cancer
3. I take 6 g of Curcumin with bioperine every day with some oil. Dr at MD Anderson has done the most study on this.
I feel God has blessed my efforts and I am grateful that I feel like a healthy, happy 58 year old woman.
Cathy
Last edited by antelope1225 on Wed Sep 23, 2015 8:32 pm, edited 3 times in total.
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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
Dear Cathy,
I have read many of your posts, and Terry's also. You are probably coming in from differing perspectives about myeloma. If this diet is working for you, then I think you know what you are doing! Terry is perhaps more of a science only type. Nothing wrong with that either!
I think that most of us have some beliefs outside of the straight chemotherapies that we think are helping us. I do too. It is not diet per se, since I try to adhere to a moderate diet, but nothing too out of the ordinary. With me it is more of how I get exercise, and enough rest, and low stress too.
Best wishes to you. I couldn't be managing as well as I am without the chemotherapy drugs I take, but I think that there is more to survival than just the drugs.
I have read many of your posts, and Terry's also. You are probably coming in from differing perspectives about myeloma. If this diet is working for you, then I think you know what you are doing! Terry is perhaps more of a science only type. Nothing wrong with that either!
I think that most of us have some beliefs outside of the straight chemotherapies that we think are helping us. I do too. It is not diet per se, since I try to adhere to a moderate diet, but nothing too out of the ordinary. With me it is more of how I get exercise, and enough rest, and low stress too.
Best wishes to you. I couldn't be managing as well as I am without the chemotherapy drugs I take, but I think that there is more to survival than just the drugs.
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Nancy Shamanna - Name: Nancy Shamanna
- Who do you know with myeloma?: Self and others too
- When were you/they diagnosed?: July 2009
Re: Ketogenic diet and multiple myeloma
Thank you, Nancy.
I always seem be so controversial. sigh.
Cathy
I always seem be so controversial. sigh.
Cathy
Last edited by antelope1225 on Thu Sep 24, 2015 9:32 am, edited 2 times in total.
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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
By the way, Nancy, I agree with you about low stress, gentle exercise and rest. The way I eat might be stressful for some people - but I have gradually moved into it. I don't like feeling helpless- I am doing what I can to help my body fight the cancer.
I hope you are doing well.
Cathy
I hope you are doing well.
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
Cathy,
I am glad for you that the diet is working. I didn't have kidney damage thankfully, and was actually in a remission and took no chemo drugs for 3 1/2 years, so that was a long 'drug holiday'. That had to do with earlier methods of treatment, before 'maintenance' was approved in Canada. So my path has been a little different from the modern norm too.
I am doing fine actually, and am working around the side effects of 25 mg Revlimid and 20 mg weekly dex. I have a nice life, without much stress, and am doing OK for my age also (64). Lots of my friends now have other health problems too, so I don't feel alone in trying to manage my health. I can keep up with most of my usual activities, but find I can't do as much as I did when I wasn't taking chemo.
When I plan my diet, I have to work around the fact that Revlimid causes my digestive system to slow down, so it's porridge for breakfast, and not much meat or foods that are 'heavy' and slow to digest! We eat lots of vegetables, actually.
I am glad for you that the diet is working. I didn't have kidney damage thankfully, and was actually in a remission and took no chemo drugs for 3 1/2 years, so that was a long 'drug holiday'. That had to do with earlier methods of treatment, before 'maintenance' was approved in Canada. So my path has been a little different from the modern norm too.
I am doing fine actually, and am working around the side effects of 25 mg Revlimid and 20 mg weekly dex. I have a nice life, without much stress, and am doing OK for my age also (64). Lots of my friends now have other health problems too, so I don't feel alone in trying to manage my health. I can keep up with most of my usual activities, but find I can't do as much as I did when I wasn't taking chemo.
When I plan my diet, I have to work around the fact that Revlimid causes my digestive system to slow down, so it's porridge for breakfast, and not much meat or foods that are 'heavy' and slow to digest! We eat lots of vegetables, actually.
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Nancy Shamanna - Name: Nancy Shamanna
- Who do you know with myeloma?: Self and others too
- When were you/they diagnosed?: July 2009
Re: Ketogenic diet and multiple myeloma
Antelope:
Please do not misquote me or twist what I say:.
And low carb lowers inflammation as Rneb pointed out (inflammation seems to be tied to angiogenesis -the blood vessels that feed cancer cells)
I never linked inflammation to the Myeloma--you have done that--and with little proof. Angiogenesis LIKELY REDUCES inflammation, as from an accepted serological model, there is an overall LESSENED response.
I , more likely than not, would link inflammation and fluid accumulation due to the secondary toxicity of the Revlimid, etc--rather than the myeloma itself. Thus, Atkins type diets may help "wick" off excess interstitial fluid--present only, due to a toxic response by the body. It however, has nothing to do with the Myeloma, itself.
If you believe in the serological models of angiogenesis, Atkins diets will have no effect.
Angiogenesis is like a switch that prevents Boxcars ( Blood cells) from reaching cancer (Myeloma--the station)
If there are no Boxcars reaching the cancer--it doesn't matter if they are empty ,or full of sugar , and other "Ketogenic stuff".
That is my belief.
Please do not misquote me or twist what I say:.
And low carb lowers inflammation as Rneb pointed out (inflammation seems to be tied to angiogenesis -the blood vessels that feed cancer cells)
I never linked inflammation to the Myeloma--you have done that--and with little proof. Angiogenesis LIKELY REDUCES inflammation, as from an accepted serological model, there is an overall LESSENED response.
I , more likely than not, would link inflammation and fluid accumulation due to the secondary toxicity of the Revlimid, etc--rather than the myeloma itself. Thus, Atkins type diets may help "wick" off excess interstitial fluid--present only, due to a toxic response by the body. It however, has nothing to do with the Myeloma, itself.
If you believe in the serological models of angiogenesis, Atkins diets will have no effect.
Angiogenesis is like a switch that prevents Boxcars ( Blood cells) from reaching cancer (Myeloma--the station)
If there are no Boxcars reaching the cancer--it doesn't matter if they are empty ,or full of sugar , and other "Ketogenic stuff".
That is my belief.
-
Rneb
Re: Ketogenic diet and multiple myeloma
Hi,
A correction needs to be made to one of Cathy's assertions above:
Actually, Dr. Terry Wahl uses a "multimodal" intervention strategy to treat MS in her most recent published trial results (secondary and primary progressive MS) with 20 patients:
The details of the diet can are here:
https://www.dovepress.com/cr_data/article_fulltext/s76000/76523/img/Table1.jpg
No mention of ketosis or even testing for ketones in this study, however the diet was just one component with electrical stimulation, exercise, stretching, stress reduction, supplements etc.
Being an MS patient also, I do think this study has some merit and has encouraged me even with just over 50 percent responding to the intervention. Just not a ketosis-based diet.
Best! BN
A correction needs to be made to one of Cathy's assertions above:
Dr. Terry Wahls reversed multiple sclerosis with a ketogenic diet and she is currently doing research to see if her results can be replicated in others – and to try to determine what has contributed the most to her recovery.
Actually, Dr. Terry Wahl uses a "multimodal" intervention strategy to treat MS in her most recent published trial results (secondary and primary progressive MS) with 20 patients:
Intervention
We used a multimodal intervention consisting of a modified Paleolithic diet, a home exercise program including stretching and strengthening exercises of trunk and lower limb muscles, neuromuscular electrical stimulation, stress reduction techniques, and nutritional supplements to address specific deficiencies.
The details of the diet can are here:
https://www.dovepress.com/cr_data/article_fulltext/s76000/76523/img/Table1.jpg
No mention of ketosis or even testing for ketones in this study, however the diet was just one component with electrical stimulation, exercise, stretching, stress reduction, supplements etc.
Being an MS patient also, I do think this study has some merit and has encouraged me even with just over 50 percent responding to the intervention. Just not a ketosis-based diet.
Best! BN
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Bar-none - Who do you know with myeloma?: Me
- When were you/they diagnosed?: 3/14
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