Thanks Jerseygyrl,
I will let you know after my next appointment - next Monday!
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
Cathy, I would be interested in any great articles you have gathered on a ketogenic diet and multiple myeloma. I am on a ketogenic diet to lose weight but my mother, cousin and now grandmother all have multiple myeloma and I am wondering if I should advocate them moving in this direction with their diets.
Good luck on your next round of results!!
Jennifer
Good luck on your next round of results!!
Jennifer
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jsherrill - Name: Jennifer Reese-Sherrill
- Who do you know with myeloma?: mom, cousin, grandmother
- When were you/they diagnosed?: 2012, 2005, 2014
- Age at diagnosis: 70
Re: Ketogenic diet and multiple myeloma
My appointment with kidney doctor was good but a little humbling because I learned that diet helps manage my health but is not a cure for me.
First, I got a wicked kidney infection - I had never had one so bad before - it got so bad I could not turn to plug in my seat belt or lean back in a chair. I went in Wednesday and gave a urine specimen. They found I had infection, but couldn't prescribe a broad spectrum antibiotic because I have had C-Diff 4x.
So they had to culture the bacteria and check with Infectious Disease to find an antibiotic that would work. I am taking Cefuroxime 500 mg 2x per day. The doctor asked if antibiotics are causing flare up of C-Diff and I said I have had diarrhea almost every day but I can control it by taking probiotics. I take Culturelle every day and also a generic version of Align and I read on the internet about the probiotics they give in Canada to combat C-Diff and found that probiotic is in "Healthy Trinity" - which is expensive ($50 for small bottle) and is kept in the fridge. But if I get diarrhea even with the other 2 probiotics, I take one of the healthy trinity and it stops the diarrhea. So I am a walking science experiment.
My creatinine is pretty good - not quite as good as last time (1.52) -- and the same with GFR (40.5). I don't yet have my results on the cancer markers - I will have those next Monday.
I talked to my nephrologist about my low carb diet. He was very impressed and encouraged me to stay on it. He said I am probably right at a split in the road where I would have become diabetic if I had not adopted low carb diet. He said most people do not control their blood sugar with diet and exercise alone - reminds me of what my oncologist said: "it is simple but hard."
Doctor said he wants me to keep eating low carb but does not want me to go all the way into ketosis. He said that insulin is a growth factor and is harmful in many ways, so my low carb diet and exercise help keep the blood sugar and insulin low. It sounded like ketones make the blood acidic or something - and I already take sodium bicarb for acidic blood.
As for the humbling part, I can see what diet can help and what it can't help. It is not a miracle.
My white blood cell count is down to 2.02, which means I am very vulnerable to getting sick.
Vitamin D is low and PTH is high - so he going to give me 5000 IU of vitamin D once a week for 12 weeks and a prescription for iron. My white blood cell count is way down (all neutrophils, lymphocytes, monocytes, basophils were worse).
I think I will take another blood test this Friday to have a set of numbers without the kidney infection and I will see my oncologist next Monday.
I will send you some links tomorrow from my computer at the office, Jsherill, about multiple myeloma & low carb/ ketogenic diet. For people with better kidneys, ketosis might be fine, but I am supposed to not try for that.
My A1c was 5.1.
First, I got a wicked kidney infection - I had never had one so bad before - it got so bad I could not turn to plug in my seat belt or lean back in a chair. I went in Wednesday and gave a urine specimen. They found I had infection, but couldn't prescribe a broad spectrum antibiotic because I have had C-Diff 4x.
So they had to culture the bacteria and check with Infectious Disease to find an antibiotic that would work. I am taking Cefuroxime 500 mg 2x per day. The doctor asked if antibiotics are causing flare up of C-Diff and I said I have had diarrhea almost every day but I can control it by taking probiotics. I take Culturelle every day and also a generic version of Align and I read on the internet about the probiotics they give in Canada to combat C-Diff and found that probiotic is in "Healthy Trinity" - which is expensive ($50 for small bottle) and is kept in the fridge. But if I get diarrhea even with the other 2 probiotics, I take one of the healthy trinity and it stops the diarrhea. So I am a walking science experiment.
My creatinine is pretty good - not quite as good as last time (1.52) -- and the same with GFR (40.5). I don't yet have my results on the cancer markers - I will have those next Monday.
I talked to my nephrologist about my low carb diet. He was very impressed and encouraged me to stay on it. He said I am probably right at a split in the road where I would have become diabetic if I had not adopted low carb diet. He said most people do not control their blood sugar with diet and exercise alone - reminds me of what my oncologist said: "it is simple but hard."
Doctor said he wants me to keep eating low carb but does not want me to go all the way into ketosis. He said that insulin is a growth factor and is harmful in many ways, so my low carb diet and exercise help keep the blood sugar and insulin low. It sounded like ketones make the blood acidic or something - and I already take sodium bicarb for acidic blood.
As for the humbling part, I can see what diet can help and what it can't help. It is not a miracle.
My white blood cell count is down to 2.02, which means I am very vulnerable to getting sick.
Vitamin D is low and PTH is high - so he going to give me 5000 IU of vitamin D once a week for 12 weeks and a prescription for iron. My white blood cell count is way down (all neutrophils, lymphocytes, monocytes, basophils were worse).
I think I will take another blood test this Friday to have a set of numbers without the kidney infection and I will see my oncologist next Monday.
I will send you some links tomorrow from my computer at the office, Jsherill, about multiple myeloma & low carb/ ketogenic diet. For people with better kidneys, ketosis might be fine, but I am supposed to not try for that.
My A1c was 5.1.
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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,
After reading your post , one thing stood out for me .... your nephrologist was very impressed and encouraged you to stay low carb!!
That is VERY good news As someone who has been eating low carb for 10+ years now, I can tell you, a lot of doctors do not agree with this way of eating. Sounds like you've found one with some education about low carb & an open mind. Bravo!!!
Being that you've gone through a severe kidney infection and have other issues, I can understand his telling you to avoid ketosis. He is most likely fearful of you developing ketoacidosis. This occurs when the level of ketones in the blood go haywire, producing way too many and causes the ketones to become acidic. This happens only as long as the ketones are moving about the blood waiting to be burned. If the level of ketones in the blood rises too high, it lowers the PH level of the blood and could cause death.
Ketoacidosis, however, is not an issue for someone who is not diabetic. People who do not have diabetes bodies keep their blood sugar levels low and will only allow so many ketones to be produced at a particular time. Low insulin to glucagon ratio is what cause ketogenesis to be started and this is when a person can be faced with ketoacidosis.
All that said, it is completely possible to eat low carb and avoid ketosis which, I believe, is what your doctor is suggesting you do. Lots of veggies, salads, fruits, lean meats, poultry, fish along with cheeses, eggs and full fat dairy are low carb staples. There are lots of great low carb websites and information available to assist you in doing this.
Try not to become discouraged with this Cathy. It sounds as though it is working well for you and your doctor is supportive.
Keep up the good work!
Kim
After reading your post , one thing stood out for me .... your nephrologist was very impressed and encouraged you to stay low carb!!
That is VERY good news As someone who has been eating low carb for 10+ years now, I can tell you, a lot of doctors do not agree with this way of eating. Sounds like you've found one with some education about low carb & an open mind. Bravo!!!Being that you've gone through a severe kidney infection and have other issues, I can understand his telling you to avoid ketosis. He is most likely fearful of you developing ketoacidosis. This occurs when the level of ketones in the blood go haywire, producing way too many and causes the ketones to become acidic. This happens only as long as the ketones are moving about the blood waiting to be burned. If the level of ketones in the blood rises too high, it lowers the PH level of the blood and could cause death.
Ketoacidosis, however, is not an issue for someone who is not diabetic. People who do not have diabetes bodies keep their blood sugar levels low and will only allow so many ketones to be produced at a particular time. Low insulin to glucagon ratio is what cause ketogenesis to be started and this is when a person can be faced with ketoacidosis.
All that said, it is completely possible to eat low carb and avoid ketosis which, I believe, is what your doctor is suggesting you do. Lots of veggies, salads, fruits, lean meats, poultry, fish along with cheeses, eggs and full fat dairy are low carb staples. There are lots of great low carb websites and information available to assist you in doing this.
Try not to become discouraged with this Cathy. It sounds as though it is working well for you and your doctor is supportive.
Keep up the good work!
Kim
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Jerseygyrl - Name: Kim
- Who do you know with myeloma?: My Loved One
- When were you/they diagnosed?: February 2014
- Age at diagnosis: 58
Re: Ketogenic diet and multiple myeloma
Hi Jerseygyrl.
I was yesterday discouraged because I hoped eating low carb was going to make me as good as new
. It is a bit of a jolt to realize that even though I can't see the cancer, it has damaged my insides and the chemo causes a very low White Blood Count - it was the lowest it has been since I have been out of the hospital. I canceled some things this week so I don't get sick before my sons wedding on Saturday. My low white blood count is probably why I got that kidney infection, too.
I actually prefer to eat low carb now - I eat much healthier and I eat a ton more vegetables. It isn't hard for me now that I have good recipes and snacks. I love not getting hungry - which is from the stable blood sugar. I find that the food I eat is delicious and it is no harder to cook this way than the way I cooked before.
Here are some articles about cancer and low carb diets, Jennifer. They are about cancer in general, not just multiple myeloma.
"Texas man fights terminal lung cancer without chemo using ketogenic diet"
http://www.examiner.com/article/texas-man-uses-low-carb-high-fat-ketogenic-diet-to-battle-terminal-lung-cancer
"Effects of a ketogenic diet on the quality of life in 16 patients with advanced cancer: A pilot trial"
Nutr Metab (Lond). 2011; 8: 54
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3157418/
"Ketogenic Diets: New Advances for Metabolism-Based Therapies"
Curr Opin Neurol. Apr 2012; 25(2): 173–178.
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4002181/
"Ketogenic Diet in Advanced Cancer" (clinical trial description)
http://www.cancer.gov/clinicaltrials/search/view?cdrid=742309&version=HealthProfessional
"The Ketogenic Diet for the Treatment of Malignant Glioma."
J Lipid Res. 2014 Feb 6
http://www.jlr.org/content/early/2014/02/06/jlr.R046797.abstract
"Excess sugar linked to cancer", February, 2013
Summary: Sugars are needed to provide us with energy and in moderate amounts contribute to our well-being. Sustained high levels of sugars, as is found in diabetics, damages our cells and now is shown that can also increase our chance to get cancer: The dose makes the poison as Paracelsus said.
http://www.sciencedaily.com/releases/2013/02/130201100149.htm
I will get my blood drawn again Friday - after the kidney infection is completely healed up and see what my numbers look like then. I also might ask my oncologist for lower chemo dose.
I was yesterday discouraged because I hoped eating low carb was going to make me as good as new
. It is a bit of a jolt to realize that even though I can't see the cancer, it has damaged my insides and the chemo causes a very low White Blood Count - it was the lowest it has been since I have been out of the hospital. I canceled some things this week so I don't get sick before my sons wedding on Saturday. My low white blood count is probably why I got that kidney infection, too.I actually prefer to eat low carb now - I eat much healthier and I eat a ton more vegetables. It isn't hard for me now that I have good recipes and snacks. I love not getting hungry - which is from the stable blood sugar. I find that the food I eat is delicious and it is no harder to cook this way than the way I cooked before.
Here are some articles about cancer and low carb diets, Jennifer. They are about cancer in general, not just multiple myeloma.
"Texas man fights terminal lung cancer without chemo using ketogenic diet"
http://www.examiner.com/article/texas-man-uses-low-carb-high-fat-ketogenic-diet-to-battle-terminal-lung-cancer
"Effects of a ketogenic diet on the quality of life in 16 patients with advanced cancer: A pilot trial"
Nutr Metab (Lond). 2011; 8: 54
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3157418/
"Ketogenic Diets: New Advances for Metabolism-Based Therapies"
Curr Opin Neurol. Apr 2012; 25(2): 173–178.
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4002181/
"Ketogenic Diet in Advanced Cancer" (clinical trial description)
http://www.cancer.gov/clinicaltrials/search/view?cdrid=742309&version=HealthProfessional
"The Ketogenic Diet for the Treatment of Malignant Glioma."
J Lipid Res. 2014 Feb 6
http://www.jlr.org/content/early/2014/02/06/jlr.R046797.abstract
"Excess sugar linked to cancer", February, 2013
Summary: Sugars are needed to provide us with energy and in moderate amounts contribute to our well-being. Sustained high levels of sugars, as is found in diabetics, damages our cells and now is shown that can also increase our chance to get cancer: The dose makes the poison as Paracelsus said.
http://www.sciencedaily.com/releases/2013/02/130201100149.htm
I will get my blood drawn again Friday - after the kidney infection is completely healed up and see what my numbers look like then. I also might ask my oncologist for lower chemo dose.
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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,
Once you and your body get used to the low carb lifestyle, you actually do prefer it because it helps you to feel better and not feel hungry. For people who haven't done it, its difficult for them to understand how you can avoid starches and sugar. But ... it can be done, and it isn't torture. As you mentioned, it's healthy, you eat lots of vegetables, and the food is delicious.
I'm sure you'll start feeling much better after that nasty kidney infection is gone
Speak to your oncologist about your concerns with the chemo etc. I am sure he/she will make any needed adjustments.
Enjoy your son's wedding on Saturday! Kick up your heels, dance and ENJOY!! You deserve it!!
God Bless,
Kim
Once you and your body get used to the low carb lifestyle, you actually do prefer it because it helps you to feel better and not feel hungry. For people who haven't done it, its difficult for them to understand how you can avoid starches and sugar. But ... it can be done, and it isn't torture. As you mentioned, it's healthy, you eat lots of vegetables, and the food is delicious.
I'm sure you'll start feeling much better after that nasty kidney infection is gone
Speak to your oncologist about your concerns with the chemo etc. I am sure he/she will make any needed adjustments.
Enjoy your son's wedding on Saturday! Kick up your heels, dance and ENJOY!! You deserve it!!
God Bless,
Kim
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Jerseygyrl - Name: Kim
- Who do you know with myeloma?: My Loved One
- When were you/they diagnosed?: February 2014
- Age at diagnosis: 58
Re: Ketogenic diet and multiple myeloma
Thanks for posting about your experiences with a ketogenic diet, Cathy. I hope it continues to go well for you.
In looking for information on the diet, I came across this review that is very detailed.
"More hype than science: Ketogenic diets for cancer"
http://scienceblogs.com/insolence/2014/06/24/more-hype-than-science-ketogenic-diets-for-cancer/
The article is written by Dr. David Gorski, a surgical oncologist at the Karmanos Cancer Center. Here's the Wikipedia article about him:
http://en.wikipedia.org/wiki/David_Gorski
Gorski's conclusion is that there is at best limited evidence in favor of a ketogenic diet having anti-cancer properties. He doesn't say there is no evidence, or even evidence suggesting it does not work. Instead, the evidence is, in his opinion, limited. "In the end, as with many hyped cancer cures, the ketogenic diet might be helpful for some tumors and almost certainly won’t be helpful for others."
One of the comments on the article points to this interesting paper,
"Understanding the "lethal" drivers of tumor-stroma co-evolution: emerging role(s) for hypoxia, oxidative stress and autophagy/mitophagy in the tumor micro-environment."
https://www.landesbioscience.com/journals/cbt/article/13370/
which describes a model of how cancer tumors evolve. If the model is valid, it would indicate that a ketogenic diet might actually encourage, not discourage, cancer cell growth:
"ketones and L-lactate ... help drive mitochondrial biogenesis in cancer cells, thereby promoting the anabolic growth of cancer cells (via an energy imbalance) ... [and] help "fuel" tumor growth and cancer cell metastasis and can act as chemo-attractants for cancer cells."
In looking for information on the diet, I came across this review that is very detailed.
"More hype than science: Ketogenic diets for cancer"
http://scienceblogs.com/insolence/2014/06/24/more-hype-than-science-ketogenic-diets-for-cancer/
The article is written by Dr. David Gorski, a surgical oncologist at the Karmanos Cancer Center. Here's the Wikipedia article about him:
http://en.wikipedia.org/wiki/David_Gorski
Gorski's conclusion is that there is at best limited evidence in favor of a ketogenic diet having anti-cancer properties. He doesn't say there is no evidence, or even evidence suggesting it does not work. Instead, the evidence is, in his opinion, limited. "In the end, as with many hyped cancer cures, the ketogenic diet might be helpful for some tumors and almost certainly won’t be helpful for others."
One of the comments on the article points to this interesting paper,
"Understanding the "lethal" drivers of tumor-stroma co-evolution: emerging role(s) for hypoxia, oxidative stress and autophagy/mitophagy in the tumor micro-environment."
https://www.landesbioscience.com/journals/cbt/article/13370/
which describes a model of how cancer tumors evolve. If the model is valid, it would indicate that a ketogenic diet might actually encourage, not discourage, cancer cell growth:
"ketones and L-lactate ... help drive mitochondrial biogenesis in cancer cells, thereby promoting the anabolic growth of cancer cells (via an energy imbalance) ... [and] help "fuel" tumor growth and cancer cell metastasis and can act as chemo-attractants for cancer cells."
Re: Ketogenic diet and multiple myeloma
Cathy,
I never would have expected a ketogenic diet to do miracles with myeloma, but you doctor has said you very well may have avoided becoming diabetic and did it with diet and exercise. That is a major accomplishment! Diabetes is a significant health problem itself and I feel would complicate treating your myeloma, so I feel indirectly your diet changes will help with your myeloma treatment. In addition, eating healthier as you are will help overall health in general.
I have been living with low WBC for a while now. My WBC has slowly declined over the last couple of years while on Revlimid and my usual results are between 2.0 to 2.6 and occasionally go below 2.0. Above 2.3, I do pretty well and continue doing everything I normally do without much concern. Below that, especially below 2.0, I do start to notice the effects of neutropenia and get sick easily and my Revlimid is stopped by my doctor. I only start to stress about my WBC when it goes below 2.0. Everyone’s overall health and immune system is unique to them however so that has to be taken into account with WBC numbers and what the doctor’s assessment of the situation is.
After reading another thread on the Beacon about those who have had myeloma who seemingly were doing OK, then passed away suddenly from infection, I am thinking I maybe need to be a bit more concerned and careful when my WBC takes its occasional dips below 2.0.
I never would have expected a ketogenic diet to do miracles with myeloma, but you doctor has said you very well may have avoided becoming diabetic and did it with diet and exercise. That is a major accomplishment! Diabetes is a significant health problem itself and I feel would complicate treating your myeloma, so I feel indirectly your diet changes will help with your myeloma treatment. In addition, eating healthier as you are will help overall health in general.
I have been living with low WBC for a while now. My WBC has slowly declined over the last couple of years while on Revlimid and my usual results are between 2.0 to 2.6 and occasionally go below 2.0. Above 2.3, I do pretty well and continue doing everything I normally do without much concern. Below that, especially below 2.0, I do start to notice the effects of neutropenia and get sick easily and my Revlimid is stopped by my doctor. I only start to stress about my WBC when it goes below 2.0. Everyone’s overall health and immune system is unique to them however so that has to be taken into account with WBC numbers and what the doctor’s assessment of the situation is.
After reading another thread on the Beacon about those who have had myeloma who seemingly were doing OK, then passed away suddenly from infection, I am thinking I maybe need to be a bit more concerned and careful when my WBC takes its occasional dips below 2.0.
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Eric Hofacket - Name: Eric H
- When were you/they diagnosed?: 01 April 2011
- Age at diagnosis: 44
Re: Ketogenic diet and multiple myeloma
Hey Eric & Kim,
Thanks for encouraging words. It is true that controlling diabetes is a pretty good accomplishment in itself and helps your body. I'll write what my cancer numbers are on Monday.
I think I figured out something important about WBC. (I will check with doctor on Monday to see if this is right).
Remember right after our Bone Marrow Transplant when we were in hospital eagerly watching our ANC - the Absolute Neutrophil Count? They told us the number each day? I think I figured how to calculate from our blood test - and it is a bit different from WBC.
Take your WBC x1000 then multiply that by your % neutrophil. For example, here are mine
Sept 10, 2013 WBC 2.19 = 2190 multiply by % neutrophil (46.3%) = ANC 1014
Mar 21 WBC 2.79 = 2790 multiply by % neutrophil (40.6%) = ANC 1133
April 28th WBC 3.1 = 3100 multiply by % neutrophil (50.2%) = ANC 1556
June 20 WBC 2.02 = 2020 Multiply by % neutrophil (68.2%) = ANC 1378
It made me realize that my ANC was worse on Sept 10 than it was June 20th - which was encouraging..
Also, Revlimid is now available in smaller doses - 2.5 mg is now available.
Thanks for encouraging words. It is true that controlling diabetes is a pretty good accomplishment in itself and helps your body. I'll write what my cancer numbers are on Monday.
I think I figured out something important about WBC. (I will check with doctor on Monday to see if this is right).
Remember right after our Bone Marrow Transplant when we were in hospital eagerly watching our ANC - the Absolute Neutrophil Count? They told us the number each day? I think I figured how to calculate from our blood test - and it is a bit different from WBC.
Take your WBC x1000 then multiply that by your % neutrophil. For example, here are mine
Sept 10, 2013 WBC 2.19 = 2190 multiply by % neutrophil (46.3%) = ANC 1014
Mar 21 WBC 2.79 = 2790 multiply by % neutrophil (40.6%) = ANC 1133
April 28th WBC 3.1 = 3100 multiply by % neutrophil (50.2%) = ANC 1556
June 20 WBC 2.02 = 2020 Multiply by % neutrophil (68.2%) = ANC 1378
It made me realize that my ANC was worse on Sept 10 than it was June 20th - which was encouraging..
Also, Revlimid is now available in smaller doses - 2.5 mg is now available.
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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 TerryH.
Everything I read said high blood glucose and high insulin seem to stimulate cancer cells
I consider myself an unofficial participant in my own "clinical trial". I get enough blood tests that I will know if I am going downhill and will then change my diet.
My inability to take antibiotics and my propensity to C-Diff mean that I might not qualify for a second bone marrow transplant - so I want to do everything I can do to prolong remission.
Everything I read said high blood glucose and high insulin seem to stimulate cancer cells
I consider myself an unofficial participant in my own "clinical trial". I get enough blood tests that I will know if I am going downhill and will then change my diet.
My inability to take antibiotics and my propensity to C-Diff mean that I might not qualify for a second bone marrow transplant - so I want to do everything I can do to prolong remission.
-
antelope1225 - Name: Cathy1225
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: May 25 2012
- Age at diagnosis: 55
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