Hi Cathy. My situation mirrors yours, with the exception of light chains -- I'm lambda. I'm fighting the same demons, low WBC and platelets, rising creatinine, and Revlimid side effects. My appetite is close to nil and it leads me to lean on sweets for energy and that, it seems, might be a viscous circle.
I'm going to look into a diet such as yours. I would certainly like to see positive movement. After my SCT, I remained in remission for 3 1/2 years with no maintenance, but it all ended in March and I would like to get back to that life.
Forums
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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: Ketogenic diet and multiple myeloma
Hi Wayne,
I am glad you are going to try the diet and hope it will push you back into remission. I ordered the book by Dr Thomas Seyfried because the interview with him amazed me. I will let you know what I learn from the book.
I am sure you saw that my cancer markers (kappa free light chains) started going down right after I started trying to eat low carb - but I was really worried I was screwing up my kidneys. To my surprise, my kidneys have improved significantly. My KFLC numbers in November were not as good as the previous 4 blood tests, so I started to go back to what I did originally (count carbs and test my blood glucose regularly during the day)
One thing you need to be braced for is that the first month is the hardest because you are transitioning over from your body living off glucose to living off fat. If you have a cup of bouillon a few times a day so you get extra sodium and it helps. Once you have transitioned over, it is not hard to stay away from carbs for the most part.
Dr. Seyfried says:
Good luck.
I am glad you are going to try the diet and hope it will push you back into remission. I ordered the book by Dr Thomas Seyfried because the interview with him amazed me. I will let you know what I learn from the book.
I am sure you saw that my cancer markers (kappa free light chains) started going down right after I started trying to eat low carb - but I was really worried I was screwing up my kidneys. To my surprise, my kidneys have improved significantly. My KFLC numbers in November were not as good as the previous 4 blood tests, so I started to go back to what I did originally (count carbs and test my blood glucose regularly during the day)
One thing you need to be braced for is that the first month is the hardest because you are transitioning over from your body living off glucose to living off fat. If you have a cup of bouillon a few times a day so you get extra sodium and it helps. Once you have transitioned over, it is not hard to stay away from carbs for the most part.
Dr. Seyfried says:
That’s basically trying to break your addiction to glucose. The removal of glucose from the brain elicits the same kind of problems or events as you would if you were addicted to drugs, alcohol, or something like this. You get malaise. You get headaches. You get nausea. You get lightheadedness. You get all the kinds of physiological effects that you would get from withdrawal of any addicting substance.
I look at glucose as an addictive substance"
Good luck.
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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
Hey Ron.
You asked if I had changed any supplements since last labs and I couldn't think of anything. But last night I was using a melatonin spray that I bought about a month ago. You spray it under the tongue at bedtime. I noticed (last night) that it was sweet and looked at ingredients. It has "vegetable glycerin", which I looked up and found is a sugar alcohol - a carbohydrate with more calories than sugar. I wonder if that has been what messed up my results!? I will quit using that and see if my blood glucose stays low more consistently.
You asked if I had changed any supplements since last labs and I couldn't think of anything. But last night I was using a melatonin spray that I bought about a month ago. You spray it under the tongue at bedtime. I noticed (last night) that it was sweet and looked at ingredients. It has "vegetable glycerin", which I looked up and found is a sugar alcohol - a carbohydrate with more calories than sugar. I wonder if that has been what messed up my results!? I will quit using that and see if my blood glucose stays low more consistently.
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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,
I don't think it would be enough to do it, but it brings up an interesting area regarding melatonin. I have tried to research this and have found pros and cons as far as blood dycrasias are concerned. Since I could not get a satisfactory answer, I decided against using melatonin for now.
I don't think it would be enough to do it, but it brings up an interesting area regarding melatonin. I have tried to research this and have found pros and cons as far as blood dycrasias are concerned. Since I could not get a satisfactory answer, I decided against using melatonin for now.
Re: Ketogenic diet and multiple myeloma
Kathy,
I was baffled why you were surprised your kidney function improved with the change to the ketogenic diet, but maybe I am a bit confused about the ketogenic diet and what you are doing.
It is my understanding that controlling blood sugar and keeping glucose in the normal range is a good thing for kidney health, and it seems the ketogenic diet can do just that -- and did for you in your case. But then I just read where too many calories from protein can damage the kidneys as well, so maybe that was why you were surprised you showed improve kidney function.
In any case, I feel keeping blood sugar in the normal range is good for the kidneys and good kidney health is something important for those with myeloma. Whether keeping blood sugar in the normal range using a ketogenic diet that is really high in protein is a good thing or not for the kidneys, I really do not know. Seems in your case it has not caused a problem so far.
If the ketogenic diet is helping fight your myeloma, how would you ever really know? You can never know on an individual basis, especially when on other treatment drugs and given how myeloma behaves. What would have happened taking the other path not following the ketogenic diet? That is why statistically significant clinical trial populations are needed to make any definitive conclusions about a drug or treatment. Has there been any clinical trial study myeloma and the ketogenic diet?
I was baffled why you were surprised your kidney function improved with the change to the ketogenic diet, but maybe I am a bit confused about the ketogenic diet and what you are doing.
It is my understanding that controlling blood sugar and keeping glucose in the normal range is a good thing for kidney health, and it seems the ketogenic diet can do just that -- and did for you in your case. But then I just read where too many calories from protein can damage the kidneys as well, so maybe that was why you were surprised you showed improve kidney function.
In any case, I feel keeping blood sugar in the normal range is good for the kidneys and good kidney health is something important for those with myeloma. Whether keeping blood sugar in the normal range using a ketogenic diet that is really high in protein is a good thing or not for the kidneys, I really do not know. Seems in your case it has not caused a problem so far.
If the ketogenic diet is helping fight your myeloma, how would you ever really know? You can never know on an individual basis, especially when on other treatment drugs and given how myeloma behaves. What would have happened taking the other path not following the ketogenic diet? That is why statistically significant clinical trial populations are needed to make any definitive conclusions about a drug or treatment. Has there been any clinical trial study myeloma and the ketogenic diet?
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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
Hi Eric.
I never had a good remission. My light chains started up almost immediately- they were out of normal range about 2 months after the transplant. That is not good - it means my cancer was not knocked out by the transplant. When I was first diagnosed, I had stage III myeloma and stage IV chronic kidney disease. When I was first diagnosed, I looked on cancer.org. They said the median survival for someone in stage III was 27 months. That is not very long. I have no illusions that this is a cure. I know that at best I am adding another year or two to my life, but it is worth it to me. I have 5 grandchildren and I would love to have them have some memories of me.
My oncologist said that keeping my blood sugar low and steady could prolong remission. He told me to go get a good diabetes diet and follow it. So I went on Amazon and found "Diabetes Solution" and followed it as perfectly as I could.
They were testing my blood every month anyway, so if I were causing problems with this diet, I would know it. I decided that if I added one good year to my life, it was worth the effort.
A friend from this forum sends me emails with links - she just sent one where they have found that myeloma cells have more glucose receptors on their outer membrane than normal lymphocytes.
Want me to put the link in here?
Cathy
I never had a good remission. My light chains started up almost immediately- they were out of normal range about 2 months after the transplant. That is not good - it means my cancer was not knocked out by the transplant. When I was first diagnosed, I had stage III myeloma and stage IV chronic kidney disease. When I was first diagnosed, I looked on cancer.org. They said the median survival for someone in stage III was 27 months. That is not very long. I have no illusions that this is a cure. I know that at best I am adding another year or two to my life, but it is worth it to me. I have 5 grandchildren and I would love to have them have some memories of me.
My oncologist said that keeping my blood sugar low and steady could prolong remission. He told me to go get a good diabetes diet and follow it. So I went on Amazon and found "Diabetes Solution" and followed it as perfectly as I could.
They were testing my blood every month anyway, so if I were causing problems with this diet, I would know it. I decided that if I added one good year to my life, it was worth the effort.
A friend from this forum sends me emails with links - she just sent one where they have found that myeloma cells have more glucose receptors on their outer membrane than normal lymphocytes.
Want me to put the link in here?
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
I really think there is a lot to be gained by increasing your body's own adiponectin to fight the myeloma. When you lose body fat, your adiponectin rises and the fat in the bone marrow increases and produces more of it, and, conversely, when there are an excess of fat cells, the adiponectin falls and the bone marrow fat decreases. This seemed like a good reason for me to lose that carb belly.
Re: Ketogenic diet and multiple myeloma
3 books I have read or are reading that are excellent:
1. "Ketogenic diets - Treatments for Epilepsy and Other Disorders" by 4 doctors at Johns Hopkins - Kossoff, Freeman, Turner, Rubenstein. This is an easy read because it is written by the doctors for parents of epileptic children. One interesting thing was that even toothpaste, cough syrup etc can interfere with ketosis.
2."Cancer as a Metabolic Disease - On the Origin, management and prevention of Cancer" by Thomas Seyfried. Much heavier reading but he is passionate about subject and writes well. Ch 18 tells how to implement what he has learned and Ch 20 is case studies.
3.Tripping over the Truth - by Travis Christofferson. Copywrite is 2014. Engrossing reading! He tells history of cancer study culminating in Appendix A "Putting Metabolic Therapies to Work"
1. "Ketogenic diets - Treatments for Epilepsy and Other Disorders" by 4 doctors at Johns Hopkins - Kossoff, Freeman, Turner, Rubenstein. This is an easy read because it is written by the doctors for parents of epileptic children. One interesting thing was that even toothpaste, cough syrup etc can interfere with ketosis.
2."Cancer as a Metabolic Disease - On the Origin, management and prevention of Cancer" by Thomas Seyfried. Much heavier reading but he is passionate about subject and writes well. Ch 18 tells how to implement what he has learned and Ch 20 is case studies.
3.Tripping over the Truth - by Travis Christofferson. Copywrite is 2014. Engrossing reading! He tells history of cancer study culminating in Appendix A "Putting Metabolic Therapies to Work"
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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 see you have had a lot of challenges fighting your myeloma and that it has never let up. It is my understanding that diabetic diets are pretty healthy for everyone, not just diabetics, and are better than what most people are eating already. A diabetic diet certainly seems to have helped you a lot with kidney disease, which is not a small thing. Going to the extreme in cutting out sugar and carbs would be an Atkins-type diet, which was really popular and many were trying about 15 years ago. I do not know if an Atkins diet is good for diabetes or could be expected to help fight myeloma or not.
Best wishes,
Eric
I see you have had a lot of challenges fighting your myeloma and that it has never let up. It is my understanding that diabetic diets are pretty healthy for everyone, not just diabetics, and are better than what most people are eating already. A diabetic diet certainly seems to have helped you a lot with kidney disease, which is not a small thing. Going to the extreme in cutting out sugar and carbs would be an Atkins-type diet, which was really popular and many were trying about 15 years ago. I do not know if an Atkins diet is good for diabetes or could be expected to help fight myeloma or not.
Best wishes,
Eric
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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, I thought of you when I saw the posting below in "Minnesota Don's" blog. I think Pomalyst was developed after Revlimid and might have a different way of fighting multiple myeloma.
ASH Monday December 8, 2014
Dr M Q Lacy, of the Mayo Clinic in Rochester, MN, presented the results of a small phase I/II study of Pomalyst with Velcade and dexamethasone (PVD) for 42 patients who had prior Revlimid but for whom Revlimid was no longer working. Many had other prior regimens as well; two thirds had a prior stem cell transplant, and more than half had prior Velcade. The results are startling.
Overall response in these relapsed and refractory patients was 81%, including 82% of the high-risk patients. A complete response (CR) was seen in 19%, including a stringent CR in two patients. At 9 months, 72% were progression free, and the median progression-free period was a year and a half.
Quoting from the abstract: "PVD is a highly attractive option in patients with relapsed and refractory multiple myeloma
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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
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