Thanks, Cathy! Great info.
Best! BN
Forums
Re: Ketogenic diet and multiple myeloma
Hi Cathy,
I always read your posts with great interest, and I have great respect for your ability to control your diet so well and be so disciplined! Kudos to you!
I don't know if you can answer this question, and perhaps it is not even germane to the discussion, however, here goes!
I have a tendency to have low blood sugar. Even without fasting, my blood sugar can be in the 70's. I rarely break 100. I guess I am one of the lucky ones in terms of this aspect of my biology. I eat a pretty healthy diet, fruits and veggies, not very much in the way of junk food, a cookie here and there, ice cream or cake once in awhile. Not big on sweets. Although I do eat pasta, potatoes, rice and bread (primarily hi fiber, whole wheat stuff). I take a multivitamin without iron, 2,000 mg of fish oils and 2000 mg of vitamin D daily. I'm on Valtrex (valacyclovir) every other day as a preventive for shingles.
Diagnosed with IgA kappa light chain multiple myeloma in April, 2014. Induction with Revlimid, Velcade, and dexamethasone (RVD, followed by transplant in October, 2014. Stringent complete response (sCR). Did 6 months of maintenance with RVD (Velcade every other week, 5 mg of Revlimid, 21/7, 12 mgsdex). Since November, 2015 dropped the Revlimid due to side effects, continuing with the Velcade and dex. Maintaining response thus far.
My question to you, Cathy, is do you think it would be beneficial for controlling the myeloma to reduce sugars and carbs in my diet even though I have no blood sugar problems? I am always looking for ways to possibly prolong remission. This is probably not something you have thought about. Maybe there is some research you can recommend.
Thanks, and continued good health to you!
Ellen Harris
I always read your posts with great interest, and I have great respect for your ability to control your diet so well and be so disciplined! Kudos to you!
I don't know if you can answer this question, and perhaps it is not even germane to the discussion, however, here goes!
I have a tendency to have low blood sugar. Even without fasting, my blood sugar can be in the 70's. I rarely break 100. I guess I am one of the lucky ones in terms of this aspect of my biology. I eat a pretty healthy diet, fruits and veggies, not very much in the way of junk food, a cookie here and there, ice cream or cake once in awhile. Not big on sweets. Although I do eat pasta, potatoes, rice and bread (primarily hi fiber, whole wheat stuff). I take a multivitamin without iron, 2,000 mg of fish oils and 2000 mg of vitamin D daily. I'm on Valtrex (valacyclovir) every other day as a preventive for shingles.
Diagnosed with IgA kappa light chain multiple myeloma in April, 2014. Induction with Revlimid, Velcade, and dexamethasone (RVD, followed by transplant in October, 2014. Stringent complete response (sCR). Did 6 months of maintenance with RVD (Velcade every other week, 5 mg of Revlimid, 21/7, 12 mgsdex). Since November, 2015 dropped the Revlimid due to side effects, continuing with the Velcade and dex. Maintaining response thus far.
My question to you, Cathy, is do you think it would be beneficial for controlling the myeloma to reduce sugars and carbs in my diet even though I have no blood sugar problems? I am always looking for ways to possibly prolong remission. This is probably not something you have thought about. Maybe there is some research you can recommend.
Thanks, and continued good health to you!
Ellen Harris
Re: Ketogenic diet and multiple myeloma
Hi Ellen.
Sorry I am so late to respond! I can relate to a lot of your story. I was diagnosed May 2012, was on the same Revlimid, Velcade, and dexamethasone for induction, and I had an autologous stem cell transplant in November 2012 (you had yours October 2014). I take acyclovir twice a day also.
I would think your naturally low blood glucose would be very helpful in prolonging your remission. I would still avoid sweets and I am a big believer in charting all your blood test results with notes so you can see if something is helping or causing problems. The tricky part of that is to try to only change one thing at a time between blood tests. I have blood tests every 6 weeks so I can have the feedback.
By the way, the araboxylan (MGN-3) didn't seem to make much of a difference in my WBC's, so I am not taking it right now. I will see if there is any change in my next blood test without it.
In addition to eating low carb and moderate protein, these are things that I do to try to prolong my remission:
BAD (things I avoid):
1. Myeloma specialist Dr. James Berenson says #1 tip is get rid of the artificial sweeteners (especially aspartame) - when pressed to clarify, he said a little stevia is OK.
2.MSG and other sources of free glutamate - Can't always be perfect - I still have little soy sauce
3. L- glutamine, glucosamine, soft gels (supplements)
4. I no longer color my hair and actually like my natural brown & gray
5. I don't use hyaluronic acid - which is in wrinkle creams like oil of Olay.
6. Iron
GOOD things:
1.I take curcumin - about 6 grams per day with some fat
2. I take vitamin D (1000 mg)
3. Fish oil - since I try to avoid soft gels, I put a bit of Carlson's liquid fish oil in my smoothie
4. Resveratrol - there is a new more easily absorbed version that I use called Transmax I think.
5. Magnesium at night
6. Probiotics
7. I make a smoothie every morning with most of these (except onion & garlic) - I use a few frozen of each: After my smoothie is blended, I put a few finely chopped walnuts or raw sunflower seeds on it and stir it in - I like the crunch.
Pocket Guide - eat daily
Brussels sprouts 1/2 c uncooked
Broccoli, cauliflower, cabbage 1/2 c uncooked
Garlic 2 cloves
Onions, shallots ½ c uncooked
Spinach, watercress ½ c uncooked
Freshly ground flax seed 1 T
Tumeric 1 T (this is source of Curcumin)
Black pepper ½ tsp
Blueberries, raspberries, blackberries 1/2c
Cranberries ½
Dark chocolate 1.5 oz
Green tea 8 oz 3 c
Red wine (pinot noir) 1 glass
Coconut oil cook with
Ginger 1 sm square
Avocado 1/2 per day
I hope this gives you a few ideas, Ellen, we need to encourage each other. I appreciate hearing ideas, too.
Good health and blessings to you, too
Cathy
Sorry I am so late to respond! I can relate to a lot of your story. I was diagnosed May 2012, was on the same Revlimid, Velcade, and dexamethasone for induction, and I had an autologous stem cell transplant in November 2012 (you had yours October 2014). I take acyclovir twice a day also.
I would think your naturally low blood glucose would be very helpful in prolonging your remission. I would still avoid sweets and I am a big believer in charting all your blood test results with notes so you can see if something is helping or causing problems. The tricky part of that is to try to only change one thing at a time between blood tests. I have blood tests every 6 weeks so I can have the feedback.
By the way, the araboxylan (MGN-3) didn't seem to make much of a difference in my WBC's, so I am not taking it right now. I will see if there is any change in my next blood test without it.
In addition to eating low carb and moderate protein, these are things that I do to try to prolong my remission:
BAD (things I avoid):
1. Myeloma specialist Dr. James Berenson says #1 tip is get rid of the artificial sweeteners (especially aspartame) - when pressed to clarify, he said a little stevia is OK.
2.MSG and other sources of free glutamate - Can't always be perfect - I still have little soy sauce
3. L- glutamine, glucosamine, soft gels (supplements)
4. I no longer color my hair and actually like my natural brown & gray
5. I don't use hyaluronic acid - which is in wrinkle creams like oil of Olay.
6. Iron
GOOD things:
1.I take curcumin - about 6 grams per day with some fat
2. I take vitamin D (1000 mg)
3. Fish oil - since I try to avoid soft gels, I put a bit of Carlson's liquid fish oil in my smoothie
4. Resveratrol - there is a new more easily absorbed version that I use called Transmax I think.
5. Magnesium at night
6. Probiotics
7. I make a smoothie every morning with most of these (except onion & garlic) - I use a few frozen of each: After my smoothie is blended, I put a few finely chopped walnuts or raw sunflower seeds on it and stir it in - I like the crunch.
Pocket Guide - eat daily
Brussels sprouts 1/2 c uncooked
Broccoli, cauliflower, cabbage 1/2 c uncooked
Garlic 2 cloves
Onions, shallots ½ c uncooked
Spinach, watercress ½ c uncooked
Freshly ground flax seed 1 T
Tumeric 1 T (this is source of Curcumin)
Black pepper ½ tsp
Blueberries, raspberries, blackberries 1/2c
Cranberries ½
Dark chocolate 1.5 oz
Green tea 8 oz 3 c
Red wine (pinot noir) 1 glass
Coconut oil cook with
Ginger 1 sm square
Avocado 1/2 per day
I hope this gives you a few ideas, Ellen, we need to encourage each other. I appreciate hearing ideas, too.
Good health and blessings to you, too
Cathy
-
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
An update on natural methods to help control multiple myeloma.
I had my blood work on September 2, but had a death in my immediate family, so I am late in writing this report.
During the 8 weeks between my last blood test and the one on September 2, I continued ketogenic diet, taking sea cucumber and no prescriptions except acyclovir 2x per day AND I did following:
1. I fasted 22 hours 3 times and quit eating breakfast most weekdays for about the last 3 weeks before my blood test (more on "intermittent fasting" below)
2. I quit taking the MBN-2 because it was very expensive and I didn't see results
3. I started taking 1 Protandim in the morning and 1 ashwagandha in the evening and am sleeping better.
AND my kidney numbers were the best they have been since I was diagnosed with multiple myeloma 4 1/2 years ago.
My creatinine clearance (estimate of how much kidneys are functioning) was up to 48.5; it was down to 20 before my autologous stem cell transplant and never above 46 since.
BUN was still high but down from 30 to 28,
Creatinine was down to 1.13! That is in the NORMAL range!
Kappa free light chain level was 22.6 mg/L, ratio was 1.26 (normal).
Six months ago I had said to my oncologist that controlling blood glucose and keeping protein intake moderate seemed to be the key. He said I should look at ways to reduce fasting insulin levels. I found out that, apparently, cancer cells can have up to ten times more insulin receptors than normal cells. Intermittent fasting (even just skipping breakfast and not eating between dinner and the next day's lunch) gradually lowers insulin levels and IGF-1 (insulin-like growth factor 1). So, that was my experiment and I was very pleased with my results from just a month of trying to do intermittent fasting. By the way, even stevia causes insulin to go up, so I am trying to develop a taste for coffee with cream and coconut oil but no sweeteners.
Cathy
I had my blood work on September 2, but had a death in my immediate family, so I am late in writing this report.
During the 8 weeks between my last blood test and the one on September 2, I continued ketogenic diet, taking sea cucumber and no prescriptions except acyclovir 2x per day AND I did following:
1. I fasted 22 hours 3 times and quit eating breakfast most weekdays for about the last 3 weeks before my blood test (more on "intermittent fasting" below)
2. I quit taking the MBN-2 because it was very expensive and I didn't see results
3. I started taking 1 Protandim in the morning and 1 ashwagandha in the evening and am sleeping better.
AND my kidney numbers were the best they have been since I was diagnosed with multiple myeloma 4 1/2 years ago.
My creatinine clearance (estimate of how much kidneys are functioning) was up to 48.5; it was down to 20 before my autologous stem cell transplant and never above 46 since.
BUN was still high but down from 30 to 28,
Creatinine was down to 1.13! That is in the NORMAL range!
Kappa free light chain level was 22.6 mg/L, ratio was 1.26 (normal).
Six months ago I had said to my oncologist that controlling blood glucose and keeping protein intake moderate seemed to be the key. He said I should look at ways to reduce fasting insulin levels. I found out that, apparently, cancer cells can have up to ten times more insulin receptors than normal cells. Intermittent fasting (even just skipping breakfast and not eating between dinner and the next day's lunch) gradually lowers insulin levels and IGF-1 (insulin-like growth factor 1). So, that was my experiment and I was very pleased with my results from just a month of trying to do intermittent fasting. By the way, even stevia causes insulin to go up, so I am trying to develop a taste for coffee with cream and coconut oil but no sweeteners.
Cathy
-
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, so happy for you! You took your health into your own hands, did your own research, and proved by your own example how effective the results can be!
I hope more and more people read your posts and try following your findings. I always knew that ketogenic diet should help, but you went ahead with your research and persistently achieved results. That should give hope to so many people who can be as disciplined as you are. It's not easy to do, but the results are so worth it!
Hope to see many more encouraging posts from you!
Lana
I hope more and more people read your posts and try following your findings. I always knew that ketogenic diet should help, but you went ahead with your research and persistently achieved results. That should give hope to so many people who can be as disciplined as you are. It's not easy to do, but the results are so worth it!
Hope to see many more encouraging posts from you!
Lana
-
Lana
Re: Ketogenic diet and multiple myeloma
Cathy,
Thank you for sharing so much great info. I was diagnosed on Monday. I actually started a ketogenic diet the Wednesday before because I had a suspicion I would soon be diagnosed (you can read more about my diagnosis and what led up to it in this forum thread.)
I just bought some ketone strips (urine) and a glucose meter. Looking forward to sharing / learning more.
Much Love
Thank you for sharing so much great info. I was diagnosed on Monday. I actually started a ketogenic diet the Wednesday before because I had a suspicion I would soon be diagnosed (you can read more about my diagnosis and what led up to it in this forum thread.)
I just bought some ketone strips (urine) and a glucose meter. Looking forward to sharing / learning more.
Much Love
-
PositiveChris - Name: Chris
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: 11/28/2016
- Age at diagnosis: 42
Re: Ketogenic diet and multiple myeloma
Hi myeloma friends. 
I have continued my ketogenic diet, sea cucumber, and intermittent fasting (skip breakfast). My kappa had gone up in a bit of a spike last March and then came back down when I added sea cucumber to my regimen. My kappa hovered above normal, but the ratio was in the normal range until my appointment last week. At that time, my kappa was a bit higher than last March, and my ratio was a bit high and my WBC count was down to 2.68. So my oncologist has me redoing all tests - including a 24-hour urine (which is really hard to do at work – I kept my jug in the car and it is cold outside).
Next Monday I will meet with my oncologist and see how things look. I have had 18 months with no drugs except acyclovir. That was such a nice break! If my numbers are still elevated next Monday it will be time to make some decisions. I took Revlimid for over 2 years after my autologous stem cell transplant. But, I was sick a lot when on Revlimid - had a urinary tract infection (UTI) six times in one year and had to go on antibiotics seven times that year. Since I quit taking Revlimid, I have only had one UTI and only taken antibiotics one time in 18 months. That makes me lean toward trying Velcade or one of the newer proteasome inhibitors (Kyprolis?) rather than Velcade.
I would recommend the ketogenic diet for anyone who feels up to trying it.
I will post the results next Tuesday after I talk to my oncologist.
Thank you to all who write on here - for all your encouragement (to me and to others). I have not written on this forum recently, but I have read other posts.
Merry Christmas,
Cathy
I have continued my ketogenic diet, sea cucumber, and intermittent fasting (skip breakfast). My kappa had gone up in a bit of a spike last March and then came back down when I added sea cucumber to my regimen. My kappa hovered above normal, but the ratio was in the normal range until my appointment last week. At that time, my kappa was a bit higher than last March, and my ratio was a bit high and my WBC count was down to 2.68. So my oncologist has me redoing all tests - including a 24-hour urine (which is really hard to do at work – I kept my jug in the car and it is cold outside).
Next Monday I will meet with my oncologist and see how things look. I have had 18 months with no drugs except acyclovir. That was such a nice break! If my numbers are still elevated next Monday it will be time to make some decisions. I took Revlimid for over 2 years after my autologous stem cell transplant. But, I was sick a lot when on Revlimid - had a urinary tract infection (UTI) six times in one year and had to go on antibiotics seven times that year. Since I quit taking Revlimid, I have only had one UTI and only taken antibiotics one time in 18 months. That makes me lean toward trying Velcade or one of the newer proteasome inhibitors (Kyprolis?) rather than Velcade.
I would recommend the ketogenic diet for anyone who feels up to trying it.
I will post the results next Tuesday after I talk to my oncologist.
Thank you to all who write on here - for all your encouragement (to me and to others). I have not written on this forum recently, but I have read other posts.
Merry Christmas,
Cathy
-
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 all,
I have been reading with interest. My mumma has multiple myeloma and we are just waiting to find out the level of remission following a stem cell transplant.
Many thanks, and have a wonderful Christmas,
Melanie
I have been reading with interest. My mumma has multiple myeloma and we are just waiting to find out the level of remission following a stem cell transplant.
Many thanks, and have a wonderful Christmas,
Melanie
-
Melaniesn
Re: Ketogenic diet and multiple myeloma
I am reporting in after my appointment yesterday.
As everyone with multiple myeloma knows, waiting 2 weeks for new test results - especially when the onc is concerned is nerve wracking.
But the news was good Kappa's came down to 3.05 mg/dL and my ratio was down to 1.51 - in the acceptable range, again. I am still out of the normal range in 11 areas tested, but even most of those were better, and I am typically off in at least 10 of those.
Why did my results improve? I had the flu in mid November, so that might have effected my blood test taken on Nov 28. Also, Nov 28 was Monday morning after Thanksgiving weekend - and I ate more than usual over the holidays. Also, I was taking Ashwagandha (mostly to help me sleep) and I quit that right after the blood test.
So, my onc and I agreed that I would come back in 6 weeks, as usual, but not start any new prescription right now. He also said Velcade comes in pill form now.
I have tried to search for information on Genistein (from soy), and mushroom extracts, but must not be doing the search right. I did better to go to the home page and put the name in the search bar there. I could not find anything by searching through the forum. Am I doing something wrong in searching?
Merry Christmas.
Cathy
As everyone with multiple myeloma knows, waiting 2 weeks for new test results - especially when the onc is concerned is nerve wracking.
But the news was good Kappa's came down to 3.05 mg/dL and my ratio was down to 1.51 - in the acceptable range, again. I am still out of the normal range in 11 areas tested, but even most of those were better, and I am typically off in at least 10 of those.
Why did my results improve? I had the flu in mid November, so that might have effected my blood test taken on Nov 28. Also, Nov 28 was Monday morning after Thanksgiving weekend - and I ate more than usual over the holidays. Also, I was taking Ashwagandha (mostly to help me sleep) and I quit that right after the blood test.
So, my onc and I agreed that I would come back in 6 weeks, as usual, but not start any new prescription right now. He also said Velcade comes in pill form now.
I have tried to search for information on Genistein (from soy), and mushroom extracts, but must not be doing the search right. I did better to go to the home page and put the name in the search bar there. I could not find anything by searching through the forum. Am I doing something wrong in searching?
Merry Christmas.
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
Hi, Cathy!
Glad the results got back better. Hope you get good news in 6 weeks! Merry Christmas!
Lana
Glad the results got back better. Hope you get good news in 6 weeks! Merry Christmas!
Lana
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Lana
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