Thanks Lana!
Happy New Year.
Cathy
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 always check this thread when I log in to see what's new. This is a very active and interesting subject because intuitively we all know food is medicine and medicine is thy food. You are definitely onto something with reducing glucose, increasing fats, fasting, and finding the right foods and supplements to suppress myeloma. My goal this coming year is to commit my diet to closely follow this plan. I wish you perfect health in 2017. Thank you again for your posts and keep posting!
Melissa
I always check this thread when I log in to see what's new. This is a very active and interesting subject because intuitively we all know food is medicine and medicine is thy food. You are definitely onto something with reducing glucose, increasing fats, fasting, and finding the right foods and supplements to suppress myeloma. My goal this coming year is to commit my diet to closely follow this plan. I wish you perfect health in 2017. Thank you again for your posts and keep posting!
Melissa
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Melpen - Name: Melissa
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: Feb 5, 2014
- Age at diagnosis: 57
Re: Ketogenic diet and multiple myeloma
OK, time for an update. 
A quick refresher is that I have Light Chain Deposition Disease - so I have to watch my kappa light chains carefully. I also had ASCT in Nov 2012 and did not have a good response, so I took Revlimid every other day for a couple of years - sometimes at 5 mg and sometimes at 10 mg. Then I started ketogenic diet in March 2014 and was able to get down to 5 mg Revlimid once a week. Then I completely quit Revlimid in about June 2015. So, I have continued keto diet the whole time and I eat no more than 2 oz meat twice a day and I try to avoid MSG and artificial sweeteners except Stevia, Erythritol and Truvia - which is a mixture of the 2.
March 2016 my ratio spiked above 1.6 (1.86) and I started to take sea cucumber. That worked pretty well until right after Thanksgiving when it got back up to 1.74. My oncologist started urging me to go back on Revlimid, but my friend and I had a couple more things to try. I am not opposed to going back on Revlimid except that I will develop drug resistance to that, so it will only work a while and I want to save that for when I can't find anything else that will work.
So, Dec 2 I started taking 4 wobenzyme first thing in the morning on an empty stomach. Then I took a couple of different mushroom extracts that are supposed to build your immune system. I took AHCC and maitake - then changed to MGN-3 again (took that last summer for one month) and beta glucan. The last thing I started taking was researched at Purdue - it is from the bark of an American tree and is called PawPaw.
My numbers are better again! My ratio is back down to 1.44, my creatinine is down to 1.7, BUN is down to 23 (first time it has been normal since I got multiple myeloma) and my cclearance is above 46. So, Thank you, Lord!!!
A quick refresher is that I have Light Chain Deposition Disease - so I have to watch my kappa light chains carefully. I also had ASCT in Nov 2012 and did not have a good response, so I took Revlimid every other day for a couple of years - sometimes at 5 mg and sometimes at 10 mg. Then I started ketogenic diet in March 2014 and was able to get down to 5 mg Revlimid once a week. Then I completely quit Revlimid in about June 2015. So, I have continued keto diet the whole time and I eat no more than 2 oz meat twice a day and I try to avoid MSG and artificial sweeteners except Stevia, Erythritol and Truvia - which is a mixture of the 2.
March 2016 my ratio spiked above 1.6 (1.86) and I started to take sea cucumber. That worked pretty well until right after Thanksgiving when it got back up to 1.74. My oncologist started urging me to go back on Revlimid, but my friend and I had a couple more things to try. I am not opposed to going back on Revlimid except that I will develop drug resistance to that, so it will only work a while and I want to save that for when I can't find anything else that will work.
So, Dec 2 I started taking 4 wobenzyme first thing in the morning on an empty stomach. Then I took a couple of different mushroom extracts that are supposed to build your immune system. I took AHCC and maitake - then changed to MGN-3 again (took that last summer for one month) and beta glucan. The last thing I started taking was researched at Purdue - it is from the bark of an American tree and is called PawPaw.
My numbers are better again! My ratio is back down to 1.44, my creatinine is down to 1.7, BUN is down to 23 (first time it has been normal since I got multiple myeloma) and my cclearance is above 46. So, Thank you, Lord!!!
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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
A quick update.
My kappa free light chain numbers were up after 3 months of paw paw, so I quit taking. Still taking AHCC, Maitake drops, EGCG, rice bran arabinoxylan, and selenium.
My new experiment is oxaloacetate. I will write what impact it has after a few months.
Still eating a ketogenic diet and still doing well with no prescriptions.
Cathy
My kappa free light chain numbers were up after 3 months of paw paw, so I quit taking. Still taking AHCC, Maitake drops, EGCG, rice bran arabinoxylan, and selenium.
My new experiment is oxaloacetate. I will write what impact it has after a few months.
Still eating a ketogenic diet and still doing well with no prescriptions.
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
Interestingly enough, when my husband relapsed, his M numbers progressed really fast. He started a ketogenic diet. A few weeks later, the progression of lambda chain suddenly stopped. We did not continue the diet since it was really difficult for him not to eat any carbs and he started losing weight pretty quickly. We also started treatment, so will be keeping an eye on it now.
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noway - Name: Noway
- Who do you know with myeloma?: Husband
- Age at diagnosis: 56
Re: Ketogenic diet and multiple myeloma
I love fruit and whole grains and am not sure I could cut those out. They are part of what keeps me feeling good. Cutting out processed food and sugar is always a good idea, cancer or no cancer. I've always been so healthy and I still got myeloma. There's a guy at work (in his late 60's, lifetime bachelor). He ate a candy bar and Cheetos every morning for breakfast and a greasy cheese burger and French fries and a coke for lunch, and never got cancer. Go figure!
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Janet1520
Re: Ketogenic diet and multiple myeloma
Hi noway,
I can imagine how scary it would feel to have your husband's multiple myeloma progressing and weight coming off, too. I was stable when I first started the diet and I have not gained or lost more than one or two pounds in 3 1/2 years. You might just try cutting out sweets and eating more avocados etc.
Hi Janet1520,
It doesn't seem fair that we live a healthy life and get multiple myeloma! I never smoked and I lived a healthy lifestyle before I got diagnosed, too. I thought this article in the Beacon was good, about randomness in multiple myeloma:
Williams, T, "Myeloma Rocket Scientist: Randomness In Multiple Myeloma," The Myeloma Beacon, May 25, 2017
By the way, I quit the oxaloacetate. It was interfering with my sleep. Next blood test will be at the end of July and then I will see how things are going. My kappa/lambda ratio was up a bit each of the last 2 blood tests, so I am anxious to see if they are progressing..
Hope you are having a good summer.
C
I can imagine how scary it would feel to have your husband's multiple myeloma progressing and weight coming off, too. I was stable when I first started the diet and I have not gained or lost more than one or two pounds in 3 1/2 years. You might just try cutting out sweets and eating more avocados etc.
Hi Janet1520,
It doesn't seem fair that we live a healthy life and get multiple myeloma! I never smoked and I lived a healthy lifestyle before I got diagnosed, too. I thought this article in the Beacon was good, about randomness in multiple myeloma:
Williams, T, "Myeloma Rocket Scientist: Randomness In Multiple Myeloma," The Myeloma Beacon, May 25, 2017
By the way, I quit the oxaloacetate. It was interfering with my sleep. Next blood test will be at the end of July and then I will see how things are going. My kappa/lambda ratio was up a bit each of the last 2 blood tests, so I am anxious to see if they are progressing..
Hope you are having a good summer.
C
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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
A quick update.
My ratio is back down in the normal range. I am not taking any myeloma drug. The only prescriptions I take are a sodium bicarb, and Mag 64 from kidney doctor.
Last Thursday, my oncologist told me that I am the second most stable myeloma patient he has. The only one more stable is on Revlimid. I told him that if my ratio had gone up, I was willing to consider Revlimid again (I have been off for over 2 years). He said he would have argued with me that I should not go back on it at this time. I laughed and asked why. He said, "Look at your kidney numbers!"
I have multiple myeloma and light chain deposition disease and the biopsy of my kidney analyzed by Mayo Clinic in May 2012 showed 75% cortical scaring. My GFR got down to 20 and creatinine was over 3. I had an autologous stem cell transplant in November 2012 and I did not have a great response. My ratio started up within 2 months of transplant..
In March 2014 my oncologist told me to keep my blood glucose low and steady as if I were a diabetic. I immediately went very low carb and have never changed that. I have not had a single chip or lick of icing since then. My diet is not high protein; I have only 2 ounces meat at a meal. I have a lot of vegetables and basically follow the book.
I take a few supplements: EGCG (from green tea), curcumin, and some mushroom extracts.
Last week my GFR was up to 49.5 and my creatinine is down to 1.1
Some would argue that the Lord just has decided it is not my time to go yet, but I also think my diet is critical. I challenge people to try low carb and get their blood tested and see if it helps.
Cathy
My ratio is back down in the normal range. I am not taking any myeloma drug. The only prescriptions I take are a sodium bicarb, and Mag 64 from kidney doctor.
Last Thursday, my oncologist told me that I am the second most stable myeloma patient he has. The only one more stable is on Revlimid. I told him that if my ratio had gone up, I was willing to consider Revlimid again (I have been off for over 2 years). He said he would have argued with me that I should not go back on it at this time. I laughed and asked why. He said, "Look at your kidney numbers!"
I have multiple myeloma and light chain deposition disease and the biopsy of my kidney analyzed by Mayo Clinic in May 2012 showed 75% cortical scaring. My GFR got down to 20 and creatinine was over 3. I had an autologous stem cell transplant in November 2012 and I did not have a great response. My ratio started up within 2 months of transplant..
In March 2014 my oncologist told me to keep my blood glucose low and steady as if I were a diabetic. I immediately went very low carb and have never changed that. I have not had a single chip or lick of icing since then. My diet is not high protein; I have only 2 ounces meat at a meal. I have a lot of vegetables and basically follow the book.
I take a few supplements: EGCG (from green tea), curcumin, and some mushroom extracts.
Last week my GFR was up to 49.5 and my creatinine is down to 1.1
Some would argue that the Lord just has decided it is not my time to go yet, but I also think my diet is critical. I challenge people to try low carb and get their blood tested and see if it helps.
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,
Thanks for your update. It's great that you still have your disease under control, and that you're not finding it too difficult to stay on your diet.
In fairness, you should make it clear to people that when your kappa free light chain levels started to increase after your transplant, you quickly went on to Revlimid, and you stayed on Revlimid for more than a year and a half.
More importantly, as the graph TerryH posted in this thread makes clear, it's the Revlimid that really got your free light chain level under control, since you only started your diet when your free light chain levels were practically back to normal and you still were on Revlimid.
Also, given that you were on Revlimid for more than 1.5 years, after a stem cell transplant and initial therapy that did not include Revlimid, it's not an incredible surprise that you have not progressed yet.
Your disease course and treatment is similar to the participants in the IFM Revlimid maintenance clinical trial, in which the median duration of Revlimid maintenance was about 2 years. The patients on maintenance in that study had a median progression-free survival from the time of starting maintenance therapy of 41 months (about 3.5 years):
http://www.nejm.org/doi/full/10.1056/NEJMoa1114138
In a similar U.S. trial of Revlimid maintenance, the median progression-free survival was almost 4 years.
So, yes, you've now gone longer than the median person who had Revlimid in the IFM trial, but what you've experienced is still within what might be expected for someone who was treated with Revlimid as long as you were after your transplant (and, for that matter, after a three-drug induction therapy).
Again, thanks for the update, and may you continue _not_ to progress for a very, very long time!
Thanks for your update. It's great that you still have your disease under control, and that you're not finding it too difficult to stay on your diet.
In fairness, you should make it clear to people that when your kappa free light chain levels started to increase after your transplant, you quickly went on to Revlimid, and you stayed on Revlimid for more than a year and a half.
More importantly, as the graph TerryH posted in this thread makes clear, it's the Revlimid that really got your free light chain level under control, since you only started your diet when your free light chain levels were practically back to normal and you still were on Revlimid.
Also, given that you were on Revlimid for more than 1.5 years, after a stem cell transplant and initial therapy that did not include Revlimid, it's not an incredible surprise that you have not progressed yet.
Your disease course and treatment is similar to the participants in the IFM Revlimid maintenance clinical trial, in which the median duration of Revlimid maintenance was about 2 years. The patients on maintenance in that study had a median progression-free survival from the time of starting maintenance therapy of 41 months (about 3.5 years):
http://www.nejm.org/doi/full/10.1056/NEJMoa1114138
In a similar U.S. trial of Revlimid maintenance, the median progression-free survival was almost 4 years.
So, yes, you've now gone longer than the median person who had Revlimid in the IFM trial, but what you've experienced is still within what might be expected for someone who was treated with Revlimid as long as you were after your transplant (and, for that matter, after a three-drug induction therapy).
Again, thanks for the update, and may you continue _not_ to progress for a very, very long time!
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JimNY
Re: Ketogenic diet and multiple myeloma
Hi Antelope and JimNY,
i think that the studies that JimNY referred to could explain some of the reasons why your progression has been delayed as long as it has, Antelope.
But also you did have kidney problems and so are following a diet recommended for that?
As well as not eating chips or iced cakes, 'low carb' could mean not having alcohol. It sounds like being cautious with your diet has paid off for you. One secondary effect of Revlimid is a slightly increased risk of secondary cancers, as detailed in the paper that Jim posted.
Jim, do you have a reference study showing that a 3-drug induction is better than a 2-drug induction before a stem cell transplant? I am interested in the topic. In Canada, we routinely have had a 2 drug induction, bortezomib (Velcade) plus dex, at least for 'low risk' patients.
i think that the studies that JimNY referred to could explain some of the reasons why your progression has been delayed as long as it has, Antelope.
But also you did have kidney problems and so are following a diet recommended for that?
As well as not eating chips or iced cakes, 'low carb' could mean not having alcohol. It sounds like being cautious with your diet has paid off for you. One secondary effect of Revlimid is a slightly increased risk of secondary cancers, as detailed in the paper that Jim posted.
Jim, do you have a reference study showing that a 3-drug induction is better than a 2-drug induction before a stem cell transplant? I am interested in the topic. In Canada, we routinely have had a 2 drug induction, bortezomib (Velcade) plus dex, at least for 'low risk' patients.
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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
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