Dear Cathy,
Your last posting made us all worry, and you haven't posted anything since then. How are you doing? Hope all is better now!
Lana
Forums
Re: Ketogenic diet and multiple myeloma
Hi Lana.
How nice for you to ask! I sort of assumed everyone thought I was a weirdo for my "complementary medicine," so I have learned to just quietly do what seems to work for me.
Yes, I am doing well - the sea cucumber has helped bring my kappas back down. My ratio of kappas to lambdas is back almost to normal range. Sea cucumber is pricey, about $30 per day, and you need a fairly strong stomach since it is basically raw fish that I swallow chased by water twice a day.
I am not taking any Revlimid or Velcade right now and have not taken any prescription except acyclovir for about a year, though I am willing to take a prescription when my efforts do not control my multiple myeloma. I have only had to take antibiotics one time in the last year since I quit taking Revlimid.
My next appointment is July 15.
Cathy
How nice for you to ask! I sort of assumed everyone thought I was a weirdo for my "complementary medicine," so I have learned to just quietly do what seems to work for me.
Yes, I am doing well - the sea cucumber has helped bring my kappas back down. My ratio of kappas to lambdas is back almost to normal range. Sea cucumber is pricey, about $30 per day, and you need a fairly strong stomach since it is basically raw fish that I swallow chased by water twice a day.
I am not taking any Revlimid or Velcade right now and have not taken any prescription except acyclovir for about a year, though I am willing to take a prescription when my efforts do not control my multiple myeloma. I have only had to take antibiotics one time in the last year since I quit taking Revlimid.
- I follow my ketogenic diet (with 3 T coconut oil and just eat about 4 oz meat per day and less than 30 g carbs) and try to minimize all free glutamate (MSG and others) since the fuel for cancer is glucose and glutamine. I am a good low carb cook after these years. My hubby eats what I make
- I take 6.4 g curcumin with bioperine & 1 T Carlson fish oil per day
- I make a smoothie with anticancer foods every morning (1/2 c of several of the following: frozen brussels sprouts, broccoli, spinach, kale, chard, collards, add 1/4 avocado and fresh veggies like bok choy, wheatgrass, etc, add freshly ground: 1 T flax seed, 1 tsp - chia, black cumin seed, cocoa nibs and a bit of stevia to make it taste better
- I drink several cups of green tea – matcha and gyokuro are especially good
- I take my sea cucumber 2 x per day
- I walk 30 minutes per day to build my mitochondria
- I take a few supplements – nothing in high amounts, but I could tell you what I take if you are interested.
My next appointment is July 15.
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:
Thank you for the update. Your information on diets I think is very valuable. Please do not use the word "weirdo". The only thing unusual, I would say, about your situation is that most normal people have a lot of trouble sticking to a strict diet. You have unusual dedication to yours, to your credit.
Whether it's the diet or not, I hope you stay in remission for a long time. I have learned a lot from your postings and we are incorporating some of it (not all) into our diets. Good luck to you.
Thank you for the update. Your information on diets I think is very valuable. Please do not use the word "weirdo". The only thing unusual, I would say, about your situation is that most normal people have a lot of trouble sticking to a strict diet. You have unusual dedication to yours, to your credit.
Whether it's the diet or not, I hope you stay in remission for a long time. I have learned a lot from your postings and we are incorporating some of it (not all) into our diets. Good luck to you.
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JPC - Name: JPC
Re: Ketogenic diet and multiple myeloma
Thank you, JPC. The reason I characterized my efforts as "weirdo" is to deflect people who want to argue that my diet and efforts have no effect. I am not going to try to convince people. This will also be controversial to say, but I believe the Lord has helped me - to find new studies, to enable me to be content with the limitations of my diet, and to give me peace about the length of my life - whatever it turns out to be.
I did think of one new thing I have added: Arabinoxylan rice bran (MGN-3). I just order it online.
Here are 2 studies on it.
Cholujova, D., et al, "MGN-3 arabinoxylan rice bran modulates innate immunity in multiple myeloma patients," Cancer Immunology, Immunotherapy, Sep 2012 (abstract)
Abstract
Dendritic cells (DCs) and natural killer (NK) cells are central components of innate immunity for controlling tumor growth. The therapeutic effects of certain anti-myeloma drugs are partially mediated by targeting the innate immune response. In addition, novel types of natural compounds have been developed that efficiently modulate the activity of both the cellular and humoral compartments of immunity.
MGN-3 is known as an activator of natural killer cells, inducer of apoptosis and cytokine production, and modulator of dendritic cell maturation and differentiation in vitro.
We have performed a randomized, placebo-controlled study to examine the effects of MGN-3 on innate immune system parameters in 48 multiple myeloma patients. We performed immunophenotypic analysis of peripheral blood samples, determined NK cell activity, and assessed the cytokine profiles of plasma before and during 3 months of treatment.
The results demonstrate a clear increase in NK activity in MGN-3-treated patients compared to the placebo group, an increased level of myeloid DCs in peripheral blood, and augmented concentrations of T helper cell type 1-related cytokines. The present study suggests that MGN-3 may represent an immunologically relevant product for activating innate immunity in multiple myeloma patients and warrants further testing to demonstrate clinical efficacy.
Bang, MH, et al, "Arabinoxylan rice bran (MGN-3) enhances the effects of interventional therapies for the treatment of hepatocellular carcinoma: a three-year randomized clinical trial", Anticancer Research, Dec 2010 (full text of article)
Abstract
Background And Aims: This study examined the efficacy of arabinoxylan rice bran (MGN-3) in conjunction with an interventional therapy (IT) for the treatment of hepatocellular carcinoma patients.
Patients And Methods: A total of sixty-eight patients with hepatocellular carcinoma (stages I and II) participated in the study. Patients were randomized to receive IT (30 patients, control group) or IT+MGN-3 (38 patients), and randomly divided into two groups using a computer-generated randomization list. Patients and investigators were blinded. IT included transarterial oily chemoembolization (TOCE) or a combination of TOCE and percutaneous ethanol injection treatment (PEIT).
Results: Patients in the IT+MGN-3 group showed:
Have a good day
I did think of one new thing I have added: Arabinoxylan rice bran (MGN-3). I just order it online.
Here are 2 studies on it.
Cholujova, D., et al, "MGN-3 arabinoxylan rice bran modulates innate immunity in multiple myeloma patients," Cancer Immunology, Immunotherapy, Sep 2012 (abstract)
Abstract
Dendritic cells (DCs) and natural killer (NK) cells are central components of innate immunity for controlling tumor growth. The therapeutic effects of certain anti-myeloma drugs are partially mediated by targeting the innate immune response. In addition, novel types of natural compounds have been developed that efficiently modulate the activity of both the cellular and humoral compartments of immunity.
MGN-3 is known as an activator of natural killer cells, inducer of apoptosis and cytokine production, and modulator of dendritic cell maturation and differentiation in vitro.
We have performed a randomized, placebo-controlled study to examine the effects of MGN-3 on innate immune system parameters in 48 multiple myeloma patients. We performed immunophenotypic analysis of peripheral blood samples, determined NK cell activity, and assessed the cytokine profiles of plasma before and during 3 months of treatment.
The results demonstrate a clear increase in NK activity in MGN-3-treated patients compared to the placebo group, an increased level of myeloid DCs in peripheral blood, and augmented concentrations of T helper cell type 1-related cytokines. The present study suggests that MGN-3 may represent an immunologically relevant product for activating innate immunity in multiple myeloma patients and warrants further testing to demonstrate clinical efficacy.
Bang, MH, et al, "Arabinoxylan rice bran (MGN-3) enhances the effects of interventional therapies for the treatment of hepatocellular carcinoma: a three-year randomized clinical trial", Anticancer Research, Dec 2010 (full text of article)
Abstract
Background And Aims: This study examined the efficacy of arabinoxylan rice bran (MGN-3) in conjunction with an interventional therapy (IT) for the treatment of hepatocellular carcinoma patients.
Patients And Methods: A total of sixty-eight patients with hepatocellular carcinoma (stages I and II) participated in the study. Patients were randomized to receive IT (30 patients, control group) or IT+MGN-3 (38 patients), and randomly divided into two groups using a computer-generated randomization list. Patients and investigators were blinded. IT included transarterial oily chemoembolization (TOCE) or a combination of TOCE and percutaneous ethanol injection treatment (PEIT).
Results: Patients in the IT+MGN-3 group showed:
- Lower recurrence of the disease, 31.6% (12/38), as compared to 46.7% (14/30) for the control;
- Higher survival after the second year, 35%, as compared to 6.7% for the control;
- Significantly lower alpha-fetoprotein level, a 38% decrease (p = 0.0001), as compared to baseline value, while the control showed no significant change; and
- A significant decrease in tumor volume, in contrast to the control, which showed no significant change. When the results were analyzed according to each IT modality, MGN-3+IT sub-groups displayed a greater response to treatment, in every aspect examined, than the IT sub-groups alone. However, the patients in the MGN-3+TOCE+PEIT sub-group demonstrated greater reduction in AFP levels and longer survival time than the MGN-3+TOCE sub-group.
Have a good day
-
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!
Can't even express how happy I am to hear that you are back on track!
Everything you do is helping a lot, I don't have any doubts. I also read not a long time ago about healing powers of baking soda, which makes sense since it helps with pH balance, but apparently also has healing powers for kidneys.
Keep up with your postings. I check out how you are doing from time to time and, honestly, it makes my day to hear from you another good news!
Can't even express how happy I am to hear that you are back on track!
Everything you do is helping a lot, I don't have any doubts. I also read not a long time ago about healing powers of baking soda, which makes sense since it helps with pH balance, but apparently also has healing powers for kidneys.
Keep up with your postings. I check out how you are doing from time to time and, honestly, it makes my day to hear from you another good news!
-
Lana
Re: Ketogenic diet and multiple myeloma
Hey Cathy,
You may want to look at Terry Golombick's recent research (which was mentioned in the Beacon's Myeloma Morning a few weeks back). I've always liked the research projects that Terry has taken on.
Golombick, T. et al., “Addition of rice bran arabinoxylan to curcumin therapy may be of benefit to patients with early-stage b-cell lymphoid malignancies (monoclonal gammopathy of undetermined significance, smoldering multiple myeloma, or stage 0/1 chronic lymphocytic leukemia): a preliminary clinical study” in Integrative Cancer Therapies, May 6, 2016 (full text)
Abstract:
Hypothesis: Prior studies on patients with early B-cell lymphoid malignancies suggest that early intervention with curcumin may lead to delay in progressive disease and prolonged survival. These patients are characterized by increased susceptibility to infections. Rice bran arabinoxylan (Ribraxx) has been shown to have immunostimulatory, anti-inflammatory, and proapoptotic effects. We postulated that addition of Ribraxx to curcumin therapy may be of benefit.
Study design: Monoclonal gammopathy of undetermined significance (MGUS) / smoldering multiple myeloma (SMM) or stage 0/1 chronic lymphocytic leukemia (CLL) patients who had been on oral curcumin therapy for a period of 6 months or more were administered both curcumin (as Curcuforte) and Ribraxx.
Methods: Ten MGUS/SMM patients and 10 patients with stage 0/1 CLL were administered 6 g of curcumin and 2 g Ribraxx daily. Blood samples were collected at baseline and at 2-month intervals for a period of 6 months, and various markers were monitored. MGUS/SMM patients included full blood count (FBC); paraprotein; free light chains/ratio; C-reactive protein (CRP) and erythrocyte sedimentation rate (ESR); B2 microglobulin and immunological markers. Markers monitored for stage 0/1 CLL were FBC, CRP and ESR, and immunological markers.
Results: Of 10 MGUS/SMM patients,5 (50%) were neutropenic at baseline, and the Curcuforte / Ribraxx combination therapy showed an increased neutrophil count, varying between 10% and 90% among 8 of the 10 (80%) MGUS/SMM patients. An additional benefit of the combination therapy was the potent effect in reducing the raised ESR in 4 (44%) of the MGUS/SMM patients.
Conclusion: Addition of Ribraxx to curcumin therapy may be of benefit to patients with early-stage B-cell lymphoid malignancies.
You may want to look at Terry Golombick's recent research (which was mentioned in the Beacon's Myeloma Morning a few weeks back). I've always liked the research projects that Terry has taken on.
Golombick, T. et al., “Addition of rice bran arabinoxylan to curcumin therapy may be of benefit to patients with early-stage b-cell lymphoid malignancies (monoclonal gammopathy of undetermined significance, smoldering multiple myeloma, or stage 0/1 chronic lymphocytic leukemia): a preliminary clinical study” in Integrative Cancer Therapies, May 6, 2016 (full text)
Abstract:
Hypothesis: Prior studies on patients with early B-cell lymphoid malignancies suggest that early intervention with curcumin may lead to delay in progressive disease and prolonged survival. These patients are characterized by increased susceptibility to infections. Rice bran arabinoxylan (Ribraxx) has been shown to have immunostimulatory, anti-inflammatory, and proapoptotic effects. We postulated that addition of Ribraxx to curcumin therapy may be of benefit.
Study design: Monoclonal gammopathy of undetermined significance (MGUS) / smoldering multiple myeloma (SMM) or stage 0/1 chronic lymphocytic leukemia (CLL) patients who had been on oral curcumin therapy for a period of 6 months or more were administered both curcumin (as Curcuforte) and Ribraxx.
Methods: Ten MGUS/SMM patients and 10 patients with stage 0/1 CLL were administered 6 g of curcumin and 2 g Ribraxx daily. Blood samples were collected at baseline and at 2-month intervals for a period of 6 months, and various markers were monitored. MGUS/SMM patients included full blood count (FBC); paraprotein; free light chains/ratio; C-reactive protein (CRP) and erythrocyte sedimentation rate (ESR); B2 microglobulin and immunological markers. Markers monitored for stage 0/1 CLL were FBC, CRP and ESR, and immunological markers.
Results: Of 10 MGUS/SMM patients,5 (50%) were neutropenic at baseline, and the Curcuforte / Ribraxx combination therapy showed an increased neutrophil count, varying between 10% and 90% among 8 of the 10 (80%) MGUS/SMM patients. An additional benefit of the combination therapy was the potent effect in reducing the raised ESR in 4 (44%) of the MGUS/SMM patients.
Conclusion: Addition of Ribraxx to curcumin therapy may be of benefit to patients with early-stage B-cell lymphoid malignancies.
-
Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Ketogenic diet and multiple myeloma
You are so encouraging, Lana .
You know, my nephrologist put me on 650 mg of sodium bicarbonate (which is 1/8 tsp of baking soda) when I was first diagnosed and I still take it every day.
Fais, S, et al, "Microenvironmental acidosis in carcinogenesis and metastases: new strategies in prevention and therapy," Cancer and Metastasis Reviews, December 2014 (full text of article)
Cathy
.You know, my nephrologist put me on 650 mg of sodium bicarbonate (which is 1/8 tsp of baking soda) when I was first diagnosed and I still take it every day.
Fais, S, et al, "Microenvironmental acidosis in carcinogenesis and metastases: new strategies in prevention and therapy," Cancer and Metastasis Reviews, December 2014 (full text of article)
- Cancer cells are characterized by both an acidic extracellular pH (pHe) and a normal or alkaline cytoplasmic pH (pHi)
- Cancer cells may use acid as a form of niche engineering in which they actively build an environment that is favorable for their own growth and survival but toxic to competitors and potential predators (such as the immune system)
- Increased acid production is a consequence of increased anaerobic glucose metabolism in tumors.
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
Thanks, Mulitbilly.
I saw that article, too. I need to go to some of your recent posts and see what else is new on the forum
Cathy
I saw that article, too. I need to go to some of your recent posts and see what else is new on the forum
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,
Great news! Thanks for sharing again. May I get the brand name and dose of the MGN-3 you are taking? I have been researching it and it looks promising for both of my issues (multiple sclerosis and multiple myeloma).
Do you take a break from it occasionally or take continuously? Thanks!
Best! BN
Great news! Thanks for sharing again. May I get the brand name and dose of the MGN-3 you are taking? I have been researching it and it looks promising for both of my issues (multiple sclerosis and multiple myeloma).
Do you take a break from it occasionally or take continuously? Thanks!
Best! BN
-
Bar-none - Who do you know with myeloma?: Me
- When were you/they diagnosed?: 3/14
Re: Ketogenic diet and multiple myeloma
Hi Bar - none.
I have been taking (2) 500 mg tablets per day. It is called MGN-3 500 mg double strength Arabinoxylan ($150) and is by Daiwa. Interestingly, there was another product BRM4 ($95) also by Daiwa Pharmaceutical, and it was less expensive, though it seems to have exactly the same contents. I bought both online and take one of each every evening..
I found the best study on ketogenic diet! Read the 2nd half (review of 5 previous reports) and look at the charts, too.
Some of the helpful points were:
1. The use of ketocal and MCT oil to keep ketones up.
2. Many patients could not keep their glucose below 80 (I have never been able to)
3. Taking dex raises your blood glucose - which is the opposite of a ketogenic diet.
High glucose levels linked to dementia. Ketocal was developed a number of years ago.
Reference:
Schwartz, K., et al, "Treatment of glioma patients with ketogenic diets: report of two cases treated with an IRB-approved energy-restricted ketogenic diet protocol and review of the literature," Cancer & Metabolism, March 2015 (full text of article)
Review of five previously published patient reports
"Five patients with advanced brain tumors and favorable responses to ERKD have been reported (patients no. 3 to 7) (Table 1). The best response was a 3-year-old girl who remained in complete remission 5 years after treatment with a ERKD [16]. In four of the five patients, ERKD was combined with one of the standard modalities of treatment, either radiation or chemotherapy. The most recent report showed that three of the five patients were in complete remission and two of the five had documented disease progression after stopping the ERKD ..."
"The metabolic changes associated with ERKD (energy restricted Ketogenic Diet) and the different approaches to implementing an ERKD for each patient are summarized in Table 3. Body mass index, reported in six patients, did not decrease more than 20%. Patient 5 was treated part of the time with 600 Kcal/day, and her BMI decreased from 25 to 20 (20%). Initially, patient no. 1 was treated with Ketocal® which maintained his glucose and ketones within the desired range. Because of the poor palatability of the Ketocal®, he elected to be changed to an ERKD using ketogenic food pattern. This change in type of ketogenic diet modality resulted in his blood glucose increasing above the target range for our study while his serum ketones remained above 2 multiple myeloma. Patients 3, 4, and 5 used medium chain triglycerides (MCT; as MCT oil) as a source of fat and patient no. 6 was initially started on a classical Atkins Diet and changed to an ERKD with a ratio of 3.5:1 grams of fat to combined grams of protein and carbohydrates. Most of the patients were able to keep their serum ketone levels above 2 or 3 multiple myeloma. However, a target serum glucose ranging between 50 and 70 mg/dl was not always achieved and did not appear to be absolutely required in patients 3, 4, and 5 who achieved long-term disease free survival ..."
"The duration of response of the five previously published patients ranged from 4 months to more than five years (Table 4). Four patients were simultaneously treated with another treatment modality such as radiation therapy and/or chemotherapy in addition to treatment with the ERKD."
The most troubling finding in this report was that it appears some cancers CAN metabolize ketones.
Cathy
I have been taking (2) 500 mg tablets per day. It is called MGN-3 500 mg double strength Arabinoxylan ($150) and is by Daiwa. Interestingly, there was another product BRM4 ($95) also by Daiwa Pharmaceutical, and it was less expensive, though it seems to have exactly the same contents. I bought both online and take one of each every evening..
I found the best study on ketogenic diet! Read the 2nd half (review of 5 previous reports) and look at the charts, too.
Some of the helpful points were:
1. The use of ketocal and MCT oil to keep ketones up.
2. Many patients could not keep their glucose below 80 (I have never been able to)
3. Taking dex raises your blood glucose - which is the opposite of a ketogenic diet.
High glucose levels linked to dementia. Ketocal was developed a number of years ago.
Reference:
Schwartz, K., et al, "Treatment of glioma patients with ketogenic diets: report of two cases treated with an IRB-approved energy-restricted ketogenic diet protocol and review of the literature," Cancer & Metabolism, March 2015 (full text of article)
Review of five previously published patient reports
"Five patients with advanced brain tumors and favorable responses to ERKD have been reported (patients no. 3 to 7) (Table 1). The best response was a 3-year-old girl who remained in complete remission 5 years after treatment with a ERKD [16]. In four of the five patients, ERKD was combined with one of the standard modalities of treatment, either radiation or chemotherapy. The most recent report showed that three of the five patients were in complete remission and two of the five had documented disease progression after stopping the ERKD ..."
"The metabolic changes associated with ERKD (energy restricted Ketogenic Diet) and the different approaches to implementing an ERKD for each patient are summarized in Table 3. Body mass index, reported in six patients, did not decrease more than 20%. Patient 5 was treated part of the time with 600 Kcal/day, and her BMI decreased from 25 to 20 (20%). Initially, patient no. 1 was treated with Ketocal® which maintained his glucose and ketones within the desired range. Because of the poor palatability of the Ketocal®, he elected to be changed to an ERKD using ketogenic food pattern. This change in type of ketogenic diet modality resulted in his blood glucose increasing above the target range for our study while his serum ketones remained above 2 multiple myeloma. Patients 3, 4, and 5 used medium chain triglycerides (MCT; as MCT oil) as a source of fat and patient no. 6 was initially started on a classical Atkins Diet and changed to an ERKD with a ratio of 3.5:1 grams of fat to combined grams of protein and carbohydrates. Most of the patients were able to keep their serum ketone levels above 2 or 3 multiple myeloma. However, a target serum glucose ranging between 50 and 70 mg/dl was not always achieved and did not appear to be absolutely required in patients 3, 4, and 5 who achieved long-term disease free survival ..."
"The duration of response of the five previously published patients ranged from 4 months to more than five years (Table 4). Four patients were simultaneously treated with another treatment modality such as radiation therapy and/or chemotherapy in addition to treatment with the ERKD."
The most troubling finding in this report was that it appears some cancers CAN metabolize ketones.
Cathy
-
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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