Hi Jack.
Philosophers say to live each day as if it is your last. That is much easier for me now that I have cancer. I am very aware of my cancer and that I might have just a few more years. The one benefit of worry is if it motivates you to make the effort to change things.
I wrote the above posts more than a year ago. I have continued to eat a very low carb diet. In fact, I strive to keep my blood ketones above 3 and my glucose below 84 and I measure it every morning and every evening with a ketone meter and blood meter. Here are some of the benefits:
1. My neuropathy went away after a month or two!
2. My cancer markers are lower than they were a year ago, and they are stable
3. My kidney function, which had been as low as 20%, is up to 46%.
I don't just go for any old "fad". I have a degree in biology – and I loved biochemistry – so I read the latest research on "pub Med". I was a bit rusty when I started reading the research (35 years since I graduated college) but, like figuring out a puzzle, you start to understand more about angiogenesis and the role of insulin, glucose, IGF-1.
Anyway, it is empowering to me. I know everyone will die and I might have just a few years, but I am willing to make the effort to try.
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: Multiple myeloma diet?
Oh one other thing is that I have been able to lower how much Revlimid I take from every other day to once a week! That means my WBC and RBC are better and I am not as tired or prone to infections.
Cathy
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: Multiple myeloma diet?
I believe I've had smoldering myeloma since fall of 2014. Actually confirmed with a bone biopsy and aspiration in April. I developed palm and some body psoriasis following spinal fusion July of 2013. Psoriasis sites often recommend gluten free diet. I have been gluten free for about a year. Interestingly, this was the first winter, Ohio, that I had no sinus infections or colds. I rarely get the flu. My blood levels other than the myeloma markers are good.
I appreciate the above information and though I eat very little gluten free grain carbs, I will try to decrease those. I am also using turmeric in my cooking and will start taking a curcumin tablet when they arrive in the mail. I am soon to be 77 years old and was very healthy until 2013, when I needed spine surgery and just had hip replacement last November. I am already having problems with my back and right hip. I believe my bone deterioration is from MGUS. My X-ray showed diffuse bones and my MRI showed diffuse bone marrow.
I will go on any diet or take proven supplements if I can prolong bone deterioration. I am concerned with quality of life and not longevity.
Lets continue to share and be open minded about anything that works out there. There is still too much unknown in our disease.
Thank you all for all the info you have shared.
I appreciate the above information and though I eat very little gluten free grain carbs, I will try to decrease those. I am also using turmeric in my cooking and will start taking a curcumin tablet when they arrive in the mail. I am soon to be 77 years old and was very healthy until 2013, when I needed spine surgery and just had hip replacement last November. I am already having problems with my back and right hip. I believe my bone deterioration is from MGUS. My X-ray showed diffuse bones and my MRI showed diffuse bone marrow.
I will go on any diet or take proven supplements if I can prolong bone deterioration. I am concerned with quality of life and not longevity.
Lets continue to share and be open minded about anything that works out there. There is still too much unknown in our disease.
Thank you all for all the info you have shared.
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smarty - Name: Marti
- Who do you know with myeloma?: myself Smoldering Myeloma
- When were you/they diagnosed?: May 1, 2015
- Age at diagnosis: 76
Re: Multiple myeloma diet?
Good for you, Smarty!
I found an exciting new article from a study just this year - published in March 2015; see the full reference below.
The above article has the formula to calculate a Glucose Ketone Index which is a ratio of blood glucose to ketones. The article is about how the Glucose Ketone Index (GKI) was used to analyze results from 5 previously published reports on how effective the ketogenic diet is in suppressing cancer.
It seems at this time that a GKI of 1 is optimal. Blood and ketones should be measured 2-3 hours after last meal, and number should be taken twice a day.
Anyway, a normal diet is around 25-35 and I have been pretty good. I have kept mine around 3 since I started counting everything in December, but I want to get my GKI down to 1, so I am looking over my eating habits and making some small adjustments. Pretty exciting study, though!
I will tell you how to figure your GKI if interested
Cathy
Reference:
"The glucose ketone index calculator: a simple tool to monitor therapeutic efficacy for metabolic management of brain cancer," Nutrition & Metabolism, March 2015 (full text of article)
I found an exciting new article from a study just this year - published in March 2015; see the full reference below.
The above article has the formula to calculate a Glucose Ketone Index which is a ratio of blood glucose to ketones. The article is about how the Glucose Ketone Index (GKI) was used to analyze results from 5 previously published reports on how effective the ketogenic diet is in suppressing cancer.
- The first study involved 2 children with brain cancer. During 8 weeks on ketogenic diet, their GKI dropped from 27.5 to .7 in one patient and 1.1 in the other patient. The children maintained that for the entire 8 weeks and had no chemotherapy. Both patients went into remission – and remained in remission up until the time of publication – which was 4 years for one and 5 years for the other even after they returned to a standard diet!
- The second study involved a 65 year old woman with brain cancer. Her GKI went from 37.5 to 1.4 (it took 3 weeks to get there). She maintained that for 8 weeks and had no discernible brain tumor tissue at the end of 8 weeks. But she went off the diet and 10 weeks after she went off the diet her tumor came back.
- 3rd study was on mice- if mice had GKI of 15.2 there was rapid growth of tumor. If GKI was 3.7 the tumor decreased in size
- 4th study was on mice. Mice with GKI of 9.6-70 there was rapid growth of tumor. Mice with GKI of 1.8-4.4 had reduction in size of growth.
- 5th – mice with GKI of 32.3 survived 41 days. Mice with GKI of 5.7 plus they received radiation survived more than 200 days.
It seems at this time that a GKI of 1 is optimal. Blood and ketones should be measured 2-3 hours after last meal, and number should be taken twice a day.
Anyway, a normal diet is around 25-35 and I have been pretty good. I have kept mine around 3 since I started counting everything in December, but I want to get my GKI down to 1, so I am looking over my eating habits and making some small adjustments. Pretty exciting study, though!
I will tell you how to figure your GKI if interested
Cathy
Reference:
"The glucose ketone index calculator: a simple tool to monitor therapeutic efficacy for metabolic management of brain cancer," Nutrition & Metabolism, March 2015 (full text of article)
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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: Multiple myeloma diet?
Hi Cathy. Yes I am interested in the GKI diet you write about.
I have researched some on Blood journal. Have you read Dr Purlmetter's book on Grain Brain? He promotes an extreme diet eliminating all grains, and most rice and potatoes, for general health. I thought this to be not applicable to the average person but perhaps ok for someone with cancer.
Please tell me how to calculate and what foods to avoid. I look forward to hearing from you. Marti
I have researched some on Blood journal. Have you read Dr Purlmetter's book on Grain Brain? He promotes an extreme diet eliminating all grains, and most rice and potatoes, for general health. I thought this to be not applicable to the average person but perhaps ok for someone with cancer.
Please tell me how to calculate and what foods to avoid. I look forward to hearing from you. Marti
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smarty - Name: Marti
- Who do you know with myeloma?: myself Smoldering Myeloma
- When were you/they diagnosed?: May 1, 2015
- Age at diagnosis: 76
Re: Multiple myeloma diet?
Hi Marti.
OK, you go to Walgreens or Walmart and buy a glucose meter with glucose test strips and a lancet. I also ordered a ketone meter from Amazon - it is a Precision by Abbott.
In the evening, about 2-3 hours after I finish dinner, I poke my finger with the lancet (hurts less on sides of fingers) and touch the blood to the ketone test strip that is in the ketone meter and wait for the meter to tell the ketones. With that same blood, I do a quick blood glucose test by touching the same blood to the glucose test strip in the glucose test meter. Then I write down those 2 numbers on my calendar.
The glucose meter measures in mg/dl and the ketone meter measures in mmol, so you need to change the glucose to mmol. All you do is divide the glucose number by 18.
So, if glucose reading is 84, you divide that by 18 and get 4.66.
And if the ketone reading is 3.3, you write a ratio of glucose (4.66) above the ketone reading 3.3,
4.66/3.3
You divide the top number by the bottom number with your handy calculator and come up with a GKI of 1.4 - which is pretty good.
Everyone has to decide what they can live with. But remember that people with diabetes generally have to eat very low carb and they test their blood 5 or more times a day with glucose meter. If people with diabetes can do it, I can do it
. Blood ketone strips are almost $5 each, so I just test ketones once a day, but I usually test glucose in morning too. (Glucose strips are $1 each.)
Cathy
OK, you go to Walgreens or Walmart and buy a glucose meter with glucose test strips and a lancet. I also ordered a ketone meter from Amazon - it is a Precision by Abbott.
In the evening, about 2-3 hours after I finish dinner, I poke my finger with the lancet (hurts less on sides of fingers) and touch the blood to the ketone test strip that is in the ketone meter and wait for the meter to tell the ketones. With that same blood, I do a quick blood glucose test by touching the same blood to the glucose test strip in the glucose test meter. Then I write down those 2 numbers on my calendar.
The glucose meter measures in mg/dl and the ketone meter measures in mmol, so you need to change the glucose to mmol. All you do is divide the glucose number by 18.
So, if glucose reading is 84, you divide that by 18 and get 4.66.
And if the ketone reading is 3.3, you write a ratio of glucose (4.66) above the ketone reading 3.3,
4.66/3.3
You divide the top number by the bottom number with your handy calculator and come up with a GKI of 1.4 - which is pretty good.
Everyone has to decide what they can live with. But remember that people with diabetes generally have to eat very low carb and they test their blood 5 or more times a day with glucose meter. If people with diabetes can do it, I can do it
. Blood ketone strips are almost $5 each, so I just test ketones once a day, but I usually test glucose in morning too. (Glucose strips are $1 each.)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: Multiple myeloma diet?
Hi Cathy, thank you for all the information. For the present I will save this information, continue to research and stay on my gluten free diet. As I mentioned I will lower my carb consumption. I can do this easily by greatly limiting rice and potatoes.
I see my doctor July 20th for more blood work at which time I will have a good idea whether there is any progression. It would be wonderful if my efforts so far have had a positive effect on my markers but, if not, I will approach diet more aggressively.
I will keep to touch. Marti
I see my doctor July 20th for more blood work at which time I will have a good idea whether there is any progression. It would be wonderful if my efforts so far have had a positive effect on my markers but, if not, I will approach diet more aggressively.
I will keep to touch. Marti
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smarty - Name: Marti
- Who do you know with myeloma?: myself Smoldering Myeloma
- When were you/they diagnosed?: May 1, 2015
- Age at diagnosis: 76
Re: Multiple myeloma diet?
Glad to send it Marti.
We all have to do a "cost/benefit" analysis for ourselves - are the results worth the effort? For me the answer is yes. I would not be carefully doing this diet if I had not had a close encounter with my mortality. I had enough indicators that gave me 12 months or 27 months to live that I decided if I extended my life 6 months or a year with this, it would be worth it.
But, having done it for over a year, I will probably continue it for the rest of my life.
This one is COOL
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4165433/
Tumor cells secrete cytokines/factors which induce muscle and fat degradation in cancer patients – “cancer cachexia”. 20% of all cancer deaths result from this.
Ketogenic diet diminished tumor growth & cachexia.
Ketone bodies inhibit growth and induce apoptosis in pancreatic cell lines
Ketone bodies diminish health of cancer cells by reducing glucose and glutamine uptake.
Also cancer cells exposed to ketone bodies had fewer GLUT1
The thing that struck me from the article was that ketones actually caused less glucose and glutamine uptake by cancer cells- ketones actually prevent cancer cells from being able to use them? Wow. Maybe this is related, but the fact that in the presence of ketones, the cancer cells were not able to break down healthy muscle tissue also amazed me.
When I was reading Cancer As a Metabolic Disease, the scary part was that you could cut back on glucose, but if the cancer metastasized it would just digest healthy tissue to support itself. So, cutting back on glucose might not even work – but this article is the first time I have ever seen that the ketones seem to interfere with the ability of the cancer cells to basically eat healthy tissue.
We all have to do a "cost/benefit" analysis for ourselves - are the results worth the effort? For me the answer is yes. I would not be carefully doing this diet if I had not had a close encounter with my mortality. I had enough indicators that gave me 12 months or 27 months to live that I decided if I extended my life 6 months or a year with this, it would be worth it.
But, having done it for over a year, I will probably continue it for the rest of my life.
This one is COOL
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4165433/
Tumor cells secrete cytokines/factors which induce muscle and fat degradation in cancer patients – “cancer cachexia”. 20% of all cancer deaths result from this.
Ketogenic diet diminished tumor growth & cachexia.
Ketone bodies inhibit growth and induce apoptosis in pancreatic cell lines
Ketone bodies diminish health of cancer cells by reducing glucose and glutamine uptake.
Also cancer cells exposed to ketone bodies had fewer GLUT1
The thing that struck me from the article was that ketones actually caused less glucose and glutamine uptake by cancer cells- ketones actually prevent cancer cells from being able to use them? Wow. Maybe this is related, but the fact that in the presence of ketones, the cancer cells were not able to break down healthy muscle tissue also amazed me.
When I was reading Cancer As a Metabolic Disease, the scary part was that you could cut back on glucose, but if the cancer metastasized it would just digest healthy tissue to support itself. So, cutting back on glucose might not even work – but this article is the first time I have ever seen that the ketones seem to interfere with the ability of the cancer cells to basically eat healthy tissue.
-
antelope1225 - Name: Cathy1225
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: May 25 2012
- Age at diagnosis: 55
28 posts
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