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Discussion about multiple myeloma treatments, stem cell transplants, clinical trials, alternative medicines, supplements, and their benefits and side effects.

Re: Ketogenic diet and multiple myeloma

by antelope1225 on Mon Nov 17, 2014 10:43 pm

Thanks, Kim.It was nice to see your post.

I was disappointed at my doctors appointment today - my kappa's went up. They went up to 23.67mg/L (16.21 last month). The lambda's jumped up just as much - they were up to 24.27mg/L (15.58 last month). So, the ratio was OK, but I was disappointed because this is the first time they have gone up. So, this is a chance to see if being more careful with carbs will bring them back down.

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

by Ron S on Tue Nov 18, 2014 1:06 pm

Hi Cathy

Have you made any changes in diet or supplements since last labs?

Ron S

Re: Ketogenic diet and multiple myeloma

by antelope1225 on Tue Nov 18, 2014 6:38 pm

Hi Ron.

I can't think of any supplements I have changed, but I know I got a bit sloppy about carbs when my tree out back had wonderful apples this fall. I would sauté one each day and I knew that was not good for low carb. In thinking back, I was eating too many nuts, peanut butter, spaghetti sauce etc. Those of us with cancer would like to think we are "cured" and we can forget about cancer. This was a reminder that multiple myeloma is part of my life and I need to keep learning to manage it and live with it.

I have 4 things I am going to work on:

  1. I will be more careful of what I eat.
  2. I started walking 30 min per day again - I had quit doing that because I got busy
  3. I am going to be careful to drink enough water - that has more to do with my BUN being up (BUN is very sensitive to dehydration.) I need to have about 64 oz water per day.
  4. I am going to have 1/2 tsp coconut oil in coffee or tea about 3x per day.
I am convinced the normalization of my blood glucose was a huge part of my success and I think the ketones are too (coconut oil is a medium chain triglyceride and seems to raise ketone levels a little bit).

Next appointment isn't until end of December.

Wish me good thoughts this afternoon - I get 6 immunizations in about half an hour because tomorrow is 2 year anniversary since SCT.

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

by Ron S on Tue Nov 18, 2014 8:40 pm

Hi Cathy

Just finished six weeks of gluten free low carb, low moderate protein,and moderate fats. Had lab last week and M spike and kappa light chains were each down about 15-18%. I do know they can vary but they have been going up the last three labs, so I will happily take that for now.

Since igf-1 is a very important growth factor for myeloma cells and is greatly affected by both carbohydrates and protein, and more recent studies show increased cancer risk with high protein, I am trying to keep protein on the lower side.

Ron S

Re: Ketogenic diet and multiple myeloma

by antelope1225 on Wed Nov 19, 2014 10:38 pm

Hi Ron.

Congratulations on your M-spike and kappa free light chains coming down 15-18%!

And, thanks for the tip about keeping the protein intake low. I will watch that.

Dr Bernstein (my go to guy on normalizing blood glucose) says that even the weather can affect people's blood glucose (!). Some diabetics need more insulin in the winter than they do in the summer.

I have also noticed that some things do not affect me immediately but have a sort of delayed reaction. For example, I never eat sugar free candy because even if my blood glucose is OK the day I eat it, it gets high the following day.

Also, I was eating basically exactly the same from mid May through the summer - and my kappa free light chains didn't go down much in June but they went way down in July and more in August. It makes me wonder if the low glucose & insulin lowers the igf-1 and it takes a while to really see the full effect – and the opposite might have happened with eating apples. I told you I had some apples off my tree - with no sugar – but they obviously had too much sugar in them. I had those in September, but I didn't eat them in October. My kappas were up on November 10th even though they didn't go up much in September. Maybe the higher glucose & insulin affected the igf-1 but it took a while to see bad results.

Anyway, great to hear this is working for you, too! I am learning how to do this!

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

by Ron S on Sun Nov 23, 2014 2:41 pm

Cathy,

I forgot to mention that I did drop 15 pounds of ugly endocrine fat in the six weeks before my lab. So maybe getting rid of a lot of those fat cells helped.

I, like many, am always looking for the next super supplement or medication that shows promise in addressing our MGUS, smoldering myeloma, or multiple myeloma. Many of the aforementioned do indeed aid us in our wellness quest. I then questioned what could enhance or inhibit our responses to these supplements/medications. The obvious answer to me was our own body's functioning.

The big players that we can control actually start with our diet. This subject seems to have a strong yea or nay response with most people. Many have said eat what makes you happy and many have said a special type of diet makes them feel better. We live in a food-centric world and this can make it somewhat difficult to ensure a healthy eating lifestyle. If eating what momentarily pleases me also pleases my myeloma cells, then I choose to make those cells very unhappy.

Quickly laying out the problem, it starts with increased insulin response, increased IGF-1, increased fat cells (especially visceral fat). When we have excess fat cells, there is a decrease in the cancer fighting adiponectin, with an increase in fatty acids that serve as nourishment for our myeloma cells.

Bottom line is, the beer / wheat bellies, love handles, whatever you want to name them, are actually acting as an additional endocrine organ in our bodies, doing nothing but negative things. I urge you to google adiponectin myeloma, body fat myeloma, IGF-1 myeloma, and read these studies. It was enough for me to justify a low carbohydrate, moderate protein, moderate fat diet, which will also aid and/or reverse metabolic syndrome, Type 2 diabetes, and generally reduce inflammation.

Ron S

Re: Ketogenic diet and multiple myeloma

by Eric Hofacket on Mon Nov 24, 2014 7:12 pm

Cathy,

If keeping your glucose levels in check prevented the onset of diabetes, as I remember you saying in earlier post, I would count that as a big success and worth all the effort you have made. I would see the glass as half full for you.

Anybody who has read my post knows I do not believe a cancer like myeloma is going to be cured with diet and supplements. I do believe that good diet, not these extreme diets, can work with or against the treatments used for myeloma, and lifestyle changes like removing stress can help as well. Wouldn’t we all like to remove stress from our lives if we could.

I keep finding publications in the last couple of years about how excessive sugar and carbs in our diet seem to be the root cause or have a much deeper influence for a number of health problems than previously were thought to be from high fat diets, especially with heart disease. And these findings are backed up by science and not speculation of some individual doctor’s theories, but often a theory is where these things do start.

To all you who are skeptical of “big medicine”, I have to say when it comes to carbs and fat in the diet, this is appearing to be an area where “big medicine” may have gotten it wrong for the last couple of decades. It is good to see though that big medicine can make shifts and changes in thinking, albeit slowly at times, when the evidence shows it should.

http://www.telegraph.co.uk/science/science-news/11246112/High-fat-diets-not-as-dangerous-as-high-carbohydrate-plans-claim-scientists.html

Eric Hofacket
Name: Eric H
When were you/they diagnosed?: 01 April 2011
Age at diagnosis: 44

Re: Ketogenic diet and multiple myeloma

by antelope1225 on Wed Nov 26, 2014 7:32 pm

Hi Eric. Thanks for the link to the article. It was interesting. Hope you are doing well - I got another kidney infection, darn it.

I will look up those leads, Ron. You were right about being careful of too much protein because it can turn into glucose and I am sure you are right about visceral fat.

I got an email from a friend on this forum who directed me to this interview:

http://articles.mercola.com/sites/articles/archive/2013/06/16/ketogenic-diet-benefits.aspx

I printed out the transcript and read it carefully. It is with "Dr. Thomas Seyfried, who has been teaching neurogenetics and neurochemistry as it relates to cancer treatment at Yale University and Boston College for the past 25 years. He has written over 150 peer-reviewed scientific articles and book chapters, and has also published a book, Cancer as a Metabolic Disease: On the Origin, Management, and Prevention of Cancer.

Here is how he said he got involved in this:

Well, we’ve been doing work research in epilepsy for many decades while I was at Yale and carried it through here in our work at Boston College. It turned out that the ketogenic diet had been used for quite some time for managing seizures in children. We were doing a lot of work on brain cancer in mice and epilepsy in mice. One of my students just thought it would be good to see whether or not ketogenic diets might also be effective against tumors, because they were targeting similar energy pathways"

I will stop there, but I got a lot of ideas on how to fine tune the ketogenic diet! It was fascinating and I am convinced I can probably slow the growth of the multiple myeloma cancer by this.

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

by coachhoke on Fri Nov 28, 2014 12:55 pm

Cathy,

If I remember correctly from my days of biochemistry, proteins cannot turn into glucose.

Coach Hoke

coachhoke
Name: coachhoke
When were you/they diagnosed?: Apri 2012
Age at diagnosis: 71

Re: Ketogenic diet and multiple myeloma

by antelope1225 on Fri Nov 28, 2014 4:22 pm

Hi Coach Hoke. This is from the Seyfried article:

"Of course, the proteins can be metabolized to glucose in the liver as well. So, proteins can be an energy source. But fats spare protein, which is nice. Because if we were to rely on our protein for energy, we will all probably be dead in about a week if we didn’t have any food. Fats spare protein. Protein is essential for body function. The body doesn’t start metabolizing protein for energy unless fat is pretty well depleted ... "

"Gluconeogenesis can actually be generating glucose from other sources of proteins and things like this. Also, when people stop eating there’s stress. It’s overall body stress. Corticoids, our glucocorticoids, can be generating glucose ... to maintain a steady level of glucose. So, there are a lot of factors – hormonal, emotional, and metabolic – that go into these kinds of transitions."

It looks like limiting carbs is by far the most important thing (I am starting to count carbs again). But if you eat too much protein, that can be converted to glucose. My Diabetes Solution book said that, too - but didn't give as many tips on how to limit it.

I am a middle age woman, so I need less protein than a growing child or man - like 0.4 - 0.6 g protein per pound of body weight for adult woman.

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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