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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 Fri Aug 14, 2015 2:53 pm

Thank you, Stephen!

I appreciate your encouraging words. .

A practical tip is to try to encourage your mother to have coconut oil with every meal - I generally have 4 T per day. It is easiest for me to take it in coffee, tea, my own version of hot cocoa etc. Coconut oil is basically a ketone supplement - it has medium chain triglycerides.

Here are a few interesting studies I have read recently

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4235292/ full article
Ketone supplementation decreases tumor cell viability and prolongs survival of mice with metastatic cancer
Cancer cells express an abnormal metabolism characterized by increased glucose consumption owing to genetic mutations and mitochondrial dysfunction. Previous studies indicate that unlike healthy tissues, cancer cells are unable to effectively use ketone bodies for energy. Furthermore, ketones inhibit the proliferation and viability of cultured tumor cells. As the Warburg effect is especially prominent in metastatic cells, we hypothesized that dietary ketone supplementation would inhibit metastatic cancer progression in vivo. Proliferation and viability were measured in the highly metastatic VM-M3 cells cultured in the presence and absence of β-hydroxybutyrate (βHB).

The ketogenic diet has been shown to enhance the efficacy of both radiation and chemotherapy in vivo

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4464523/ (full article)
We previously showed that two non-toxic metabolic therapies – the ketogenic diet with concurrent hyperbaric oxygen (KD+HBOT) and dietary ketone supplementation – could increase survival time in the VM-M3 mouse model of metastatic cancer. We hypothesized that combining these therapies could provide an even greater therapeutic benefit in this model. Mice receiving the combination therapy demonstrated a marked reduction in tumor growth rate and metastatic spread, and lived twice as long as control animals.

I hope your Mother finds that the ketogenic diet helps her win her battle with multiple myeloma. I would be happy to give any tips that I have learned over the last 28 months :-)

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

by antelope1225 on Fri Aug 14, 2015 3:08 pm

Hi Terry H.

I would still interpret my results differently than you have, but I value your opinion, as always.

Perhaps my results would have been the same without the ketogenic diet but this is not an "academic question" for me. My life depends on my decisions. Different people want to "battle cancer" by different methods, but I have chosen what I will do to battle my cancer. And it is still my humble opinion that the ketogenic diet is helping me and does not cause the collateral damage that most chemo causes.

So, I will continue it and a few other interesting ideas.

Stephen, thank you for the information on Vitamin K. I will follow your link in a minute. I am not a vegetarian and I do eat "grass fed" beef as well as elk (I live in the Rocky Mountains and we hunt- so that is some healthy grass fed meat). I also take Vitamin K2 supplements. I have not tried Natto and actually have never heard of it.

Your name indicates your interest in diet. I am currently following something to prevent Urinary Tract Infections. I am taking 1/2 tsp of horseradish every day. I had 6 or 7 UTI's in the last year and if taking horseradish reduces that to half or less, I will be thrilled - because every time I have a UTI, I have to take antibiotics

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

by antelope1225 on Fri Aug 14, 2015 3:47 pm

This next study is COOL The thing that struck me from the article was that ketones actually cause the cancer cells to have less glucose and glutamine uptake! I knew we were trying to keep glucose levels down and trying not to eat too much meat (glutamine) but 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.


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
and 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

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 mrozdav on Fri Aug 14, 2015 4:45 pm

Cathy, This may be terribly presumptuous of me to say, but I will anyway. Do not give natto a second thought. It is, in fact, full of healthful nutrients, and many Japanese, probably most, love it. However, I have never met an American (or any Westerner, for that matter) who could tolerate its taste and/or texture. It is definitely a taste that needs to be acquired from early childhood. Otherwise, in my opinion, it is hopeless. If there are any Japanese participants in this forum, I hope they will write in and explain from their own experience about this special food. I write this as a person who likes to think that she is adventurous when it comes to international cuisine. I draw the line at natto.

I have found your postings interesting. I think you should keep on doing anything that makes you feel well and that works for you. The second you have any doubts, you can always return to conventional treatment. Best of luck. The one thing I have learned so far is that none of our doctors really knows for sure what will work for a given patient. They are just filled with high hopes in each individual case.

mrozdav

Re: Ketogenic diet and multiple myeloma

by Dietengineer on Fri Aug 14, 2015 8:13 pm

Thanks for the advice. My mom is using MCT (medium chain triglycerides) oil in coffee. I am a coconut oil user myself, but she dislikes the taste. She has been doing a low-carb, high-fat (LCHF) diet for about a year, but has not decided to go into ketosis until now since she left remission and is not improving.

I am in my senior year for electrical engineering and have been self teaching nutrition and cellular biology to apply for a masters program. As I learn the materials, I am documenting its relationship to ketosis.

When I get to multiple myeloma, I will look over these studies, but I am currently in the middle of some research that I'm doing involving the liver and ketosis, which I need to focus on to apply for my masters. I will also consider any possible causes of UTI when I go through the urinary tract system.

My mom would love some advice while she is keto adapting and is going to join this discussion in my place.

It is good to hear that you are eating healthy animals because most Americans are eating the sick animals and don't realize it. Fish is a very healthy animal product and encourage it to be in the diet with the proper meats.

Although upgrading from conventional animal protein to soy is shown to be beneficial, if you are choosing 100% grass fed beef, pastured chicken, or eggs, without soy in the diet, pastured pork fed vegetable silage, and 100% grass fed ghee. Yes, the price goes up, but if you can afford and / or find these high quality animal products so does the vitamin content. I don't know of any studies comparing soy to healthy animals.

I hope this helps and I will continue reading,
Stephen

Dietengineer
Name: Dietengineer
Who do you know with myeloma?: Mother
When were you/they diagnosed?: 2011
Age at diagnosis: 59

Re: Ketogenic diet and multiple myeloma

by judyf on Sat Aug 15, 2015 8:53 pm

Hi Cathy,

My name is Judy and I am Stephen's mom. I was diagnosed with multiple myeloma December 2011 after several months of increasingly uncomfortable back and leg pain that turned out to be an L5 compression fracture. My lambda light chains were at 1450.

After a few rounds of chemo, I underwent 2 major back surgeries and an auto SCT that unfortunately did not keep me in remission for much more than 6 months. I have had my ups and downs with various maintenance meds. Earlier this year, on a weekly dose of dex, Velcade, and Cytoxan, my light chains went down to 44, which is the lowest they have been since diagnosis. It was then, however, that I made the decision to go without any chemo for 6 weeks while I fulfilled an item on my bucket list (seeing Europe). It was well worth it, except that when I returned, they had risen to 188 and, even though I have resumed taking weekly chemo, my numbers aren't improving.

I have been following a low carb high fat (LCHF) diet for almost a year and recently my son has been encouraging me to go into ketosis. After reading through your discussion thread here, along with several others, I have decided that it would be worthwhile for me to do so. You have been an inspiration to me and I thank you for your time and dedication in writing so openly about your decisions, experiences, and progress.

One of my staple meals is made right in my Vitamix. I put coffee (self roasted), homemade ghee, collagen powder, MCT oil, liquid Stevia, grass-fed butter, and a raw organic, pastured egg. This often keeps me satisfied for hours.

I love your advice about eating different varieties and colors of vegetables. I am also very in­ter­ested in curcumin and have noticed that most people are quite positive about it. Perhaps I should order some soon.

Any advice you can offer would be very much appreciated.

Judy

judyf
Name: Judy
Who do you know with myeloma?: self
When were you/they diagnosed?: Dec 2011
Age at diagnosis: 59

Re: Ketogenic diet and multiple myeloma

by antelope1225 on Sun Aug 16, 2015 4:21 pm

Hi Judy.

I am so glad you could tour Europe for 6 weeks! How fun. You must be very pleased to have a caring son who is getting a degree in electrical engineering and going on for his masters in nutrition.

There are many people on the forum like you and me. It is as if when, we were diagnosed, our bodies (compare to our house) were infested with termites (cancer cells) and the oncologists hit the cancer with strong chemo and ASCT. That brought the number of cancer cells way down - but now we find there are still cancer cells. For a whole year I took Revlimid every other day (like using a "bug bomb" every other day on my house). That did not completely get rid of the cancer, and I think it is wrong to tell people who have a little cancer (MGUS, smoldering, borderline remission) to ignore the cancer cells they have until the cancer multiplies up to a certain point and then treat it.

If those same people had a house that had been infested with termites and then they saw just a few termites, they would not ignore them! They would fight them with "cures" that caused as little damage to the house as possible. I am making this analogy because I would not want someone who had stage 3 multiple myeloma to think they could just use these ideas and have it be enough.

If you are eating low carb and high fat and you are having MCT oil in your coffee, you are 90% there. It took me about 40-50 days to actually get into ketosis. I had to eat more coconut oil or MCT oil and less protein and carbs. So, I try to have 1 T coconut oil with each meal. You can either refrigerate the coconut oil so it is hard and swallow a few lumps of it like it is a pill. or make a hot cocoa with hot water, coconut oil, grass fed butter & 1 T organic cocoa and a little stevia. Or add it to any tea or put the MCT oil in homemade lemonade (lemon juice, water, MCT oil, Stevia).

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 antelope1225 on Sun Aug 16, 2015 4:39 pm

Judy, you can do a search on this forum for curcumin but I will also tell you what I have learned.

Curcumin is the active ingredient in the spice called turmeric Turmeric is eaten in India and they have much lower rates of cancer and most chronic diseases. Curcumin has been found to be anti-inflammatory and work against many types of cancer, Alzheimer's, Parkinson's, arthritis and other problems. But you need to get it in a way your body can absorb it.

I take 6000 mg curcumin with Bioperine (6 pills that are 1000 mg each). I take that on an empty stomach (first thing in the morning) about an hour before eating. I also take 1000-1500 mg omega-3 oil pills (3 pills) at the same time and sometimes also have a little coconut oil.

I also take 1 tsp black cumin seed oil (Nigella sativa) in the morning – about an hour after the curcumin. It boosts the immune system and also battles cancer.

Then I either have a scrambled egg with sun dried tomatoes and olives or some other vegetable.

Or I make a smoothie with canned full fat coconut milk + a few of the following: chia seeds, nutritional yeast, walnuts, baby kale, unsweetened frozen cranberries, blueberries, powdered green tea or actual cup of green tea etc.

I have coffee with coconut oil - similar to your coffee. For lunch and dinner, I have a green salad & 2 oz meat and cooked vegetables (lots of variety). I usually have oil and vinegar dressing and have coconut oil in tea or hot cocoa or MCT oil in lemonade.

I take supplements, too - but this post is getting pretty long.

Cathy
Last edited by antelope1225 on Sun Aug 16, 2015 4:46 pm, edited 1 time in total.

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 antelope1225 on Sun Aug 16, 2015 4:45 pm

Thanks for the tip about natto, Mrozdav. I have never seen it available and think I will stick to the other ideas at this time.

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

by antelope1225 on Wed Sep 16, 2015 3:54 pm

Quick update:

My Kappas were down almost to normal!!! HURRAY lowest they had been since last December!

Normal is up to 19.4 and mine were 21.1.

I said I would like to take a holiday from taking any prescription chemo - and he looked up and smiled and said, "well, you already are on a holiday from it aren’t you?" :-) I have only had one 5 mg Revlimid since July.

I showed him my info about MSG and other sources of "free glutamate" and he said he might have to cut those out too – said he often has insomnia.

At the end he scheduled me for 3 months out because I am so stable. Then he smiled and said, “you are a fanatic” and I laughed and said, “yes, but it is working.” And he said, “yes, keep doing what you are doing.”

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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