First Baby steps of ketogenic diet- (By the Inch is a cinch, but it is hard by the yard)

In chronological order of discovery – not in order of importance.

1. 3/24/14 I asked oncologist if cutting out sugar would help me keep my cancer down. My Oncologist said, “It is not just the sugar you eat, it is your blood glucose that you need to keep low and steady.” He suggested I find a good diabetic diet and try to keep my blood glucose low and steady.
2. March 2014 – . The first book I read was Diabetes Diet by Dr Bernstein.   Later I read Dr. Bernsteins Diabetic Solution – which has an excellent index and very helpful list of medications that impact blood glucose.  It is still one of my favorite reference books.  I tried to follow his advice – 6 g carbs in morning, 12 g carbs at noon 12 g carbs at night  At this time I was taking a couple of probiotics – I rotate them and I always take a probiotic called Saccharomyces Boulardii within an hour of taking an antibiotic. I wholeheartedly committed to the diet as a lifelong change- much like quitting smoking.  I cleaned out my recipe file – this was my new life style.  The first month was hard – I would come home and flop down exhausted after work.  I did Internet searches  to boost my resolve. I looked up “cancer & blood sugar” and found many studies which I have linked on the page Dr Bernstein’s book and read the example of he and others with diabetes who went radically low carb, measured their blood glucose and lived a healthy long life.  I got a glucose meter to test my own blood and see what caused my blood glucose to spike.  That was very motivating because it gave me real feedback.  I could see what caused my blood glucose to get bumped up.  For example,  sugar free candy would cause my blood glucose to rise.
3. 4/28/14     25.4mg/L   I was encouraged that my cancer markers came down a bit and surprised that kidneys improved. Started taking blood glucose readings and being amore careful. – Creatinine 1.463557 (significant improvement).  I read the new Atkins diet book nd the authors suggested increasing the amount of sodium- I felt much better when I increased my sodium intake. .
4. May 2014  (I like to read).  I read:
   1. The Art and Science of Low Carbohydrate Performance Interesting studies on how ketogenic diet impacts athletes.  Especially long distance or endurance athletes can tap into fat stores rather than trying to keep going on blood glucose.
   2. The Art and Science of Low Carbohydrate Living by Jeff Volek PhD, RD and Stephen D Phinney MD, PhD
   3. New Atkins Book  I had been doing low carb 6 weeks and realized I needed more vegetables and more salt. So, I started eating more salt and felt much better. (note, that I cannot eat any Atkins products – the frozen dinners, the bars etc all make my blood glucose spike)
5. Cancer as a Metabolic Disease: On the Origin, Management, and Prevention of Cancer – Dr Seyfried  was Heavy reading – Written to fellow PhD’s  presenting evidence that cancer is not genetic but metabolic. (can take nucleus out of cancer cell and put in normal cell and it does not make new cell cancerous).  He has detailed research going back to the 20’s and 30’s showing that all cancer cells have defective mitochondria – which should make them quite vulnerable to stress. The goal is to starve cancer cells by avoiding carbs. Healthy cells can use ketones, cancer cannot – so  the goal is to be in constant ketosis – a ketogenic diet. I got a ketone meter and started taking ketone readings at night – they were .3to .7 (not very impressive) after over a month attempting to eat low carb.
6. 6/20/14   Blood tests the best they had been in YEARS!  My nephrologist put me on Vit D. Read about coconut oil to raise ketones. Started cooking with coconut oil and adding it to my coffee 
7. July 21/14  kappa free light chains were 14.87 mg/L (1.487mg/dL) !  Creatinine =1.48470
8. Aug 18/14 kappa free light chains were  12.23 mg/L  !!! Creatinine 1.403098
9. September  24 2014 kappa free light chains: 16.21 mg/L up a bit I didn’t eat carbs, but ate vegetables, cheese, eggs, protein in whatever quantity I wanted.
10. November 11 2014 kappa free light chains up to 23mg/L (above normal) I have had 3 sets of childhood immunizations after my bone marrow transplant and wonder if they lowered my cancer markers.  I had DPT, Hep B, HiB and Pneumococcal vaccines on 11/14/13, 3/10/14 and 11/18/14 Since my cancer markers had gone up above normal again,  I had to reevaluate- I read – Ketogenic diets – Treatments for Epilepsy and Other disorders ( Dr’s: Kossoff, Freeman, Turner, Rubenstein)- written by 4 doctors from Johns Hopkins for parents of epileptic children who are planning to do ketogenic diet.  What I learned: These guys are serious about avoiding all sources of glucose and maintaining ketosis!  They even have a helpful list of toothpastes and other products that are low carb!  Who knew that suntan lotion could impact your blood glucose?!  About 50% of their patients are seizure free with ketogenic diet and 35% have a significant reduction in number of seizures but 15% have little or no improvement.  It is also very difficult and takes a lot of commitment.  Ketogenic diet mimics fasting. Some ketones give breath a sweetish smell.  Ketones protect healthy cells while glucose is low.
11. I found a friend who also has Multiple Myeloma and is a professor at a University in Texas. She is willing and excited to do this with me – the encouragement, sharing links to research and recipes is a HUGE blessing.
12. December 3 2014 kappa free light chains back down a bit to 20 mg/L-  I read:– Tripping over the truth. Travis Christofferson (copywrite 2014)  This reads like a series of short stories about the history of research for a cure for cancer.  Warburg (a friend and roommate of Einstein) hypothesized that cancer was metabolic disease but did not have the high powered microscope to prove his theory –  the scientific community rejected his theory for decades.  Another research scientist named Pedersen spent 3 decades building on Warburg’s ideas, but all attention was on new chemotherapies so he was out of the limelight. Pedersen and his assistant Ko were able to use high powered microscopes and see that cancer cells had few mitochondria and the mitochondria were damaged. They discovered hexokinase II which enabled PET scanning of cancer cells (A PET scan detects cancer cells bloated with glucose). Ko discovered that 3BP (3-bromopyruvate) was a powerful anticancer substance – but it has still not been approved for treatment.   Dr Seyfried called Pedersens work “a masterpiece” .  Seyfried discovered that calorie restriction impairs cancer – and found that ketosis mimics fasting.  The ketone bodies could be used for fuel in healthy mitochondria but ketones killed or slowed the growth of cancer cells.  He found that combining traditional cancer therapy with a ketogenic diet was very powerful  2015____________________________________________________________________
13. Feb 2 kappa free light chains up to 24 mg/L (slightly above normal) but my ratio of kappas to lambda’s was still around 1 – It was harder to keep my glucose down even with a very strict low carb diet.  I started taking some vitamins but felt uncertain what to take.  I bought various vitamins to see what would help
14. March 23 2015 kappa free light chains still at 24.5 – slightly above normal.  The big improvement was my kidney function.  Creatinine was 1.18 for first time since before spring 2010!!! After March 23 2015 vitamins I am trying a.m.                                                       p.m.
    • 1 Garden of Life multi            1 garden of life Multivitamin
    • 2 cranberry pills                   2 cranberry pills
    •  1 calcium + D                              1 calcium +D
    • 1 sodium bicarb                          1 selenium every other day
    • resveratrol                                    1 vitamin C
    • Acyclovir (prescription)        1 Mag 64 (prescription)
    • Omega 3 with Vit D                    Curcumin 500 mg.

    Didn’t sleep well for 5 days on this – found out that if you take Vitamin D at night it can keep you awake!   I decided to go back to what I was doing in summer 2014 – no Revlamid.  Also several of my blood tests were worse since I added iron (Dr. prescribed at end of Jan). Quit iron March 23, 2015.  I moved Omega 3 which had D to- morning I re read my ketogenic diet and realized some of the supplements had carbs in them. (Note, see supplements page to see what I take now)

15. May 2015 I bought Breaking the Vicious Cycle – much of what the author suggests, I already do.   She didn’t think coffee was good & I quit coffee for a year.  This book pointed out how you should watch out for mixed nuts or smoked almonds – they have carbs.  She preferred fresh tomatoes and no canned products.  She said to avoid all milk products except home made yogurt.(I tried but didn”t stay with this)  When yogurt ferments at least 24 hours, it is supposed to eat up all the lactose and be a great probiotic – but every attempt at yogurt resulted in too high glucose for me.  Also she recommended sauerkraut and fermented vegetables. This book recommended baking soda not baking powder, no cornstarch.  I have implemented those but I need to keep my focus on low glucose and high ketones, since that is the foundation.
16. I quit Revlamid after reading the following articles.  I was down to just 5 mg per week before reading these, but I read that Revlamid does not improve overall survival.   http://news.cancerconnect.com/revlimid-after-stem-cell-transplantation-delays-progression-of-myeloma-but-does-not-improve-overall-survival/
    Revlimid http://journals.lww.com/oncology-times/blog/onlinefirst/pages/post.aspx?PostID=1282
17. June 2015 I read Wahls Protocol.  Dr Terry Wahls has Multiple Sclerosis and was confined to a wheel chair – through electric stimulation of muscles and a ketogenic diet, and carefully eating nutritious food, her health  improved to the point she can walk again!  She continues to do studies on this and is now doing clinical trials to try to duplicate her results.  Terry Wahl recommends and eats a LOT of vegetables and organ meat.   She also recommends 3-4 T coconut oil per day.
    • 2 c greens per day,
    • 2 c colored vegetables per day,
    • 2 c sulfur containing vegetables per day.

    1 take 1 500 mg curcumin C3 with bioperine per day this month.

18.  I quit all artificial sweeteners except Stevia and Monk Fruit (I stayed with this permanently)
19. July 23, 2015.  My kappas were up a bit – 24.8 and ratio was also up to 1.35- right on upper edge or “normal” for the ratio I had quit taking Revlamid for the last 6 weeks.  I worried I must be getting more glucose intolerant – my blood glucose bounces up over every little thing.
20.  July 2015 Learning about Curcumin from “Healing Spices” by Dr Arggawan from MD Anderson. Increased Curcumin to 6 g per day. I will increase Curcumin to 6 g per day & green tea to fight angiogenesis.
21. 9/4/15.  I noticed something significant.  I was just listening to Dr Thomas Seyfreid speak and he says that there are 2 fuels for cancer cells:  Glucose (I have spent nearly all my attention on this) AND Glutamine – which is an amino acid in protein – so I decided to cut back on protein.  I eat 2 oz meat per meal (I am a small woman 5’2″ 118#)  I have spent most of the last 16 months focused on controlling blood glucose – but I did some searches of glutamine and found that it converts to glutamate…as in MSG Monosodium glutamate!  I will start another “page” devoted to this.
22. 9/11/15 I went through my kitchen and threw away a lot of food and supplements with “unbound” glutamate.  Got rid of my whey protein powder, nutritional yeast, low sodium ” salt” package mixes of hidden valley dressing and gravy and a lot of canned foods. Probably threw away 1/4 of everything in my kitchen! Cut out some of supplements . Discovering MSG/ glutamate connection for cancer (children with autism can sometimes control the autism by avoiding free glutamate).  Glutamine is the source of Nitrogen for cancer cells.  Cancer cells use 10x as much glutamate as normal cells. 
23. Wed Sep 16, 2015 My Kappas were down almost to normal! Thank You, Lord, they were the 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 Dr. looked up and smiled and said, “well, you already are on a holiday from it aren’t you?” I have only had two pills 5 mg Revlimid since June. 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.”
24. What I have done differently in the last 2 months.
    1. I continue the ketogenic diet – take blood ketone and blood glucose readings every night
    2. I took 6 g Curcumin per day with 1500mg Omega 3 fish oil to help absorption (I think this is really important)
    3. I took about 1 tsp black cumin seed oil per day
    4. I take 3 T of coconut oil or MCT oil every day
    5. I had 1/2 tsp horseradish per day (not sure if that is anything significant but it is high in sulfur)
    6. I had green tea powder more often. I do not really like green tea so I got it powdered and put 1/2-1 tsp of it in smoothie

What I will work on this next 3 months:

1. All of the above and also
   1. no artificial sweeteners except small amount of stevia
   2. vegetable smoothie most days for breakfast.
   3. Avoid MSG and all “free glutamates” that I possibly can
   4. Minimize cheeses and Dairy. My actual chart of what to do daily is below