Why am I doing Ketogenic diet? To stop GIST tumor progression

The goal:

• Maintain urine ketone levels approx 60-80mg/dl for 4 weeks, without significant symptoms, until surgery, or be able to prevent it.

I was studying Ketogenic diet's effect on cancer. It seems to reduce seizures in children by 50% (Kossof), is somewhat well tolerated by 5 out of 16 advanced cancer patients (Schmidt M), and slows tumor growth/survival time by 56.7% in mice. (D'Agostino). Complications are generally less severe than with surgery (Kossof) and includes low-grade acidosis and hypoglycaemia, and long-term use increases risk of kidney stones.

From Thomas N. Seyfried, Boston University. 

Ph.D., University of Illinois, Urbana-Champaign
Phone: 617-552-3563
E-mail: thomas.seyfried@bc.edu

Learn Alternative Treatments to Cancer Prevention and Treatment

"Phase I would gradually lower circulating glucose levels and elevate circulating β-OHB levels over several weeks using CRKDs or therapeutic fasting. Blood glucose ranges between 3.0 and 3.5 mM (55-65mg/dl) and β-OHB ranges between 4 and7 mM should be effective for tumor management." 

"Phase II of the therapy would involve surgical resection. The diet should halt progression and more clearly delineate tumor tissue from surrounding normal brain tissue."
http://www.cancerjournal.net/article.asp?issn=0973-1482;year=2009;volume=5;issue=9;spage=7;epage=15;aulast=Seyfried

   

The challenge:
Stomach lump, upper left quadrant. (It showed up as a GIST 6cm in CT scan Dec 2012, but now I actually feel a lump. Either due to my weight loss, or tumor progression.)

2013/07/12:  
 

2013/07/23  (Day 18 of KD)



Ketogenic diet and GIST tumors, Dr Phil B.  M.D

Its not clear if GIST will respond to ketogenic diet. But, based on some general information, GIST are likely to because:
1. Neuro origin of cells.
2. "Tracing the roots of this disease to cellular respiration has yielded a promising lead on how GIST tumors might form,": cellular respiration typically means a defect in the mitochondrial function of oxidative phosphorylation. That would make this tumor dependent on fermentation of glucose for its energy.
3. The researchers examined tissue from 34 GIST patients for mutations in the genes for succinate dehydrogenase, an enzyme that processes oxygen to obtain energy for cells. [Again, cellular respiration of oxygen occurs in mitochondria-lacking this the cell metabolizes glucose with no alternatives]
4. Although the remaining patients did not have any of these mutations, succinate dehydrogenase in tissue from their tumors did not appear to be functioning and cellular respiration was disrupted. [disrupted CR means glucose is left for energy]
Therefore it is likely that these tumors are glucose sensitive. Deprivation of glucose with a Very Low Carbohydrate diet (ketogenic diet) may be effective in stopping progression or enhancing the effects of other cancer agents, like imatinib.

Effects for mercury toxic individuals, Andy Cutler, PhD:

The ketogenic diet does NOT chelate any mercury or other heavy metal.

What it does is let your body skip the part of the energy producing cycle
where you make lactate then pyruvate from glucose, then turn the pyruvate
into acetyl-co-A which makes the krebs cycle go round and spit out ATP. The
"ketone bodies" which are acetoacetone and related things make acetyl-co-A
directly.

The vast elevations of lactate and pyruvate seen in heavy metal tox indicate
that the conversion of glucose into energy is impaired, so you won't have any
energy for your body to work if it is burning carbohydrates. The ketogenic
diet skips some biochemistry that is a problem for some toxic individuals and
thus makes them feel a LOT better.

Atkins might cause:

1. Your liver has to do a lot of work.

2. You could cause gall bladder problems having to digest more fat.

Effects for arsenic toxic individuals:

When you have high arsenic, then Andy does recommend a ketogenic or as much of an Atkin's style diet as you can stand. He talks about this in HTI on pages 91-92. Arsenic can cause impaired pyruvate handling and can be misdiagnosed as type 2 diabetes, and these people usually feel better on the Atkins diet.

But he also says that adrenally insufficient people need to eat some carbs, and may not tolerate Atkins or ketogenic style diets. And goes on to say that if you have both, arsenic and adrenal insufficiency, you may feel miserable all the time because your body can't use the food you eat.

Well, I have both, and I think I am kinda in this boat. In general, I do feel best when I eat meat and veggies. But I do seem to need some carbs sometimes. But when I eat too many carbs, like last night, my blood sugar shoots up, and I don't feel good. And I usually feel better when I don't eat for awhile, but I know that's not good for me either, but I think that's a blood sugar thing.

Anyway, I don't think that any one diet is right for everyone, but when you have arsenic, the Atkins diet is supposed to help.
-Jackie

Getting started:

According to the keto calculator, to maintain my weight of 110lbs at 5'10, I need:
2023 kcal/day 25 g Carbohydrates (5%) 85 g Protein (17%) 176 g Fat (78%)


Normal Diet before therapy

Ketogenic Diet attempt

Total (approx): 1131 cal,  94 protein, 90 fat, 32carb. (~1200-1300 calories with bone broth)


Here's my attempt, it's nowhere near where it should be. I can't imagine how to get it down to 25g carb. That's going to be hard. I'm intolerant to half of the vegetable world (broccolli, beans, spinach, etc) due to mercury toxicity. I can only eat low thiol sulfur foods.

If I eat the same meals 3x/day (turkey, zucchini, celery, olive/coco oil, etc) and snack 2x day (pumpkin seeds, 10 almond nuts, zucchini, coco oil) I'm at 1131 cal, 94 protein, 90fat, 32carb. I still need 800+ calories. How do you get so much calories without drinking oil? I think I'll try to increase bone broth instead of just water, that may help me increase my calories. I see 1 cup of beef bone broth is 40 cal, 2g fat and 0 carb. If I drink 4 cups that's an extra 130 calories. 
 

Three meals (same breakfast/lunch/dinner)



Two snacks.

Supplements to manage side effects:

Vit C 500mg,   1-2x/day

Vitamin C (as ascorbic acid)	500 mg
Calcium (as calcium carbonate, dicalcium phosphate)	50 mg
Proprietary Mineral Blend providing:	275 mg
Mineral Blend (from calcium carbonate, magnesium hydroxide, gum acacia, dicalcium phosphate, potassium hydroxide)
Quercetin (from sophorae japonica linn) (flower)
Organic Aloe Vera (ActivAloe) (Inner fillet, leaf)

-Magnesium 166mg 1-3x/day

-Vit E 500IU and Selenium 150mcg  1-3x/day

-Bone broth soup with sea salt. (sodium)  1x/day

-Coconut water (for natural electrolytes).1/3 cup during saunas, every 2nd day.

-Herbs (sage, oregano, ginger, peppermint, etc) to help fat digestion.

Measuring progress:

What are the most reliable ketone monitoring devices out there? After some research, I decided to use Bayer's Ketosis urine strips, it's affordable and good enough.


Diary:

Day 1. (6th July)
Transition phase, only replaced snack with low carb.
Headache fatigue at night  7/10

Day 2
110.0lbs
Ate 3 keto meals but added carbs squash

Headache fatigue 5/10
Constipation
Rectal pain

Felt less bloated, lighter

Day 3
110.4

Morning Headache
Legs tired
Stool hard and slow
Brain dead/mental unfocused
Throat clogged

Drank more bone broth, salt

Day 4 (9th July)
110.0
No headache
No fatigue
Ph 7.4
Stool long and easy pass
Stomach lump feels hard/bigger
Lung pain/shortness of breath (mild acidosis or reactive hypogleciemia, eat more carbs/protein)

Comment: I had shortness of breath. After my consultations, I've been told its a symptom of mild acidosis (if accompanied by nausea or fatigue), if not, then it's reactive hypoglycaemia. Both of which can be managed by eating a bit more carbs/protein. I'm feeling less out of breath now.

 
More acne

Day 5
110.6lbs

Indigestion/throat bubbles
Sleepy, overslept

Day 6
110.0lbs

Headache 6/10
Sleepy 7/10

Day 7
Bad breath
Headache 4/10
Tested ketone levels

Ate more carbs for dinner (butternut, 10 almonds)
Energy 9/10, Headache 0/10

My Comments:
I was aiming 25-30g/carbs, but that seemed too low for me. According to this test, I'm high in ketones. Maybe I need to eat a bit more carbs.  I wonder if it's easier to reach ketosis if you're underweight. I'm only 110lbs (not diabetic) and even with a fair amount of carbs (30g), I seem to go into high ketosis.

I've been told many people can achieve mild ketosis with <50. Atkins started with 20 to induce the state. Everyone has a different metabolism variation.

Day 8  (July 13th)
108.8lbs
Headache 0/10
Ate "normal" carb breakfat (sweet potato, beets, butternut)

Tested ketosis: "small range".

13th

Constipation, small stool
Stomach discomfort 5/10



Day 9
Back to low-carb
Ketosis: small

Bubbles/throat
Normal stool
Bad breath


Day 10
109.0
Ketosis: small


New foods/tests:
1/8 probiotics Udo infant formula
Thyme herb
1g chocolate (high sulfur)

Day 11 (July 16th)
107.8lbs  <-- weight loss? Not good
Ketone not tested
Ph 7.4
Tired at sauna/afternoon 6/10

New:
Herbs basil and Italian mix
3tb olive oil dinner
Ran out of vitamin E and selenium

Headache 4/10 evening/laptop

July 17th  (Day 12)
Woke up with headache. Brain dead all day. No energy to do anything.

Possible causes:
-Started before sauna.
Too Low carb?
Chocolate sulfur?
Herbs?
No Vit E/selenium?
Too much Curcumin?
Not enough B complex?

Cause turned out to be low-carb.
---

July 23th (Day 18) Week update
Since that "brain dead" day, I increased my carb intake since I had zero energy. I'm trying to
find the 'sweet spot' - how much carbs do I need to induce mild ketosis without symptoms?

• I'm aiming for 50g/day but haven't achieved ketosis.
• I'm 108-109lbs.
• I added many spices to help digestion
• I began marinating my turkey to reduce carcinogens.
• I reduced turkey from 2x/day to 1x/day and replaced it with avocado to avoid relying on eating too much meat.
• I began Chinese bitters/Astralagus to boost NK cells
• I added fruits (blueberries) to increase burytic acid, which apparently a low-carb diet decreases
• I added a tiny piece of barley bread (1/6 of a slice) to avoid food groups and prevent long term problems.
• I'm applying frankinscence oil topically on the tumour 2x/day.
• I learned that this statement is simply not true. "The KD has virtually NO side effects, except fat loss, and  functions to shift the metabolism in a way that restricts cancer growth and metastasis."

Symptoms:

Nothing major except occasional headaches and fatigue.
Noticed less stomach pain and lump feels less hard.
My stools are finally sinking instead of floating (a symptom of possible fat malabsortion).

Weekly diets:

July 25th (Day 20th) weekly goal:

• Aim for 30-35g of carbs
• Achieve mild ketosis 
• Solve recent constipation by reducing cinnamon and drinking more water

july 29th (Day 24)
Small-medium ketosis past few days!
Still losing weight- 107.4lbs.. not good
Carb around 35-39g
Pain in the upper right abdomen, nausea (liver, pancreas, gallbladder, unknown cause...)
Diarrhea past few days (guar gum from coconut milk?)

August 1st (Day 27)

Day 27 of Keto diet.

Average ketosis: 40-60mg/dL.
Pros: None noted.
Cons: Headaches, constipation/diarrhea, fatigue, shortness of breath, abdominal pain, nausea, weight loss.

Conclusion: Without regular CT/MRI scans, it's difficult to determine if the diet has any effect on tumor progression based on pictures alone. Symptoms aren't responding to treatment management and supplements. They may suggest stress on the liver, fat malabsorption, and/or a contraindicated condition possibly from mercury poisoning.

• Current ongoing symptoms:  
• Diarrhea, unknown cause. (Possible culprits: coconut milk, avocado, or fat malabsorbtion from KD diet.)
• Pain in the upper right abdomen, nausea (liver, pancreas, gallbladder, unknown cause...)

Dr Phil, MD: response to update:

I'm sorry to hear that you're having such a difficult time.
Most of the symptoms that you describe are consistent with the transition to a ketone metabolism. This is often referred to as Atkins flu or rabbit illness. The abdominal pain is an exception. That's a vague term that's difficult to interpret. Usually, this phase lasts for 1-2 weeks and resolves.

 You also say that your symptoms are not responding to treatment management and supplements. But you don't tell me what those are. Suggestions such as stress on the liver and fat malabsorption can be defined objectively with liver function tests and stool testing. But, more commonly fat malabsorption is pretty characteristic so that a history is sufficient in most cases.

Nevertheless, it is clear that you are in ketosis and that you do have a total calorie deficit. I can only guess that your glucose levels have been in the baseline region which is the goal of this therapy.

So in conclusion It looks like you are achieving the goals of restricted ketogenic diet which will deny glucose to the tumor. On the other hand, you are experiencing numerous side effects that, for the most part, are consistent with the typical transition to being a "fat burner". The only exception is the abdominal pain for which the cause is not clear. It would not be difficult for you to visit a primary care provider and have him look for signs that something unusual is going on. That might include some chemistries to look at your electrolytes, liver function tests and a stool specimen looking for blood.

In the past I have suggested some text references including "the new Adkins" and "the art and science of low carbohydrate living". There is also Ellen Davis's book, the restrictive ketogenic diet book for cancer. But, I'm not sure how closely your following those recommendations.

Ultimately, the big question is whether this treatment program is making a difference regarding the tumor. Certainly your provider is going to restrict the number of CT scans or other imaging. But, sometimes they can tell by examination or you can tell by examination with a millimeter ruler, picture sequences from your camera, or other signs that you can get from just observation alone.

No One is recommending that this dietary program be your only therapy.There is good evidence that the dietary program works well in concert with chemotherapy and radiation therapy. That would also be true of surgery. Unfortunately, few providers are willing to support such a radical approach to lifestyle/dietary modification. So, you'll have to rely on the guidance that is available from books, web, and your own intuition.

The other option is to hook up with a dietitian or nutritionist who does support the program in your region or vicinity and can give you day-to-day guidance with problem-solving.

I really hope that you can get through this tough phase and get these problems resolved so that you can see the positive results from the program and your therapy for the tumor.

Dr Phil, upon reviewing supplements:

I would be concerned that some of your supplements cause some of your symptoms. These are not all standard recommendations.

Some Magnesium salts can cause diarrhea and cramping, its the same as milk of magnesia for constipation. Other formulations are better absorbed and tolerated. Its true for me. I have used Slow Mag and Ionic Magnesium to compensate. Coconut water could also cause issues depending on its composition.

LCD does not cause liver stress but to address you concern LFTs can verify.

What to do: if you have increased LFTs your doc should look at all causes.

Very few individuals have difficulty digesting fat, except if they have had their gall bladder removed.

My thoughts:
-Unlikely that supplements or coconut water are causing recent diarrhea (I've been on them for months, and actually reduced them a week ago to identify culprit, but symptoms remained.)
-

Suggestions on diarrhea, from a dieter:

Two things come to mind: 1) you're not able to process the fats, so they're flushing everything through, or 2) your liver's dumping major toxins that are causing a reaction in the gut. Well, there's a third one that comes to mind - if your gut is unable to absorb through it's walls because of too much build-up, you'll also start flushing because the water from your diet won't be absorbed. In the past, it may be that the starchy foods/grains were doing the absorbing making it seem normal, but it wasn't. See which one resonates with you. If you're experiencing digestive discomfort when you're eating the fats, it's most likely your gallbladder not helping you keep up. Also, if you drink water with your meals, you're diluting your digestive juices and hindering your ability to properly break down your foods. Hope some of that helps shed some light on the situation.

Action steps:

-"Usually, this phase lasts for 1-2 weeks and resolves." Wait until Aug 9th if symptoms improve.
-If no improvement, see a GP.  (What to do: if you have increased LFTs your doc should look at all causes. If fat malabsorbtion or liver stress is the cause of the symptoms with liver function tests and stool testing.  (some chemistries to look at electrolytes, liver function tests and a stool specimen looking for blood.)
-Continue measuring tumor size with camera pictures w/ mm. ruler.
-Increase calories - I have a total calorie deficit.
-Continue with vitamins/minerals.


Update aug 21st (Day 46 of Ketogenic diet)
Noticed loss of tooth opacity (dental erosion)
Frequent muscle cramps
No noticeable changes in tumor size

Suspect bone and enamel loss due to ketogenic diet as shown in this study:
http://www.clinicalneurologynews.com/index.php?id=9985&type=98&tx_ttnews%5Btt_news%5D=213282&cHash=da03e20e36

 The following daily supplements are recommended:
•    A carbohydrate free multivitamin/mineral supplement. Make sure it contains 100% of the RDA for selenium and zinc. There aren’t many choices on the market. I found a brand called Nutri-Align in the UK which is specifically made for people on a low carb diet. Solace Nutrition makes carb free vitamins for kids with epilepsy, and maybe these could work in larger amounts.
•    2000 IU of vitamin D3 in the form of cholecalciferol. Country Life makes a gel cap product made with medium chain triglycerides.
•    500 mg of calcium citrate daily (Now Foods, Nature Made or Caltrate) •    Nordic Naturals Omega 3 fish oil, 2 capsules daily to provide essential
fatty acids •    Magnesium, 400 mg Magnesium Citrate daily •    CoQ10 (Ubiquinol or Ubiquinone), 100 mg daily
•    Potassium in the form of Potassium citrate (PolyCitra K is one recommended product). Adults should take one packet in the morning and one in the evening mixed with water.