GIST Support Wiki

 
Supplements

Supplements are defined as ingredients, such as vitamins, herbs or minerals, added to make up for a deficiency, or extend or strengthen the whole. Wisely selected supplements may help ensure optimal nutrition. Please make sure talk with a registered dietitian and/or your doctor about any supplements that you use. [Registered dietitians have a significantly broader and deeper nutritional education than doctors do, but doctors often know in-depth nutritional specifics about their respective specialty.] This FDA website supplies info on making informed decisions and evaluating information when it comes to dietary supplements at: http://www.cfsan.fda.gov/~dms/ds-savvy.html#tips

Medline Plus offers up-to-date research on specific vitamin requirements at: http://www.nlm.nih.gov/medlineplus/vitamins.html

The National Institute of Health (NIH) has loads of nutritional and health information at: http://health.nih.gov/

Mayo Clinic Drugs and Supplements page http://www.mayoclinic.com/health/drug-information/DrugHerbIndex

National Center for Complementary and Alternative Medicine, NIH http://nccam.nih.gov and their Herbs at a Glance page http://nccam.nih.gov:80/health/herbsataglance.htm

Office of Dietary Supplements, National Institutes of Health (NIH) http://ods.od.nih.gov

Memorial Sloan-Kettering Cancer Center page "About Herbs, Botanicals, and other products" http://www.mskcc.org/mskcc/html/11570.cfm



Contents

CURCUMIN (TUMERIC)

Turmeric is the normal spice, ground up from the root of a plant. Curcumin is an extract from turmeric... not normally available except as a supplement. Curcumin has the yellow color (and in fact is used as a coloring in many foods). I have broken curcumin capsules apart and dissolved it in olive oil (which makes it more easily absorbed by the body) and it has very little flavor. So if you cook with turmeric you get a little curcumin. You can also buy turmeric extract capsules (Turmeric Force by New Chapter brand) that are concentrated and they smell spicy right through the capsule.

Melatonin

Interesting article in then June edition of Life Extension Magazine about the benefits of melatonin:

"In addition to its benefits for cancer survival, melatonin may also help counteract the toxicity of chemotherapy treatment. Two-hundred-fifty individuals undergoing chemotherapy for advanced cancers of the lung, breast,gastrointestinal tract, or head and neck received chemotherapy, either alone or in combination with melatonin (20 mg/day). After one year, the melatonin-supplemented individuals demonstrated a higher rate of survival, and were significantly protected against many of the side effects associated with chemotherapy, including decreased platelet count, neurotoxicity, heart damage, mouth sores, and fatigue."

When you go to check out Melatonin, look for the sublingual spray. It's an orange-flavored spray that's absorbed through tissue under the tongue so it goes into the bloodstream without having to burden the liver. Wish Gleevec and Sutent came in such a delivery system!

Found a good source, and yes, 20 mg is standard dose for cancer, even up to 50 mg. http://www.melatonin.com/melatonin-dosage.php

Iron Supplements

Iron is important for the production of red blood cells. Furthermore, hemoglobin is dependent upon the amount of iron in our bodies. Hemoglobin is the component in blood that supplies oxygen to all the cells in our bodies. Hemoglobin also removes waste products, like carbon dioxide, from out bodies. When hemoglobin is low then we become anemic - our hemoglobin is no longer able to supply us oxygen or remove excess carbon dioxide. This leaves us with lower stamina, fatigue, weakness, lower concentration, internal bleeding, pale skin color, fatigue, weakness, irritability, shortness of breath, sore tongue, brittle nails, unusual food cravings (pica), decreased appetite, frontal headache, blue tinge to sclera (whites of eyes).

You can see the Institute of Medicine iron recommendations at this link: http://books/hap.edu/openbook.php?record_id+10026&page=290

All adult men and women age 51 years or over need 8 mg of iron per day (minimum). Younger women need 18 mg/day due to menstruation. The median dietary intake of iron in the USA is 16-18 mg/day for men and 12 mg/day for women. Excess iron in the body is a problem. Novartis recommends consultation with your doctor before supplementing with additional iron.

Gleevec prescribing information "warns that if you are needing high doses, You should use the 400 mg pills because the pills are coated with iron, and if You take the 100 mg pills to reach a high dose ,You will be getting high levels of iron that may be dangerous. It says to use 2 - 400 mg pills to get the 800 mg dose."

GLEEVEC COATING looks like rust because it is rust -- FeO (Iron oxide -- garden variety rust.) The more common pharmaceutical iron supplement is FeSO4, ferrous sulfate. Each 100-mg Gleevec pill contains 0.813 mg of iron, while the 400-mg pill contains 1.944 mg of iron. So four 100-mg Gleevec pills would provide 3.252 mg of iron, versus 1.944 mg for the 400-mg pill.

If you took two 400-mg Gleevec pills per day you would get an extra 3.9 mg of iron, and if you took eight 100-mg Gleevec pills you would get an extra 6.5 mg of iron. The difference is 2.6 mg of iron. The difference is 2.6 mg of iron. Whether this additional 2.6 mg is a big deal is the question.

You could easily get this much by eating many foods, but they do not warn not to eat iron-rich food while taking Gleevec. Everyone can decide for themselves after discussing this with their health care professionals. If taking 100-mg pills enables a person to tolerate the higher dose, the 2.6 mg of extra iron seems like a small price to pay. I think "dangerous" is over-stating and that the warning is perhaps over-cautious.


A prescription called Repliva http://www.repliva.com/video.aspx contains iron (Fe fumarate), ascorbic acid (vitamin C) and succinic acid for best absorption.


In your multivitamin, some types of iron are more easily absorbed. Ferrous iron (ferrous fumarate, ferrous sulfate, and ferrous gluconate) are better absorbed than ferric iron. The most bioavailable form of iron supplement (ten to fifteen times more bioavailable than any other) is iron amino acid chelate. Iron is absorbed better when taken with Vitamin C.

Dietary suggestions for iron: highest is oysters, then beef liver, prune juice, clams, walnuts, ground beef, fish, poultry, egg yolks, peas, beans, raisins and whole grain breads. See http://www.umm.edu/blood/aneiron.htm for listing of iron-rich foods. If you eat primarily a vegetarian diet, most of your dietary iron is from non-heme sources...more difficult for the body to absorb.

You can read more about iron at the National Institute of Health (NIH): http://ods.od.nih.gov/factsheets/iron.asp

Vitamin B-12

If you have had a total gastrectomy or partial loss of small intestines, then you likely will not be able to absorb B-12. It is vital that you get B-12 either through regular shots of B-12 (inexpensive) or regular use of nasal B12 (expensive) [Note that B-12 patches on your skin DO NOT WORK - the B-12 molecule is too large to be absorbed by your skin]. If you don't get B-12 then you will develop a special form of anemia caused by lack of B12. With time you will even develop central nerve damage which can become permanent.

By using sublingual B12 tablets (they dissolve under the tongue) you should get a better results. They are widely used in Europe & is the choice of administration to the patient.

-Vitamin B12's primary functions are in the formation of red blood cells, the maintenance of a healthy nervous system, and the rapid synthesis of DNA during cell division. This is especially important in tissues where cells are dividing rapidly, like the bone marrow tissues responsible for red blood cell formation. Strict vegetarian diets, chronic alcoholism, Crohns and malabsorption disorders can initiate this deficiency as well.

Symptoms of vit b12 deficiency are numbness or tingling in the arms and legs, weakness and loss of balance, difficulty walking and diarrhea, depression and smooth, sore tongue.

Dietary suggestions: eggs, meat, poultry, shellfish, milk and milk products.


I consulted with Dr. Frankl at MDA this week. He is the alternative medicine doctor. I wanted to share his observations on B-12 because it is contrary to what I had always understood. He said that a good sublingual(with the potency it claims to have) is as effective as a shot for absorption. And that a B-12 pill is not absorbed (much) if swallowed.

Omega 3 Oils

Proper amounts of omega-3 fatty acids in our diets has some very important positive health benefits - it helps to lower the risks of getting cancer, cardiovascular disease, heart arrhythmia, arthritis, asthma, allergies, depression, diabetes, and disregulated body weight - really important stuff!

Omega-3 fatty acids can help you by: 1. thinning the blood and lowering inflammation in the body 2. improving the immune system, 3. helping with weight and appetite.

It cannot hurt to try to down-regulate NFkB, an item associated with inflammation and resistance to cell death. Omega 3 fatty acids help with this -- as in fish oil(at least 1 gram per day of EPA & DHA combined) To get the true benefit from omega-3 you need to drastically reduce the quantity of omega-6 you eat by eliminating corn oil, safflower oil, margarine, Crisco, etc -- just stick with olive oil, canola oil, and flaxseed oil.

There are two types of omega-3 fatty acids, long-chain and short-chain. Long-chain is the better of the two because it naturally contains EPA (eicosapentaenoic acid) and DHA (docosahexaenoic acid). Short-chain omega-3 needs to be converted by your body into the long-chain EPA and DHA.

Generally speaking it is considered a good idea to get at least 300mg of long-chain omega-3 oils in you per day. However, recommendations go up significantly from there. For example, the American Heart Association recommends at least 2 grams (2000mg) per day of EPA/DHA for heart patients.

The most common source of long-chain omega 3 fatty acids is from fish. Omega 3 supplements made from various fish oil have become quite common. Unfortunately, if everyone in the world decided to take omega 3 fatty acid tablets made from killed fish then what is left of the world's natural fisheries would collapse. The journal Science projected that the Earth's stocks of fish and seafood would collapse by 2048 if trends in over fishing and pollution continue. As it is, 15 of the 17 great fishing banks worldwide have been either completely fished out or seriously depleted from over-fishing.

Fortunately, it turns out that sea algae also contain long-chain omega 3 fatty acids. One big advantage these tablets have over fish oil is that sea algae doesn't have the same level of environmental toxins that fish do (things like dioxin and mercury are bio accumulative - so they gather in higher and higher concentrations the further up the food chain you get).

Another source of omega 3 is flax seed (freshly ground or flax seed oil). However, these contain short-chain omega-3, which needs to be converted to long-chain omega-3 fatty acids by your body. This process is dependent on the amount of omega-6 oils you have in your diet. If you eat too much omega-6 then your body cannot convert flax oil to the long-chain omega-3 because the converter enzymes are "used up" on omega-6. Western diets typically have ratios of omega-6 to omega-3 in excess of 10 to 1. The optimal ratio is thought to be 4 to 1 or lower. Omega-6 is primarily found in vegetable oils.

You can get omega 3 naturally by eating a few tablespoons of walnuts or flax seeds daily, or meals consisting of sardines, salmon or mackerel twice a week, or a tablespoon or two of cod-liver oil or other fish oils.

One brand using long-chain omega 3 from sea algea is V_PURE from Switzerland http://www.water4.net/products.htm (not a promo, just that sea algea omega 3 is hard to find). Each V-PURE tablets contain 75mg eicosapentaenoic acid (EPA) and 270mg docosahexaenoic acid (DHA) per dose. There are other brands available. Check your local health food store or the net. If you are a serious vegan/veggie then check to make sure they don't use gelatin in the capsules.

You can buy an Ensure-type product with omega-3 called Pro-Sure from Ross Abbot.

You can also take fish oil capsules (enterically coated ones to prevent burping) or add liquid flavored fish oil to foods, or just gulp a spoonful(lemon flavored is tasty!) which is best metabolized by your body. Make sure the brand is mercury-free!

More info on the benefits of omega 3 is available at http://www.nlm.nih.gov/medlineplus/druginfo/natural/patient-fishoil.html

Below is a link to a Medscape piece on fish oil. Medscape is free-access after a free registration. Fish Oil: Getting to the Heart of It: http://www.medscape.com/viewarticle/554507?src=mp This article emphasizes the heart benefits. The anti-cancer benefit is the anti-inflammatory factor (barely mentioned).

COQ10

CoQ10 improves function of the cardiovascular and immune systems simply by providing the cells with the raw material they need to function optimally. It allows the cells, and therefore the systems, to express their full potential. Without sufficient CoQ10, these systems (along with many others) are handicapped. There is simply no way they can perform their jobs at the level needed to sustain good health-they don't have the energy. http://www.uspharmacist.com/oldformat.asp?url=newlook/files/comp/acfaa8.htm http://www.cancer.gov/cancerinfo/pdq/cam/coenzymeQ10

Tina writes: "My husband and I run a support group for prostate cancer here in the UK and we have known of the benefits of COQ10 in fighting cancer and indeed heart disease. A lot of our members swear by it and put down their good health to the fact that they take a COQ10 supplement. One thing is for sure is that you cannot overdose on it and there are no harmful side effects. The lack of interest in CoQ10 by the pharmaceutical companies as a cancer therapy is caused by their inability to patent it. See the article on COQ10 by Dr Howenstine http://www.newswithviews.com/Howenstine/james2.htm - I have a very useful book on Q10 which I purchased in 1991 by Dr Knut T. Flytlie where he goes into great detail.

You can find the book by following this link ISBN 87-7776-004-2

"I am told to go to a compounding pharmacist and have them prepare Coenzyme Q-10 into a cream and then apply everyday to the liver area and the liver tumors will shrink quite dramatically. Sounds stupid to me, but Dr. claims this is working on 100% of the patients they are treating. The cream I order is called CO-ENZQ10/VANICRE 200MG GM CREAM" Compounding pharmacies can be located at http://www.angelfire.com/fl/endohystnhrt/pharmacy.html

Folic Acid/Folate

-Folic acid or folate is important for cells and tissues that rapidly divide and is involved in the synthesis, repair, and functioning of DNA. Deficiency of folate may result in damage to the DNA that may lead to cancer. Oral or intravenous folic acid supplementation may correct, however, lifelong support may be required if poorly absorbed or loss of small intestines.

Symptoms of folic acid deficiency are sore mouth and tongue, tiredness, headaches, pallor.

Dietary suggestions: green leafy vegetables and citrus fruits (juice, juice, juice...)

Kombucha tea

Please investigate Kombucha tea at the website below --- it claims to be a digestive tonic, as well as an all-around immune enhancer. Actually it is the symbiosis of a live culture, much like what is found in yogurt, when mixed with yeast and fed a diet of sweetened black or green tea. The result is a filtered sparkling beverage, Kombucha tea, that holds the health properties of the cultures, as well as a slight alcohol content (less than 0.5%) from the fermentation. Essential nutrients are then present after fermentation such as active enzymes, viable probiotics, amino acids, antioxidants and polyphenols.

Kombucha supports digestion, metabolism, immune system, appetite control, weight control, liver function, body alkalinity, anti-aging, cell integrity and healthy skin and hair.

http://www.kombuchatea.co.uk/

Anti-oxidants

The following abstract indicates no clear evidence that antioxidants interfere with traditional chemotherapy.

Cancer Treat Rev. 2007 Mar 14; [Epub ahead of print]

Impact of antioxidant supplementation on chemotherapeutic efficacy: A systematic review of the evidence from randomized controlled trials. Block KI, Koch AC, Mead MN,Tothy PK, Newman RA, Gyllenhaal C.

Institute for Integrative Cancer Research and Education, 1800 Sherman Avenue, Suite 350, Evanston, IL 60201, United States; Program for Collaborative Research in the Pharmaceutical Sciences, University of Illinois at Chicago, 833 South Wood Street Room 539, Chicago, IL 60612, United States.

  • PURPOSE: Much debate has arisen about whether antioxidant supplementation alters the efficacy of cancer chemotherapy. Some have argued that antioxidants scavenge the reactive oxygen species integral to the activity of certain chemotherapy drugs, thereby diminishing treatment efficacy. Others suggest antioxidants may mitigate toxicity and thus allow for uninterrupted treatment schedules and a reduced need for lowering chemotherapy doses. The objective of this study is to systematically review the literature in order to compile results from randomized trials that evaluate concurrent use of antioxidants with chemotherapy.
  • DESIGN: MEDLINE, Cochrane, CinAhl, AMED, AltHealthWatch and EMBASE databases were searched. Only randomized, controlled clinical trials that reported survival and/or tumor response were included in the final tally. The literature searches wereperformed in duplicate following a standardized protocol. No meta-analysis was performed due to heterogeneity of tumor types and treatment protocols used in trials that met the inclusion criteria.
  • RESULTS: Of 845 articles considered, 19 trials met the inclusion criteria. Antioxidants evaluated were: glutathione (7), melatonin (4), vitamin A (2), an antioxidant mixture (2), vitamin C (1), N-acetylcysteine (1), vitamin E (1) and ellagic acid (1). Subjects of most studies had advanced or relapsed disease.
  • CONCLUSION: None of the trials reported evidence of significant decreases in efficacy from antioxidant supplementation during chemotherapy. Many of the studies indicated that antioxidant supplementation resulted in either increased survival times, increased tumor responses, or both, as well as fewer toxicities than controls; however, lack of adequate statistical power was a consistent limitation. Large, well-designed studies of antioxidant supplementation concurrent with chemotherapy are warranted. PMID 17367938

I [and who are you??] still say they are irrelevant to targeted therapies like Gleevec or Sutent. Note the conclusions of the abstract -- the people who took them felt better, may have lived longer.


Members' advice regarding various nutritional cures/treatments for GIST, include:

  • Red Wine Polyphenols http://jn.nutrition.org/cgi/content/full/132/9/2814
  • Fuciodan complex compound derived from seaweed.
  • Inositol Hexaphosphate - other common name(s): IP6, IP-6, Insp6, inositol, phytic acid, phytate,myo-inositol hexaphosphate. Scientific/medicalname(s):inositol-1,2,3,4,5,6-hexakisphosphate
  • Selenium
  • CoQ10
  • Olive Leaf aka: Oleuropein
  • Vitamin E

Other substances which down-regulate NFkB, an item associated with inflammation and resistance to cell death, are curcumin (must be dissolved in oil to be absorbed well -- you can break open a capsule and dissolve in a few drops of olive oil -- or dissolve in peanut butter)and resveratrol, a naturally occuring phenolic fungicide in grapes (and wine). See curcumin under Nutrition page also.


Multi-vitamins

I was at my oncologist yesterday and I asked about supplements. She said if you want to take a multiple vitamin, that is ok, but you can overdo it by taking too many supplements, therefore, she does not recommend that course of action.

Other Personal Experiences

After being diagnosed with GIST 11/03, my sister-in-law hooked me up with a rogue researcher who created a nasty tasting recipe for me to drink everyday. I have been using the brew since then, and am still NED. Here it is!

In 1/4 cup FATTY coconut milk mix 1/2 tbls palmitic acid 1000 mg EGCG Ultra (70%) Bring to flash boil, cool, then add 25 mg Paw Paw Cell-Reg

The only difficult ingredient to find is the palmitic acid. I get mine from Stephen Martin, who is the guy who developed this recipe for me. EGCG is from drhoffman.com and Paw Paw is from Nature's Sunshine. He says if I get a recurrence, he will add more ingredients, and make me use it more than once a day.

So, the question is - would I do just as well without it? The answer is NO - because it gave me some peace of mind at the beginning just knowing I was DOING something. Mentally, it helps - physically, who knows? Deanne


I have had good results with supplements suggested by a naturopath. I have been on continual dosage of 37.5 mg Sutent since 09/06. My first two scans ( at 3 month intervals) showed shrinkage of my tumor. My third scan showed no change from previous scan. My side effects are nowhere near as severe as the ones I have read about in the digest. My bloodwork shows that the Sutent is wreaking havoc, but for the most part I can'tcomplain.

The supplements designed to work on apoptosis and white blood cell function through my naturopath are as follows:

IP-6: White blood cell immune stimulant that increases function, esp. cell mediated immunity.

Glutathione precursors: major internal antioxidant. As you make energy you move electrons around to make energy. On the most efficient system, you still lost about 10% of that electron energy, which causes oxidative damage. Glutathione is also used in most of the major detox pathways. You can't eat glutathione because it gets broken down in stomach. You use the precursors and hope your liver makes the glutathione out of the precursors. The precursors has alpha lipoic acid and NAC, the precursors you use to make the amino acid into glutathione.

Melatonin: Is normally used for sleep at the dosage of 1-3mg/night. At the dosage of 20mg/day it's a signal to cells to undergo apoptosis (programmed cell death). Do a literature search on "melatonin and apoptosis" at this address http://www.ncbi.nlm.nih.gov You can't use melatonin for blood cell cancers.

He also has me on B-complex, iron & vitamin C, and calcium supplements.

TO the nurse: Sometime natural treatments are OK with most chemo such as IP-6 (for immune) or L-Glutamine for gut lining. But lots of treatments will interfere with the chemo or the patient's treatments, so you have to be careful.

Related Links:

nitric oxide