GIST Support Wiki

 
Symptom Relief

Complementary treatments may help relieve some symptoms, any sensations or changes in bodily function that are experienced by a patient which are associated with a particular disease. However, BE SURE to tell your doctor about all symptoms as they may indicate changes in your medical condition that may require changes in your treatment.


Contents

FOR GENERAL SYMPTOMS

Emotional Freedom Technique

Bruce Lipton, PhD, Author of "The Biology of Belief", states "EFT is a simple, powerful process that can profoundly influence gene activity, health and behavior." EFT, or Emotional Freedom Technique, is a process of tapping specified acupressure points on yourself to reduce the impact of emotional and physical issues. To receive the free newsletter and manual from Gary Craig, an ordained minister, go to http://www.emofree.com/downloadeftmanual.asp Videos at http://www.youtube.com/watch?v=jYT9VpYuuEo will help you understand and learn this valuable technique. Also see http://www.mercola.com/forms/eftcourse.htm for his step by step teaching guide.

Medical Marijuana

Medical marijuana has benefited me in a number of ways related to Gleevec side effects. If youGoogle "medical marijuana," you can find the states that have legalized medical use of marijuana. Also you can google "marinol" and find out quite a bit about that. (It is not marijuana; it is a derivative which has some of the benefits and side effects, but not all of either.)

I believe it is generally true that people who have tried both find marinol not as effective or easy to use as medical marijuana. If you do not want to smoke, you can buy a vaporizer which allows you to inhale only a smokeless vapor containing the essence of the drug without smoke. You can also bake with it and eat it. The benefit of smoking is that it is simple and you can titrate it pretty easily (i.e., determine how much you need and get that amount and no more at any given time). It is harder to titrate if you eat it or take marinol.

How I use it to help with Gleevec side effects. I always have some nausea (and diarrhea) for a few hours in the morning after taking Gleevec. I eat food, and use saltines and candied ginger, which often does the trick. If it does not and I want or need to get out of the house to get to work, I take a small hit or two of medical marijuana from my pipe, and that immediately relieves any residual nausea, without noticeable side effects. I function just fine in the world having done this.

I have found marijuana particularly helpful for night time leg cramps. These were extremely severe and horribly painful until I started prescription quinine, which helped a lot. But the FDA pulled it. The ivory soap in the sheets helped, but not enough. Now I routinely ingest a baked marijuana cookie or muffin, which I bake myself with marijuana I buy legally, in the evening, and I generally sleep well through the night with only minimal, not terribly painful, leg cramps.

There is nothing to be ashamed or embarrassed about. If your doctor judges you badly for exploring use of this harmless drug to relieve your discomfort, pain and suffering, you might consider whether you are getting the best care and advice from that doctor. My oncologist at Kaiser Permanente includes "marijuana" in the list of prescriptions and supplements that I use, without batting an eye.

Virtually all knowledgeable medical professionals and many religious and other organizations that care about us, the patients, agree that the federal government's classification of medical marijuana as a schedule 1 drug (outlawed) is medically and morally unsupportable.

If you are interested, be sure to at least explore the question with your doctors. If you can improve the quality of your life without harming yourself and others, why not go for it?


FOR SWELLING AROUND EYES

See Eye Puffiness (Periorbital Edema).

FOR PAIN RELIEF

http://www.palmbeachdailynews.com/news/content/news/DanaFarber0219.html - This article describes how Dana Farber is using integrative therapies, formerly known as alternative medicine, to improve cancer survivors' quality of life. "Acupuncture can actually reduce chemotherapy-induced nausea and vomiting. Acupuncture now can reduce cancer-related pain," states Dr. David Rosenthal, director of the Zakim Center for Integrative Therapies, citing random clinical trials.


FOR HAND & FOOT SORES

See our page Sore Feet and Hands.


FOR MOUTH SORES

Canker sores are small ulcer craters in the lining of the mouth that are often painful and very sensitive (aka aphthous ulcers): Peroxyl or xylitol mouthwash, orajel topical products.

Treatment(by prescription only): Lidex ointment compounded 50/50 in Orabase, Dexamethasone Elixir, aphthasol, Magic Swizzle (this compounded medication contains magnesium and aluminum hydroxides, diphenhydramine hydrochloride and lidocaine in a liquid base). Here is the link for a product for oral mucositis from chemotherapy: http://www.gelclair.com/

My doctor encouraged me to try taking Glucosamine powder - 2 tsp of powder with 8 oz juice/4x a day, the first four days of my on-cycle. We are currently traveling so I haven't been as faithful in taking it. I am not sure yet if it works but it's supposed to have helped patients on chemo therapy who develop mouth sores. You might want to give it a try. I gargle a prescription mouthwash called BMX that helps numb my mouth for a few minutes so I can eat.

ORALSOOTH is a unique dietary supplement formulated from all natural herbs for soothing canker sores and tooth pain. www.novahealthproducts.com

VitaMyr is a toothpaste that is a little more expensive, but worth it!! It is good for anyone that is sensitive to regular toothpaste. They also make a mouthwash. I ahve checked with my onco and there is no problem with Gleevec and the grapeseed extracts and cloves in it. It is very soothing and gentle.


NEEM: It's been around for centuries but the properties of Neem oil in lotion and especially toothpaste are really exciting. I saw a recent Dr. Oz show where the skin healing properties of Neem were discussed. Neem is a tree, the seeds, leaves and bark are pressed much like olives to produce the Neem oil so highly prized for its medicinal and cosmetic values.

So, I went to the local health food store to find it and it was a bit more expensive than regular toothpastes but the results are pretty amazing. For years I've had issues with sensitive gums, they bleed and are very tender. I bought the Neem oil, too, and I mixed it with food grade mineral oil (a few drops of each) Now, a week later skin rash is almost gone. I've been brushing with the Neem toothpaste twice a day and my gums have quit bleeding and I no longer have the sensitivity.

Warning! Women who are pregnant, or, want to become pregnant, or who are breastfeeding should not use Neem oil.


FOR TASTE CHANGES (Dysgeusia)

  • Maintain good oral hygiene - brush your teeth before and after each meal.
  • Choose and prepare foods that look and smell good to you.
  • Eat small, frequent meals.
  • Do not eat 1-2 hours before chemotherapy and up to 3 hours after therapy.
  • Use plastic utensils if food tastes like metal.
  • Eat mints (or sugar-free mints), chew gum (or sugar-free gum) or chew ice to mask the bitter or metallic taste.
  • Substitute poultry, eggs, fish, peanut butter, beans and dairy products for red meats.
  • Marinate meats in sweet fruit juices, wines, salad dressing, barbeque sauce, or sweet and sour sauces.
  • Flavor foods with herbs, spices, sugar, lemon, and tasty sauces.
  • Chilled or frozen food may be more acceptable than warm or hot food.
  • Try tart foods such as oranges or lemonade (this may be painful if mouth sores are present).
  • Avoid cigarette smoking.
  • Eliminate bad odors.
  • Eat in pleasant surroundings to better manage taste changes.
  • Increase your fluid intake.

NOTE: If your taste changes have caused you to stop eating and you have lost 5 or more pounds, you should inform your health care provider


FOR LOW RED BLOOD CELL COUNT (Anemia)

If your serum iron is low, you can eat more foods high in iron which include red meat. Iron absorption from your intestines is improved by Vitamin C. So include some citrus fruits or broccoli at the same time as your iron foods. For more info on food for anemia, see the National Institute of Health link at: http://ods.od.nih.gov/factsheets/iron.asp

A diagnosis of pernicious anemia may be treated with vitamin B12. The vitamin B12 has to be administered by injection because people with pernicious anemia do not have adequate protein intrinsic factor (or an effective form of intrinsic factor) and so cannot absorb vitamin B12 taken by mouth.

Anemia is a condition where red blood cells or RBC do not provide adequate oxygen to body tissues. Evidence is found in your bloodwork showing low hemocrit (number of red blood cells and size - % of RBC found in whole blood) and elevated hemoglobin (protein in RBC that carried oxygen) with elevated MCV (large sized RBC).

There are many causes of anemia. Gleevec, as well as abdominal surgery involving the stomach and small intestines, seems to create a loss of intrinsic factor, the substance needed to absorb vitamin B12. Some listmates receive vitamin B12 injections (which can also be taken intranasally) and this seems to most improve anemia conditions temporarily.

Deficiencies of Vitamin B12, folic acid (folate) and iron can exacerbate anemic conditions. Consuming certain foods daily may gradually improve and maintain RBC. Vitamin C also assists in increasing absorption and is essential in hemocrit production. Here are further suggestions and more info on these deficiencies and their symptoms:

-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.

-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...)

-Iron is an essential component of hemoglobin, the oxygen carrying pigment of blood. Deficiencies in iron may indicate internal bleeding, and symptoms are 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).

Dietary suggestions: 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.

Interesting how sore tongue or mouth are symptoms of B12, folate and iron deficiencies... maybe this is key to improving this horrible symptom so many gisters seem to share.

Sources included Medline Plus, Wikipedia, and www.vegsoc.org/info/b12.html


FOR LOW WHITE BLOOD CELL COUNT (Neutropenia)

  • A blood test called a white blood cell differential shows what proportion of your white blood cells are made up of each of the different types of cells. Although values may vary from lab to lab, a normal neutrophil count will be approximately 47 to 77 percent. On a lab report, this will usually be listed as SEGS or polys (polymorphonucleocytes or PMN).
  • In people with low platelets, the skin may have black and blue spots (ecchymosis) or tiny freckle-like red spots (petechiae). There may be a tendency toward bruising easily and nose bleeds. The gums may bleed more easily when you brush your teeth. In some cases, the spleen may become enlarged or there may be gastrointestinal blood loss.
  • A number of nutrients are needed for proper bone marrow function. A potent B complex formula or multivitamin should be included as there are a number of different B vitamins critical to proper bone marrow function. Note that B-12 and folic acid should always be given together since taking folic acid alone could prevent the blood cell changes that might otherwise indicate B-12 deficiency. Doses of B-12 (1,000 mcg given daily via pills, or one to several times weekly through prescription nasal gel or injections) and folic acid (800 mcg daily via pills) may be useful, even when tests don’t indicate obvious deficiencies. The injections or nasal gel forms of B-12 bypass absorption problems that may be present.
  • Therapy with vitamin C may help normalize platelets in some people. In one Scandinavian study, a dose of 10,000 mg daily resulted in normalization of platelet levels and restoration of normal homeostasis in most of those given the vitamin. When the vitamin C was discontinued, platelet levels decreased again to undesirable levels. When the vitamin was begun again, the platelets again went back up to normal. This study was small and no followup research was done, but for those with low platelets, a trial of vitamin C therapy might be worthwhile.
  • Doing everything possible to help prevent mitochondrial damage may help to prevent (or prevent worsening of) and possibly even reverse (at least partially) neutropenia. The most important nutrients for this would be a broad spectrum of antioxidants, the B complex, and the amino acid L-carnitine.
  • The most important antioxidants would include vitamin E (800 to 2,000 IU daily), vitamin C (1,000 to 2,000 mg, three times daily with meals), bioflavonoid complex (1 capsule with each meal), carotenoid complex (1 capsule with each meal), selenium (400 to 600 mcg daily, total from all sources, including your multiple), N-acetyl-cysteine (500 mg, three times daily), coenzyme Q-10 (100 to 500 mg daily), and alpha-lipoic acid (200 to 400 mg, three times daily).
  • Also crucially important is the amino acid carnitine. Carnitine is available in two forms: L-carnitine and L-acetyl-carnitine. There are both over-the-counter and prescription forms of L-carnitine. The brand name of the prescription form is Carnitor. L-carnitine should be taken in doses of 1,000 to 2000 mg, three times per day. L-acetyl-carnitine (available over the counter) should be taken in doses of 500 to 1,000 mg, twice daily. Note that L-acetyl-carnitine will release four times the amount of free carnitine into the bloodstream, compared to an equivalent dose of plain L-carnitine. Thus, the need for higher doses of L-carnitine to achieve the same effect. If insurance or Medicaid coverage for Carnitor is available, this could provide substantial savings.
  • Alkylglycerols from shark liver oil have provided some positive results increasing white blood cell counts in Scandinavian studies. A minimum of 1,000mg three times per day up to 2000mg three times per day may be beneficial.
  • Practitioners of Traditional Chinese Medicine (TCM) have long used codonopsis as a primary herb in the treatment of white blood cell decreases. Some naturopathic physicians report good results using a TCM product called Marrow Plus, a combination of codonopsis and supporting herbs. It seems to work well for drug-induced neutropenia from cancer chemotherapies. The Marrow Plus is often helpful even when the drugs are continued long-term. The standard dose is three to four capsules, three to four times daily.

www.healthinfotranslations.com


FOR NAUSEA, VOMITING & DIZZINESS

Back during the Gleevec trials, I think the instructions told people not to lie down for some period of time (maybe 30-60 minutes?) after taking Gleevec. It is a local stomach irritant, so the idea is to not let it sit on one spot (also the reason for lots of water with it). So you might be less likely to get the heartburn if you took it 30-60 minutes before bedtime rather than right at bedtime.

  • Many GSI members report that taking Gleevec with a meal or food greatly reduces nausea. Some patients have reported that out of medical necessity they needed to spread the Gleevec pills over the course of the day in order to avoid severe nausea and vomiting.

I tried various nausea meds, but seemed like eventually each one made me feel "jumpy" and I had trouble sleeping. So now I take nausea medicine at 2 in the afternoon, Gleevec before bed, and some nights a Pepcid too. Seems like without it I'm always up about 3am with terrible heartburn. Finding that combination changed everything for me. I now can eat good, feel good, can take vitamins again, and all that gives me more energy.

  • Meclizine is given by many doctors still for dizziness and it also helps with nausea. It used to be prescription under the trade name of Antivert, but is available over the counter now in many motion sickness products like Dramanine, Bonine etc... I still take it when I get vertigo attacks.

Aside from Zofran I also found Kytril very effective. It used to be available only through IV but its now comes in tablet form too. It's more expensive than Zofran but it gave me instant relief with nausea.

My daughter was prescribed Marinol (synthetic THC, I believe), to help her with nausea. If she really wants to eat something and not have it come back up on her, she takes the Marinol. It does make her feel strange, she says, but works well on the nausea.


Putting Evidence Into Practice: Evidence-Based Interventions to Prevent, Manage, and Treat Chemotherapy-Induced Nausea and Vomiting by Janelle M. Tipton et al http://www.ons.org/publications/journals/CJON/Volume11/Issue1/pdf/110169.pdf


http://www.cancernausea.com/symptom_relief/symptom_relief_alter.asp suggests alternative therapies which can relieve nausea and vomiting by:

  • encouraging relaxation
  • increasing feelings of control
  • reducing thoughts of helplessness

Alternative therapies may include:

  • Acupressure for nausea can be done immediately when the symptom occurs. With your fingernail, press the indentation above your upper lip, midpoint between the bottom of your nose and upper lip and hold. Also massage the points located on the inside of either wrist, measure three fingers from your wrist to find the point.
  • Self-Hypnosis is a mental state in which you create a feeling of total body relaxation. Becoming more aware of your breath coming in through your nose and exiting your mouth (with the exhalation being slightly longer) will help you relax.
  • Progressive Muscle Relaxation teaches you to relax by gradually tensing and relaxing different muscles. As with anything, practice makes perfect! For your benefit, please follow this progressive relaxation exercise as often as possible: http://www.lessons4living.com/how.htm
  • Guided Imagery uses all your senses — hearing, sight, taste, smell, and touch — to "mentally relocate" you to a relaxing environment of your choice.
  • Cognitive Distraction such as music (especially with headphones), video games, and other distractions may focus your attention away from nausea and vomiting.

FOR FATIGUE

See our Fatigue page.


TO LOWER LIVER ENZYMES

Two things you can do to bring down liver enzymes are: 1) take prednisone 2) change your diet to drastically reduce omega-6 fats (corn oil) AND INCREASE omega-3 fats (flax oil, fish oil). This really does work, as there are papers tracking pre- and post-operative patients with versus without "immunonutrition" that has omega-3 fatty acids plus arginine and some other stuff. Those taking the omega-3 had less elevation of liver enzymes post-surgery and the values returned to normal faster. Several people have had good results from drinking pomegranate juice to lower their liver enzymes. It has been amazing for some; also olive leaf extract and milk thistle can be beneficial.


Milk thistle decreases the activity of CYP3A4 which is the major enzyme responsible for the metabolism of Gleevec and Sutent. DON'T take milk thistle while on these drugs and check with your doctor if on other drugs.


I guess the cause of high liver enzymes may be different. In my case it believed to be Autoimmune Hepatitis caused by Gleevec. Pomegranate juice or lower Gleevec dose DID NOT help me. Short course of Prednisone helped to remove the problem permanently. Several GIST doctors acknowledged that this is the standard practice today to treat these cases.


FOR STUFFY NOSE

Gleevec can effect your mast cells-which have something to do with histamines; which can in turn effect your sinuses. I was speaking to another patient and her sinusitis got so bad (led to coughing all the time, feeling like she has allergies constantly etc...) that her doctor lowered her Gleevec. And she said it made a great improvement.

I did a de-tox program for two full weeks about 4 months ago, and cutting out all dairy significantly helped my sinusitis. My husband claimed I didn't snore anymore! So, there are dietary and other tools to compensate for the side effects!!! Also, my breathe right strips that I sleep with on my nose at night help.


FOR CONSTIPATION

from the Graedons' People's Pharmacy website... ...we described Power Pudding for constipation! We wrote that nurses seem to know about this recipe that calls for 1 cup of bran, 1 cup of applesauce and 3/4 cup of prune juice. It is our understanding that you take one or two tablespoons daily washed down with lots of water. The glop, which is quite stiff, should be kept refrigerated. Anyone who would like more details on this special remedy, our 10 tips to fight constipation and a dynamite bran muffin recipe may wish to order the Graedons' Guide to Constipation. Please send $2 in check or money order with a long (no. 10) stamped (63 cents), self-addressed envelope: Graedons' People's Pharmacy, No. GG-30, P. O. Box 52027, Durham, NC 27717-2027. It can also be downloaded for $2 from the Website: www.peoplespharmacy.com.

Products from your local health food store that will gently move your bowels:


FOR MUSCLE CRAMPS

See our page Muscle Cramps


FOR WATER RETENTION/SWELLING

Natural diuretics can aid in removal of excess fluids from the body. Moderation is the key even in the case of natural diuretics.

  • Green tea is a natural diuretic food that has been in use for centuries in

China. Consumption of cranberry juice can aid in removal of excess fluid retention. Apple cider vinegar exhibits natural diuretic properties and in addition maintains the potassium levels. It can be added to the salad dressing. Dandelion is often used as a natural diuretic. Nettle has natural diuretic properties that facilitate good cleansing. Dandelion leaf tea aids in detoxification and has a beneficial effect on those suffering from cystitis and urinary tract infections. Fennel has carminative and diuretic properties and is frequently used in seasoning food.

My husband has been on Gleevec for four weeks and has eye swelling and I started giving him green tea, cranberry juice, cucumber and celery. All are natural diuretics. It worked great.

Diuretic food

  • Natural foods with high water content such as watermelons and cucumbers help

increase urination and better flushing out of toxins. Cucumbers are rich in sulfur and silicon that stimulate the kidneys into better removal of uric acid. Watercress and artichokes are also natural diuretic foods.

  • Asparagus contains asparigine - a chemical alkaloid that boosts kidney

performance, thereby improving waste removal from the body.

  • Brussel Spouts help in stimulating the kidneys and pancreas. This helps in

better cleansing of cells.

  • Beets are natural diuretic foods that attack floating body fats and fatty

deposits.

  • Oats contain silica - a natural diuretic.
  • Cabbage is known to aid breakage of fatty deposits, especially around the

abdominal region.

  • Carrots are a rich source of carotene that speeds the metabolic rate of the

body and hastens removal of fat deposits and waste.

  • Lettuce aids better metabolism and flushing of toxins.
  • Tomatoes are rich in Vitamin C that aid the metabolism and release of water

from the kidney to flush out waste.

  • Other than the other excellent properties that Garlic possesses, it is a

natural diuretic food that aids breakage of fat. Horseradish, raw onions and radish speed up your metabolism.

When my husband couldn't take diuretics he was able to get some relief from turmeric. It's a spice, and is available in pill form. It's also a good anti-inflammatory agent. Do you know how your albumin is? When my husband was so swollen it was because his protein and albumin levels were low. Have you checked your labs to see what is low? Your potassium level is very important, as well as calcium, magnesium, protein and albumin. All these should be reported on a blood test. You should also check your red count - the hematocrit and hemoglobin.


THYROID ISSUES

"Gleevec can change the rate in which the liver metabolizes circulating thyroid hormones. Gleevec could indirectly skew the hormonal axis of the thyroid (hypothalamus-pituitary-thyroid-peripheral tissues), causing hypothyroidism."

To those who are interested in how Gleevec effects thyroid levels, I found this interesting article, entitled: Imatinib induces hypothyroidism in patients receiving levothyroxine, http://www.nature.com/clpt/journal/v78/n4/abs/clpt2005513a.html

It concludes that people who have had their thyroid removed Gleevec makes it so they will need more thyroid replacement hormone. However, those patients who still had their thyroids (and were receiving thyroid hormones, remained "eurothyroid" which means that the levels were still normal.

My endocrinologist always says to me "what is normal for you may not be normal for the average American, who the labs are normed on." As I've mentioned before I am "eurothyroid," but need a very high dose of thyroid hormones to have no symptoms.


MARINA: Repeating what I think that I remember from an ASCO presentation in 2009, Sutent affects thyroid function in a way that is different than Gleevec.

Gleevec affects the metabolism of thyroid hormones (the body's own or synthetic) but not the thyroid gland itself.

Sutent seems to interfere with the thyroid tissue itself (if you have a thyroid), perhaps by Sutent's inhibition of a protein called Ret which is important in thyroid function.

Gleevec's effects on thyroid hormones would be reversible when you stop Gleevec. Sutent's effect, however, could possibly be irreversible.


Julie:

You can watch the talk Marina mentioned, the 2009 ASCO talk by Jerome M. Hershman MD, of the VA in Los Angeles and UCLA School of Medicine, at this link:

http://www.asco.org/ASCOv2/MultiMedia/Virtual+Meeting?&vmview=vm_session_presentations_view&confID=65&sessionID=2957

Most of his talk is about sunitinib damage to the thyroid. About imatinib he has one slide and indicates there is increased clearance of thyroid hormones when a person is taking imatinib.