GIST Support Wiki

 
Relief for General Side Effects of any GIST Drug

NUTRITIONAL DRINK RECIPES FOR APPETITE LOSS OR WEIGHT LOSS ISSUES

I don't like the bought drinks so when I lose y appetite or nausea strikes, I turn to homemade food. You can buy protein powder in a health food store and blend it with other supplements along with a banana, frozen strawberries, or other fruit to make your own Smoothie. Vary the ingredients depending on the mood.

Also, I find French toast with fresh fruit is a nutritious meal. Usually I can eat fruit no matter what state I'm in, and French toast, made with egg and milk, has both carbs and protein.

When I'm really sick, old fashioned baked custard from the Fanny Farmer recipe. It's milk and eggs, a little sugar, sprinkled with nutmeg or cinnamon, baked in a water bath. It slides down easily and is edible when nothing else is. It's also portable if baked in individual custard cups, as is the homemade Smoothie in a thermos or travel mug.


I'd add that if it is uncomfortable or impossible to eat solid food, these home made drinks can be just the thing. Personally, I separate them in to two categories, i.e. fruit and vegetable drinks.

You can either blend them or juice them. Juicing removes the pulp and fiber, so if the person is having issues with diarrhea, blending may be the better choice as all the bulk remains.

I also have diverticulitis, so I blend, rather than juice. In fact, I don't own a juicer.

Green juice can provide a full days supply of vegetables along with all the attending nutrients, vitamins, complex carbs and fiber that you'd need.

I just made one yesterday afternoon from:

3-4 large kale leaves stripped from stalks (or 1 c packed spinach) 6-8 baby carrots Nub of peeled fresh ginger 2 stalks of celery chopped into 2-3" lengths 1-2 tomatoes, cored (or use canned). 6 or so ice cubes 4-6 ounces of water

Just blend it all up into a nutritious drink and enjoy. It tasted pretty good.

There are lots of recipes online for blended and/or juiced drinks. You may need to experiment a bit to find 3-4 that you like. Having a variety to choose from will help break up the monotony.

Great fall back are the juice drinks, which are universally yummy. I had one last night which was:

1 banana 4-5 fresh strawberries 1-2 apples, cored and chopped into 1/4's with skin intact 1 scoop whey, vanilla protein powder (26 grams protein) 6-8 ice cubes 6-8 ounces of water

Costco sells the protein powder in jugs or bags and it is a great source of protein, particularly if you can't eat meat. I use it as a supplement on days I lift weights. Don't overdue it with this as excess must be processed through the liver. It can also be constipating if you don't get enough fiber, which is another reason I blend rather than juice.


Every day I make a protein shake...(sometimes 2).....whey isolate protein powder, powdered greens supplement, a liquid vitamin mineral supplement and a liquid calcium supplement .. I use water or coconut juice as the base .. sometimes I add a spoonful of almond butter.....

I also juice an assortment of vegetables every day


I use a fruit flavored drink called Enlive - It is not as nutritional as Ensure but it has some calories which is what I needed.


My husband couldn't stand Boost or Ensure, but he likes Orgain. You can get it through amazon.com. Also, V-8 juice is high in potassium. Is he taking potassium pills? There's one called Micro-K, which is much easier on the GI system than the huge pills they usually prescribe. I also make smoothies with whey powder and yogurt and strawberries or peaches.



FOOT AND HAND SORES


My daughter was on Sutent a few years ago and had a terrible problem with foot and hand sores so her doctor ordered a special made cream for her. She is now on Votrient, and is experiencing some problems with her feet again and we just reordered the prescription again, however the old pharmacy is out of business and we will be getting it from another pharmacy who is going to make it as more of a clear substance than the original one.

It has 3 medicines in it which are: Gabapentin, Amitriptyline, and Lidocaine. It worked very well for her before and we are hoping this new one will be just as effective. The name of the pharmacy is Hometown Apothecary and is one of the few in this area that still make some of their own compounds up. Their phone number is 724-891-7383 and it is located in New Brighton, PA 15066. I asked them and they do send special prescriptions to people in other areas, so would be able to service you wherever you are.

I say, give it a try, it worked for her before and is working now, but they cautioned me about it being absorbed by the body through the feet and would definitely want to know what other drugs you are taking before making it up for you. Because of the Votrient, they are reducing the amount of Lidocaine because it can cause shortness of breath and possible heart issues. So be very careful how many times a day you apply it and how much you use.


Try soaking your feet in Epsom Salts, hands too if they are an issue. I had bad sores on both my hands and feet during some cycles of Regorafinib. I used hemorroid ointment on my hands when I played golf. Sounds strange but it helped so I could grip the club.


USING EXERCISE TO FIGHT SIDE EFFECTS

The side effects for me have been minimal but lately I'm starting to see a direct correlation between my level of exercise and felt side effects.

Specifically, the more I exercise the more energy I have and the more "normal" I feel. For example, last week I was lazy for a few days and didn't do my normal exercise routine. During that down time, my energy level decreased and I would get that "chemo" feeling for an hour or two after taking my Gleevec. One morning I awoke to find my face a little puffy and swollen.

Next day, I walked 6 miles, did 30 minutes on the Elliptical and lifted weights and once again felt 100%. No more puffy face and my energy level was back up to normal.

The one side effect I am fighting is weight gain. Don't know whether it is water retention or slower metabolism, but I find it takes quite a bit more exercise and diet control to maintain my weight. Unfortunately, my appetite is still strong, so the urge to eat is still there.

Every one of us is different and I know that we don't all respond the same way to drug treatments or to other stimuli, but I' thought I'd share my experience.