GIST Support Wiki[edit] Personal Experiences
I am not nor have I ever been on Gleevec. But I had a total gastrectomy and I had the gagging and vomitting about 2-3 months after surgery. It became so bad that I couldn't keep anything down. My potassium became so low that I was falling. I became very, very weak. I was dehydrated. I Eventually fell down our basement stairs and went to the ER to check for any breaks and that's when they found the potassium levels to be "deathly low".(their words not mine). They tried every med you can think of for nausea, ulcers, acid reflux, anxiety etc. Eventually with IV fluids and potassium, I regained my strength and ability to eat and keep things down. I know mine was strictly due to the gastrectomy. Hope this helps some.
In 2001 my husband had a total gastrectomy, which I think may be easier to live with at first than a partial, but I wanted to share a few things he experienced and the different things we tried. He also felt awful for about the first 6 months, and had a lot of gagging when he started on Gleevec. In fact he stopped taking it for a while because of the gagging. When he started again, which was about 5 months later, he had a little gagging, but that stopped after a few months, and even initially it wasn't as bad as it was the first time he tried it. One of the problems is that your sphincter could be damaged or even non-existent - my husband's esophagus goes into his small intestine and he has frequent bile reflux so he has to sleep upright. He has aspirated bile into his lungs several times, waking up with this happening, and it can be dangerous because pneumonia can develop so quickly. Do you see a gastroenterologist or are you still only seeing your surgeon? If you don't have a gastro I really recommend that you find one. They have a different approach to how your life has changed post-gastrectomy than surgeons. A nutritionist can help too - one told me that only calcium citrate can be absorbed by the small intestine. The other kinds of calcium require stomach acid to break them down, and if you don't have a stomach, or it's smaller than normal, it can affect how much you absorb.
One thing we've found for Dave is that if his potassium is low, he has a lot more gagging and reflux, and he just feels awful. If you've had labs recently you should check your potassium level - the normal range is 3.5 to 5 - to be sure it's somewhere in the middle of that range. Potassium helps with muscles and we've noticed it really makes a difference for Dave (he has more of an absorption problem than most people because he had to have part of his small intestine removed due to a bowel obstruction). When you're feeling awful and not eating much your potassium can slip into the low range and affect how you feel and how you sleep as well as cause the gagging.
You might ask your doctor if you can take Reglan for a while - it helps promote normal peristalsis, keeping the movement of the intestinal tissues going the right way. Dave has taken phenergan at night - it stops peristalsis, but it also makes you sleepy. There are some side effects with it but he hasn't had any problems with those. If he needs it he usually only takes a quarter or a half pill.
Having a smaller stomach can result in impaired absorption of what you do eat. Has your doctor mentioned pancreatic enzymes? Some people who've had gastrectomies benefit from taking them, even if they still have their pancreas, just because of the changes in the character of the digestive system. His gastro doctor at OHSU said just the 're-plumbing' of everything can affect absorption and she always prescribes enzymes. They need to be a tablet form, not a capsule. They help break down fats so they can be absorbed more readily and can really help your nutritional status.
I have a friend who recently had gastric banding, and she's having a really rough time with all the symptoms you describe, so I think part of it is just the body adapting to all the change. She can't drink any kind of pop, can't eat sweets, can't even eat cereal or she gags and feels awful. The doctor tells her this will eventually get better.
Also see Post Gastrectomy Pain.