GIST/ Gleevac

Wendy88 · 02-29-2008, 09:23 PM

Hi!
My mother was diagnosed with GIST (a sarcoma type cancer that was found outside her lower intestine) about a year ago. She went to the hospital for an unrelated pain and they found her cancer during her MRI. Very lucky!
Anyh0w - she he had surgery and it was removed, along with 1/4th of her small intestine. About two months ago the cancer came back ina similar area, again caught very early... it didn't even light up on the PET scan. She has since started treatment with Gleevac.
Does anyone have any good stories about GISTs (i think only 4,000 people a year get diagnosed with this cancer) or good Gleevac responses? My mom has a contrast MRI coming up next week to see how she has done with the Gleevac and if the tumors are shrinking.
any good stories would be appreciated to help with my stress.
thanks!

Wendy88 · 03-01-2008, 08:40 PM

wow - so interesting to see that so few have been in contact with sarcomas (at least GIST - Gastro-Intestinal Strombal Tuumors)....or Gleevac. Almost 40 people have read my post but no one has any experience so it seems.
But as I stated in my first post, I know this type of sarcoma is rare... but to anyone who reads this who may have been diagnosed with this... it is indeed completely treatable!
again - if anyone has any input, i'd love to hear it. thanks!

abf123 · 03-08-2008, 11:13 AM

I would like to know more about what you mean by treatable. Can Gleevec make the cancer go into permanent remission? Can surgery? Thank you

Wendy88 · 03-12-2008, 02:24 AM

i believe that the doctor told my mother that for some people, surgery (if its operable) can remove the tumor and that can be it. no need for other treatments, just check ups.. other times of course, like my moms... it came back after the surgery and now she is on Gleevac, which is basically chemo in a pill.
i do think that some people do have permenant remission from the pill or surgery or both. i can look into that more to see if i am remembering this correctly. but if you are diagnosed with it, it isnt liek there arent options, even though it is a rare cancer.
I hope that answers your question.

LexLuthor77 · 10-09-2008, 01:29 AM

Hi Wendy. Hopefully you are still around on here. I was recently diagnosed with a GIST tumor on my stomach near my liver. Just like your mother, mine was found by accident after I went into the hospital with unrelated intestinal pain. It took them a year to diagnose the tumor- they originally thought it was a cyst on my liver that I repeatedly heard was "nothing to worry about."

Anyway, it was removed along with 10% of my stomach. Now I am starting with an oncologist and he is telling me I should take Gleevec. I am concerned about doing this because it is so experimental and the long-term effects aren't known. How has the medicine effected your mother? Has she had any side effects? Any recurrences of cancer?

Also, out of curiosity: does your mother have Irritable Bowel Syndrome? That is what I originally went into the hospital to look at and I've had stomach intestinal issues for about five years.

I hope to hear back from you. :-)