CommunitiesGastrointestinal Stromal TumorsHow do others cope with GIST treatment fears and side effects?

How do others cope with GIST treatment fears and side effects?

MQ

Community Member

2 months ago

Hi I was diagnosed in July 2015 with rectal GIST. They thought it was a fatty benign tumor and because of the large size they left some tumor behind. At pathology it was GIST exon 11 very high risk. I received 400mg of Gleevec every day until now and I have to take it for life I am complete response and never had a recurrance I have developed a liver and pancreatic problem, had to stop Gleevec for one month while undergoing many scans, procedures and blood tests. My liver enzyme are back to normal for now, I am back on Gleevec. The outcome of all the scans are inconclusive Common bileduxt 16 mm and pankreatic duct in head 6 mm. On my EUS there was nothing found, but because of the enlarged ducts I have to be observed with a scan every 6 month. I also have a tongue displasia that is treated for years with many biopsies and surgery. This is my Story. I am always very scared and thankful at the same time that I have life to this day and hopefully more in the future. I am also happy to have found this place where I can share my cancer. I am very thankful Manuela

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2 comments
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accepted answer

Accepted Answer

Thank you for sharing your journey and for being part of this community. Managing treatment fears and side effects is something many members here understand deeply, and finding ways to cope often involves connecting with others who face similar challenges, staying informed about your condition, and working closely with your medical team when concerns arise. Your gratitude and resilience shine through your words, and this community is here to provide support as you navigate the ongoing monitoring and treatment process.

3+ patients found this helpful

AC

Community Member

2 months ago

Welcome and I take 400mg of Gleevec daily for the past year and a half, and just had a visit with my oncologist yesterday. She said my tumors are on the liver and pancreas too but they are stable. I've decided not to live life scared and to continue doing the things I love. You should too as this too shall pass. You be encouraged and take 1 day at a time; GOD bless you 🙏

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CA

Community Member

2 months ago

Thank you for sharing your journey and for being part of this community. Managing treatment fears and side effects is something many members here understand deeply, and finding ways to cope often involves connecting with others who face similar challenges, staying informed about your condition, and working closely with your medical team when concerns arise. Your gratitude and resilience shine through your words, and this community is here to provide support as you navigate the ongoing monitoring and treatment process.

1

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