Amira Posted October 16, 2021 Share Posted October 16, 2021 (edited) Thanks! Edited November 1, 2021 by Amira Quote Link to comment Share on other sites More sharing options...
EmilyGF Posted October 16, 2021 Share Posted October 16, 2021 (edited) Yes. What do you want to know? MIL had a rare type last year. I'm so sorry this is something you need to look into. ☹️ Edited October 16, 2021 by EmilyGF Quote Link to comment Share on other sites More sharing options...
Amira Posted October 16, 2021 Author Share Posted October 16, 2021 (edited) Thanks! Edited November 1, 2021 by Amira Quote Link to comment Share on other sites More sharing options...
EmilyGF Posted October 16, 2021 Share Posted October 16, 2021 MIL was in a more rural place and her doctor only saw a handful of people per year with GIST. He put her on medication that made her sick (she doesn't have a high tolerance for medication) but that was supposed to be highly effective. She was hospitalized for dehydration and they found that her tumor hadn't shrunk; if anything, it was larger. DH paid $750 to get a large research hospital to give a second opinion on her case. It turned out that her doctor had done the genetic testing wrong (need to test the tumor!!!) and that MIL's wasn't going to respond the medications he had put her on. Hers was inoperable, as it was about the size of a baseball and was intertwined with her organs. Hers turned out to be a really rare type that is untreatable, as was easily discernible when the genetic testing was done correctly. She died within six weeks of proper diagnosis. In retrospect, DH would have gotten the second opinion ASAP because most doctors don't handle this cancer regularly. It was a lot easier to get a second opinion than we thought, and the doctor was really helpful and fast. MIL's cancer treatment was really just one error after another. unfortunately, and her cancer wasn't the normal form of GIST. Sorry for this really negative post. PM me if you want to know where we got the second opinion. Emily 1 Quote Link to comment Share on other sites More sharing options...
Amira Posted October 16, 2021 Author Share Posted October 16, 2021 (edited) Oh, I’m so sorry to hear about your MIL’s passing, especially when the medical treatment was so inept. Thank you for sharing. Edited November 1, 2021 by Amira 1 Quote Link to comment Share on other sites More sharing options...
Pawz4me Posted October 16, 2021 Share Posted October 16, 2021 You might want to poke around this website. The people there are so knowledgeable and have helped me keep my sanity WRT DH's cancer. The format is a bit different from what I'm used to on most message boards (in part because they work really hard to protect privacy)--you have to follow topics or tags to see posts (not like here where you can scroll down the main forum page and see all the forums and browse through threads). I see they do have a tag for GIST, so maybe you can find some useful info. 1 Quote Link to comment Share on other sites More sharing options...
EKS Posted October 16, 2021 Share Posted October 16, 2021 My husband's uncle had one. It was inoperable and 13 cm in its longest dimension. He ended up going on a clinical trial that shrank the tumor somewhat and then kept it from growing. He was able to keep working for quite a while (a few years) on treatment, but he aged rapidly during that time, and ended up having to retire due to what we think was dementia. Both his siblings, his mother, and his grandmother all had dementia, some early onset, so it wasn't necessarily caused by the drug. He ended up dying at age 72 of what we think was a heart attack, but since he died alone and there was no autopsy, no one really knows. Quote Link to comment Share on other sites More sharing options...
Amira Posted October 16, 2021 Author Share Posted October 16, 2021 2 hours ago, EKS said: My husband's uncle had one. It was inoperable and 13 cm in its longest dimension. He ended up going on a clinical trial that shrank the tumor somewhat and then kept it from growing. He was able to keep working for quite a while (a few years) on treatment, but he aged rapidly during that time, and ended up having to retire due to what we think was dementia. Both his siblings, his mother, and his grandmother all had dementia, some early onset, so it wasn't necessarily caused by the drug. He ended up dying at age 72 of what we think was a heart attack, but since he died alone and there was no autopsy, no one really knows. Thank you, this is helpful, especially to read about more advanced stages. I’m sorry for your loss. ❤️ Quote Link to comment Share on other sites More sharing options...
Amira Posted October 16, 2021 Author Share Posted October 16, 2021 3 hours ago, Pawz4me said: You might want to poke around this website. The people there are so knowledgeable and have helped me keep my sanity WRT DH's cancer. The format is a bit different from what I'm used to on most message boards (in part because they work really hard to protect privacy)--you have to follow topics or tags to see posts (not like here where you can scroll down the main forum page and see all the forums and browse through threads). I see they do have a tag for GIST, so maybe you can find some useful info. Thank you! I’ll check this out. Quote Link to comment Share on other sites More sharing options...
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