Hi everyone, I am hoping someone has thoughts to share with me. I was dx'd in February, started Gleevec 400mg and had unbelieveable results. PCRU at 4 months! However, also severe irritable bowel syndrome by 5 months! It started as gas, bloating, diarrhea and just got worse the longer I took Gleevec. Finally, it left me doubled up in pain any time I even tried to eat. Please understand I am not a lightweight...I am allergic to pain meds and local anesthetics, have done a root canal with no anesthetic at all! The IBS was severe. The gastro doc is certain it is the Gleevec. Immodium didn't relieve the diarrhea any more, nor did other meds relieve pain. Only pain relief was to not eat at all! Didn't matter what foods I ate or didn't or what time of day I took the Gleevec (with food and a full glass of water). Have been off of Gleevec for a week now and still working on getting bowels back under control, but thankfully the pain and bloating are gone. They want to start me on Tasigna next week and I am terrified. I already have a heart arrhythmia and the Gleevec has already elongated my QT...still within tolerance, but close. I am scared of dying from long QT, (with an arrhythmia already, how would I know I was having a problem) and barring that I am also scared of other side effects I am hearing about like migraine headaches, high blood sugar, rash....I am the sole support of four, so stopping work is not an option for me unless I would also like to stop eating and having a roof over my head! I want to live, but at what price? Has anyone else had such severe effects from Gleevec and found a way to improve them?? I really don't want to change if I don't have to.
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