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Dehydration almost killed me. Been taking it since 12/28/23. Have to stop it for a while. Had part of a five cm adenomal polyp recected yesterday. Need to get stomach acid low. Drug needs stomach acid for assimilation. I'm not even sure it's working for me. Have a CT scan Wednesday. That should tell me the real story. Remember desmoids are strange animals. They wax and wain at will. Possible study is totally wrong and desmoids studied were just being desmoids. SURPRISE! They don't surprise me. They just drive me nuts.
It sounds like you are on it from what you posted and you side effects are mild. If true I am glad for you.
It almost killed me with dehydration. My kidneys are weak for most of my life. I went on Ogsiveo at the end of 23 and within 11 days I am rushed to the hospital for extreme dehydration. I was taking 300mg per day. They tried 200, still to much. They had to drop me down to 50mg per day. They only have 100mg tablets which should not be broken. I was taking them 100mg 4 times per week. Have to stop them for a few weeks because of medical reasons. Watch out for signs of dehydration.
What do you all take for it? And the side effects are mild too.
PANTOPRAZOLE is good. I love it. We are good friends.
Hey @A MyDesmoidTumorTeam Member! Tagging some members who may be able to provide some insight @MyDesmoidTumorTeam users...
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