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Anyone have experience with cabozantinib (Cabometyx)?
I am interested in hearing people’s experiences with cabozantinib. I was diagnosed January 2020, grade 3, well-differentiated, unknown primary with tumors in liver, pancreas, lungs, bones, and multiple glands. I’ve been through CAPTEM, FOLFIRINOX, FOLFIRI, and most recently PRRT (I only had 3 rounds because I had progression). I am now switching to cabozantinib and would love to hear others’ experiences.
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An update to my post in May where I started Cabo 40mg. In December the tumor in my liver had grown. I started alternating Cabo 40mg and Cabo 60mg. The side effects are much worse. Mouth sores/blisters, diarrhea and cramps. I have had low Potassium issues. Two weeks ago I went to 60mg daily. I go back to Moffitt for scans in March. Prayers for stability and shrinkage.
I pray all of you will find a place in treatment that works for your body.
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1 Reaction@gesmone1 Wish you all the best. 60mg is tough to take both my doctors said. I know 40 is bad enough.
Previously I had hepatic artery embolization and radio frequency ablation.
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