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Has cabozantinib (Cabometyx) stopped working for anyone?
Been taking Cabozantinib for a year now, and have heard that it tends to lose effectiveness on cancer progression over time.
Take it for stage IV pancreatic insulinoma with liver metastasis. The last MRI looked good, but am having more low glucose alerts than previously. Wondered if anyone else had been taking the drug and what the next treatment would be if they had to stop?
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@tomrennie Thanks. The doctor said we stop taking cabozantinib and probably start on CAPTEM. He is also going to speak to my surgeon about more liver ablation and also check to see if more PRRT is an option.
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1 Reaction@zacharycat Have you ever taken CAPTEM before?
No, I have not. Watching a video on it now. We also discussed Everolimus but the doctor said it had lower response rates than CAPTEM with patients who stopped cabozanitnib.
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1 Reaction@zacharycat I took CAPTEM four years ago. It was my first treatment. It shrunk everything. I have been on just capecitabine since. Do you have any questions?
@tomrennie That's good to hear. Were there many side effects, and did they get worse over time?
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1 Reaction@zacharycat I was pretty sick, when I started taking it. I have functional NETs and was already feeling a lot of symptoms. I can attribute some additional nausea, fatigue, diarrhea, vomiting, and some other things to the CAPTEM. I had/still have a two week cycle of capecitabine. You add the temozolomide on the last five days for the CAPTEM. Those last five days can be a challenge at first. It took my body a few months to adapt. Things got easier over time. The amount of capecitabine that you take makes a difference. So does the time off in between cycles. Everyone's body tolerates the treatment differently. Do you know any of the specifics about your cycles yet?
@tomrennie I don’t know too much yet. They scheduled a teaching meeting for Monday morning.
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1 Reaction@zacharycat OK. Do you have any questions prepared for your meeting on Monday? You want to learn as much as possible during that meeting. If I don't write my questions down and take them with me, I always forget to ask something.
Yes, were there any problems getting treatment approved? my insurance company said that temozolomide is not covered and that I should contact my physician for alternative treatment.
I can also file an appeal. Always too much stuff to deal with.
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1 Reaction@zacharycat I did not have any problems getting my treatment approved including temozolomide. I also don't recall other CAPTEM users on Connect having any issues either. If someone did, I hope that they can provide some suggestions. I would suggest filing an appeal. Sorry to hear that you are having insurance challenges. They are never fun.