Has cabozantinib (Cabometyx) stopped working for anyone?

Posted by zacharycat @zacharycat, May 11 12:33pm

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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zacharycat | @zacharycat | 6 days ago

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.

Turkey, Volunteer Mentor | @tomrennie | 6 days ago

In reply to @zacharycat "@tomrennie I don’t know too much yet. They scheduled a teaching meeting for Monday morning." + (show)

@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.

zacharycat | @zacharycat | Jul 30 8:35pm

In reply to @tomrennie "@zacharycat I was pretty sick, when I started taking it. I have functional NETs and was..." + (show)

@tomrennie I don’t know too much yet. They scheduled a teaching meeting for Monday morning.

Turkey, Volunteer Mentor | @tomrennie | Jul 30 5:47pm

In reply to @zacharycat "@tomrennie That's good to hear. Were there many side effects, and did they get worse over..." + (show)

@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?

zacharycat | @zacharycat | Jul 30 11:58am

In reply to @tomrennie "@zacharycat I took CAPTEM four years ago. It was my first treatment. It shrunk everything. I..." + (show)

@tomrennie That's good to hear. Were there many side effects, and did they get worse over time?

Turkey, Volunteer Mentor | @tomrennie | Jul 30 8:17am

In reply to @zacharycat "No, I have not. Watching a video on it now. We also discussed Everolimus but the..." + (show)

@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?

zacharycat | @zacharycat | Jul 29 6:40pm

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.

Turkey, Volunteer Mentor | @tomrennie | Jul 29 4:37pm

In reply to @zacharycat "@tomrennie Thanks. The doctor said we stop taking cabozantinib and probably start on CAPTEM. He is..." + (show)

@zacharycat Have you ever taken CAPTEM before?

zacharycat | @zacharycat | Jul 29 2:55pm

In reply to @tomrennie "@zacharycat Good luck with what the doctor says. Keep us posted please?" + (show)

@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.