Has cabozantinib (Cabometyx) stopped working for anyone?

@zacharycat Nausea a dizzy can happen. I sit down as soon as I can, if I am dizzy. Sounds like you have a good supply of support meds to start with. Were you given any guidance on when to take them?

@tomrennie They sent an anti-diarrhea medicine and some skin cream. At the pharmacy I picked up prochloroperazine to be taken as needed for nausea and andansetron to be taken when I start the temodar (days 10-15).
Last night I felt some nausea and quite dizzy, almost like the room was spinning. This morning though not bad at all so far.

That's a pretty standard dose, although it's a little stronger than the dose I started with. I took three 500 mg capecitabine tablets in the morning and two 500 mg tablets in the evening.

One thing that can be confusing is that Xeloda is the brand name for capecitabine. Capecitabine is an oral prodrug of 5-FU (5-fluorouracil)—your body converts it into 5-FU. 5-FU, also called fluorouracil, is one of the older and most widely used chemotherapy drugs and has been used in cancer treatment for decades.

Besides the nausea, fatigue, diarrhea, and vomiting I mentioned, I would occasionally get mouth sores and problems with my hands and feet.

For my hands and feet, I use vitamin E oil along with 60% urea cream, which has helped me manage the dryness and irritation.

One thing I learned is to report symptoms early rather than trying to tough them out. Hand-foot syndrome can become quite painful, and significant diarrhea, vomiting, or mouth sores can sometimes mean the oncologist needs to adjust the dose or temporarily stop treatment.

Did your oncology team explain the potential side effects and give you suggestions for managing them? If not, I would definitely ask. There are things that can be done to make capecitabine more tolerable.

@zacharycat I weighed a lot less than that when I first started. I agree with you on weight loss and fatigue. What nausea medication were you sent? How are you feeling after taking a few capecitabine?

I wonder why the dose difference. I thought it depends on size. I weigh about 155-160. Weight has been dropping recently which could be a sign of disease progression along with fatigue.
The package they sent includes some nausea medication which I won’t need, or at least not often. Took three capecitabine tablets about a half hour ago.

@zacharycat That's a pretty standard dose, but a little stronger than when I started. I took three 500 mg capecitabine tablets in the morning and two in the evening. Other than the nausea, fatigue, diarrhea, and vomiting that I already mentioned, I sometimes got mouth sores and dry skin especially on my hands and feet. Did they tell you about any potential side effects? Did they give you any suggestions to help with them?

@tomrennie 500 mg tablets, 3 in the morning, 3 in the evening.

@zacharycat I am glad that the meds were approved. That has to be a relief? The med that you are taking one pill twice a day, the capecitabine, is each pill 500 milligrams?

@tomrennie Met the pharmacist to day and it was approved. I have a $45 copay but no other problems.
The cycle is one of the meds twice a day for 14 days, with the other added once a day for the last 5. Then 14 days of no meds. Harder to remember than what i've been taking.

@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.