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Neuroendocrine Tumors (NETs) | Last Active: 4 days ago | Replies (50)
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Fortunately, I don't have those issues currently. It is hard for me to tell what challenges I had initially from CAPTEM because I was very sick. I didn't like food for about 3 years, lost well over 100 pounds, had ascites and cachexia, and had endured diarrhea and vomiting for a long time. I started exercising after 4 cycles. After about 6 cycles, my doctor lowered my daily capecitabine intake to 2000mg from 2500mg. Most of my lingering issues, some of which were similar to yours, started to subside. How many milligrams are you taking daily? What does a normal cycle look like for you? How much time in between cycles do you take?
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The dose you're taking sounded very high to me. Then I realized the med I am on is actually cabozantinib, not capecitabine. I usually go by its brand name, Cabometyx so I confused the medication names.
With this med I take 40 mg once a day. Standard seems to be 60 mg, but many patients find that too hard to maintain. No cycles, just once a day continuously.
Glad that your exercise program is working. I know I like to get out and bike ride if the heat isn't too bad (my heat tolerance is way down this year). Sorry if I created any confusion.