Connect
← Return to NETs growing despite 3 months of capecitabine and temozolomide
Discussion
NETs growing despite 3 months of capecitabine and temozolomide
Neuroendocrine Tumors (NETs) | Last Active: Mar 21 2:05pm | Replies (37)Comment receiving replies
@djchambers
Can anyone provide side effects they experienced from CAPTEM treatment? I was told complete hair loss from Temozolomide drug. And, has anyone just used Capecitabine drug alone without the Temozolomide drug?
I have a family member with Grade 3 pNET diagnosed June 2025, metastases to liver. Completed 12 rounds of Folfox (some neuropathy in fingers and feet and hair thinning). Most recent MRI, CT and PET scans showed very positive response to the Folfox but of course trying to keep things under control.
Replies to "@djchambers Can anyone provide side effects they experienced from CAPTEM treatment? I was told complete hair..."
@briana311 I was on CAPTEM for 13 cycles. It reduced the sizes of my pnet and liver lesions in about half. I have been on a reduced dosage of capecitabine since for about 2.5 years. Everything is still stable. I was very sick when I started. I didn't experience hair loss. I did experience nausea, vomiting, diarrhea, fatigue, dry skin, cold sweats, and body aches primarily. But, I was already dealing with them. It is hard to tell what was from the original cancer sickness or the captem. There are ways to manage these, but it takes a little trial and error to figure out what works for each person. I feel very fortunate that it has worked for me and any side effects were tolerable.
Connect
@briana311 I was on captem for 7 months no hair loss! Just tired a lot.