NETs growing despite 3 months of capecitabine and temozolomide

@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.

@briana311 I was on captem for 7 months no hair loss! Just tired a lot.

@kevinmonroemi
I didn’t have hair loss either. But a lot of tough GI issues. Ended up in ER2nd round. 3rd round I had colon spasms that knocked me over. And low blood counts and dehydrated. Despite all that “discomfort” tumors kept growing. So the drs said no point in taking cap tem.

@djchambers
I’m starting folfox this week. Maybe that will have better results with shrinking tumors. I have two grade 3 well differentiated

@kevinmonroemi thank you. Have you tried any other treatments besides CapTem? I assume tired is a side effect for all chemotherapies as well as the cancer itself. Good luck.

@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.

@tomrennie
Thank you so much for info. I think my relative is going to start with capecitabine (already completed the Folfox with very good results and symptoms were tiredness, hair thinning and some nausea but not as bad as she anticipated). Can always change to the full CapTem in future.

@briana311 You are right tired goes with everything we do. I also did not respond to the captem. I had y-90 on my liver, it worked well for 3 years now they think it might becoming more aggressive I had radiation on 1 tumor that doubled in size about 2 months ago.

@kevinmonroemi
Now the soles of my feet are peeling. I’ve been off cap/temo for several weeks.
This is one of the symptoms they warned about. I’ll tell Dr. not sure what if anything to do about it.

@djchambers It is called hand foot syndrome. It is a common side effect of capecitabine. I use Cerave Moisturizing Cream on the palms of my hands and soles of my feet a few times a day to help manage it. I also ice my hands and feet a few times a day when necessary to help with the swelling.