Looking for information on CAPTEM treatment

Hello @bnjncrew

Starting a new chemotherapy med can certainly raise questions. I would like to invite @tomrennie to this discussion. He has been treated with CAPTEM and he can share with you some of his experiences with this drug.

Was the 5Fu the first line of treatment for your husband?

@bnjncrew

I was diagnosed with pNET with metastasis to the liver on 8/22/2022. I have completed 10 straight cycles of CAPTEM since. Each cycle is 28 days. Initially, food had a metallic taste. I switched to plastic utensils. It just seemed to go away. Around my 7th cycle, I started getting neuropathy on the top of my feet. I have a surgically repaired back that might be causing it as well. I take gabapentin for it. My biggest issues were nausea and vomiting. It took about three cycles of trial and error to finally control them with meds. I still get some nausea, but it is easily tolerated. What other questions do you have?

Hello,
They tried two embolizations (last Summer) first but these were not effective. Thank you for referring.

Does the nausea start with the “CAP” portion or only with the “TEM”? His doctor has prescribed Ondansetron for possible nausea. He had terrible neuropathy on the 5FU treatment and metallic taste. It was effective though. Unfortunately the results didn't last. The plastic utensils are interesting. We will try that. Is your NET Insulinoma? My husbands started in the Pancreas and metastasized to his liver. Discovered May 2022

For me, the nausea started with the CAP and got worse when I added the TEM. Ondansetron did not work for me. My NET is not an insulinoma.

My husband has been on CAP and TEM and also a monthly injection of lanreotide for the past nine months. He was diagnosed in October 2022 with inoperable neuroendocrine tumor cancer, with a large tumor on his pancreas and inumerable spots on his liver, also on his spine and some lymph nodes. He takes olanzapine 5 mg for his nausea from the 5 days on TEM. His cancer has shrunk 40% so far. He experienced a metallic taste the first few months, and it disappeared on its own. He feels great.

This is good to know. I thank you. My husband started 5 fu last September and did 6 months before he had to stop because of inability to eat and neuropathy. His shrank over 50 % but have started growing again so they are trying the Cap Tem. We are only 2 days in. It is good to know what to expect. I am happy to hear your husband is doing well on this. Thank you.

God bless you both. Hoping he gets good results. Jim’s cancer has shrunk 40% on average.

My mistake. Ondansetron did work for me. I know it as Zofran. Olanzapine did not work for me.

Oh thank you ..Yes Zofran is what she called it. The other treatment he had September to February was Folfox/5Fu. Doing well so far with the “CAP” only effect is numbness in palms. We are early on.