Any one with Neuroendocrine tumors getting the shot once a month?

Great News!!

That is wonderful news, @bluebelle. I appreciate you sharing your results. As I recall, you had a surgical resection and monthly injections. Is that correct?

Partial remission is a wonderful place to be. When will you have your next follow up scan?

Yes, I had a surgical resection upon my diagnosis, and I still have the monthly injection which will be continued indefinitely. I started Lutathera last July and ended it in December ‘24 so my PET scan was 6 months out from that. I will have another CT scan in 4 months and then PET scan 2 months later. Thanks so much!!!

Sherry, is the same Dr ordering both CT and PET scans? I ask because I have CT/PETs done at the same time. It's my understanding this is done to improve accuracy. It seems redundant to have a CT and then 2 months later have the PET? Just interesting that your Dr(s) do it different.

Yes, it’s the same doctor:) I’m really not sure if I’ll have the CT this time but instead just do the PET at 6 months. He has done a CT a few times and then followed with a PET to obtain more accuracy a couple months later. This last PET was to get a new baseline after the Lutathera treatments.

Yes it did feel good:) It has given me that little push to keep going! ❤️

Yes I have had two ct and now I am scheduled for the pet next week I like it better because you don’t have to drink that nasty drink

Is anyone on the xermelo 250 mg tablets daily and how much is it helping and the best way to take it before a meal or after a meal and what else do you take with it that will help a lot with the diarrhea

I one more question is anyone experiencing bitter taste with eating food and what are you using to help?

My husband has been having Lanriotide injections every 28 days for 2 1/2 years. He is Stage 4 with tumors throughout his skull and body. He had 1 tumor removed 30 years ago when there were no medication options. He has minimal side effects. The first week after injection, he isn't very hungry and has a hard time eating. However, he does everything he wants to do -- golfing daily, 120 pushup/day, 30 minutes on a stationary bike. Really the only issue is not likely most food and not being hungry. He takes enzymes to help with digestion which definitely makes a difference.