Is everyone with pNETs on creon?

I have a pNET. I have never taken creon. I was on CAPTEM for 12 months and now just CAP for 3 months. My tumor started off at 8x6cm. It was 4x2cm on my last scan 2 months ago.

Thank you for the reply.
Did you have similar symptoms before diagnosis?
That’s great news that you have shrinkage Hope all is good with you

Very similar symptoms. Stomach pain, constant diarrhea, and always feeling sick that got progressively worse over 3 years. I lost over 100lbs. Due to covid, it was hard to get tested and diagnosed. My revolving door of primary care doctors didn't help. When I finally got diagnosed, I was in bad shape. Not only did I have a pnet, I also had innumerable lesions on my liver. The lesions are almost gone and my pnet has shrunk. When it was small enough to allow my pancreas to function after four months of treatment, everything started getting slowly better.

So did you have surgery? My pNET is about that size (8x6) but I have been without symptoms, or very slight. They want to cut it out after chemo. Is that your path?

Surgery is not in the plan. The plan is to stay on capecitabine as long as it is working. I am trying to avoid Surgery if possible.

Hello @familything and welcome to the NETs support group on Mayo Connect. I'm so glad that you joined here. This is a great forum to learn about the experiences of others as well as ask questions and get support for yourself.

It sounds as if this is a recent diagnosis. Many of us, like you, had no symptoms before our diagnosis. What test or scan revealed your PNet? Have you begun chemo yet?

Hello. Diagnosed almost 2 years ago. Had one year of uncontrollable diarrhea. Diagnosed with IBS at first. Finally had a CT scan that showed a 2cm tumor on the pancreas with multiple lesions in the liver. Was put on Creon at that time
Treatment has been monthly Lanreotide injections and just recently moved to PRRT treatment. I guess chemo is down the road if needed.
Wonder why our treatment is different than yours. Everyone seems so different with this type of cancer
I like being on here to learn from everyone else. Thank you

I'm glad that you are learning from everyone here! Oten your treatment depends on the oncologist you are seeing. Are you currently seeing a NET specialist? It is also important to remember that each person's NET journey is different. Much of the treatment depends on the location and the staging of the NET.

Having at least one consultation with a NET specialist is very important. General oncologists don't have the same kind of experience as specialists do.
Mayo Clinic has NET specialists at all three of their locations. Here is a link with appointment information if you would like a consultation (either in-person or virtual). http://mayocl.in/1mtmR63. If an appointment with Mayo is not possible, here is a list of NET specialists worldwide, https://www.carcinoid.org/for-patients/treatment/find-a-doctor/

How are you feeling now? Have your symptoms been relieved with the Creon and monthly Lanreotide injections?

Just clarifying. It’s my significant other that has the diagnosis. Boyfriend. But I feel like we are a bit old to say that. Lol
When he was first diagnosed we asked to go to Mayo but when I called they said they didn’t take Blue Cross Blue Shield. So we went to a different option. No it’s not a specialist but I would really like to get a specialist involved. He just recently got Medicare and I see Mayo Clinic does accept that
Here recently he has been feeling pretty good. Best he has felt in a very long time. Hoping the PRRT is working
I very much want him to see a specialist. It’s just a little hard to convince him. We come from a very rural area and just going to the big city every month is very stressful for him
Thank you for the Mayo consultation link and also the link with the list of specialist. Hoping we can see one at Mayo

I am on Creon. It was prescribed to me after surgery. I had a very large tumor encompassing pancreas and spleen. It was not clear if the pNET was primary or some lymph node that grew big ( 20x16 cm). Had surgery on Feb 1, 2023. It is stage 4 with multiple liver lesions. Have been on Lanreotide since March. So far it is stable, no new growth. 2/3 of my pancreas was removed, so I needed enzymes (Creon), also my gallbladder was removed as Lanreotide causes stones formation.
After the first few injections I have been tolerating Somatuline ( Lanreotide) well, only a day or two uncomfortable post injection.