Pancreatic Cancer Group: Introduce yourself and connect with others

I 'm a 76, very fit male who was diagnosed with neuro endocrine tumors(NETs) in the tail of my pancreas and some in one area of my liver. Diagnosed in Jan.2025. Am receiving 120mg. Lanreotude for 3months and then new CT scan. No symptoms as such but I have a severe body rash and bouts of severe itching especially at night. Apparently paraneoplastic effect from tumors. Anyone else experience this?

@mcoplien, it's always frightening when CA19-9 shows higher levels. Have you had further testing? Any news?

8/10/2023 - stage II found on a routine PET scan for something else - asymptomatic
6 month of chemo - FOLFIRINOX 12 treatments - last couple reduced.
Surgery 2/23/24 - removed 1/2 pancreas, Spleen and 26 lymphnodes -
No sign of cancer for the last 4 scans. (a year) But now CA 19-9 is now elevated. (186)

My Dad was diagnosed with Pancreatic Cancer June 2024

@jenkins Weight loss generally happens and it may go on for 2 to 3 months but if you read the posts here, many regain their weight in time. My husband lost 8 - 10 kgs post-surgery and in the first months of chemotherapy. It was probably in the 3rd month after start of chemo that he started putting back on weight.
If your husband does not feel like eating, that is the tough part. Look for protein drinks and shakes - there are fruit protein drinks and shakes that you can make with oat milk (regular milk may cause nausea). Also check with oncologist, what else can help with the nausea - onco may need to test out which drugs works best to stop the nausea for your husband.
I have been looking after my husband since Dec 2023; I know how hard it is for you. You are his support so you need to stay strong.

Hi. I’m the caregiver for my husband who was diagnosed with pancreatic cancer. We were told he doesn’t qualify for surgery due to where the mass is located and wrap around his spleen. His best chance was for him to go to extensive chemo. He started his first chemo but left loosing 20+ lbs in just weeks. The nausea dint help. He has not eating for over 7 days. He ended in the hospital for IV to hydrate him. We are back home. He is eating a little, but suffer with stomach pain and very low energy. Is this normal? How soon will he start feeling better? It’s been 10 days. Any feedback will help. I feel hopeless .

Hi
Thank you for writing that. I have high hopes and send you healthy thoughts that all goes well. Its fantastic that you and your team are so on top of everything. It makes such a big difference.
I hope to hear more about your next chapter.
With best wishes.
Beth

We have been watching for 3 years. 3 cysts on head. Body and tail shot from a severe case of acute necrotizing pancreatitis. Still making insulin but not making digestive enzymes so have been on Creon for 3 years.

January this year EUS performed with one biopsy on cyst that had nodule. Results came back positive. Since it is early hopeful it is contained. Opted for Total Pancreatotomy since the rest of my pancreas is not working hardly at all and to eliminate a home or more cancerous lesions in the future.

I am prior lung cancer that they also found early. Lung cancer does not move to pancreas, but the reverse can happen. Last March I had to have a second lung surgery to remove all the plural effusion inflammation that was being caused by the pancreas fluid. (Every case is different but make sure they are explaining why they are still good with waiting.) I waited for the 3 years and truly just now need surgery.

Good luck and let me know how your journey progresses.

All tests are back. No tumor markers. The largest cyst which is on the tail is 2.3cm. There are others on tail and one in middle. Surgeon wants to follow up with mri in 6 mos. Says spleen has lots of blood supply with pancreas and thats the reason it is frequently removed with the tail.
I had EUS FIRST FOLLOWED BY MRI AND OF COURSEW BOTH HAD COORDINATING BLOOD WORK. I HAVE KRAF MUTATION.
(Sorry for caps!).
It’s all precancerous i guess so he chose 6 mo follow up vs 12 mo the radiologist recommended.
I feel like we are just waiting. Which is a bit nerve-wracking. What caused you to make the decision to have surgery.
I have great confidence in the surgeon.

Removal of the spleen depends the type of surgery you have which depends on where the IPMN is. Whipple for the head of the pancreas does not take the spleen.

What was the latest test the surgeon is waiting on?

Have you had an EUS to compare to the MRCP.

I have an SB- IPMN that they followed for 3 years. EUS in 2022 and again last month. Just now having surgery.

T