Pancreatic Cancer Group: Introduce yourself and connect with others

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.

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

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 .

@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.

My Dad was diagnosed with Pancreatic Cancer June 2024

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)

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

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?

My CA19-9 just creeps up little by little. 33, 51, 55, and now 82. I’m on Irintoticen chemo which is the last one available for me. What happens next? They have me on fluids 3 times a week. I feel good but it’s a lot of driving back and forth.

I was diagnosed with pancreatic cancer 1/26/24. Stage 3. I had 2 chemo treatments and 33 radiations treatments. I Had a MRI and CT scan within the past 4 weeks which indicated the tumor has shrunk and showed no active activity.
However my tumor markers from February to March went from 399 to 500. If the tumor has shrunk why are my tumor markers climbing? I see the Dr on 3/24. I had genetic testing and was told it was environmental.