Son, 48 diagnosed with PNET pancreatic cancer 8cm tail & spleen

Posted by llr9f @llr9f, Apr 19, 2025

Please help, my son went to ED thought gallbladder found PNET pancreatic cancer in tail and spleen 8 cm tumor also in 4 lymph nodes behind as well as lymph nodes chest and neck. He had an EUS specific tumor is rare Somatostatinoma it is well differentiated he has had type 2 diabetes since 45 but the last 3-4 months uncontrollable now on lantus and sliding scale. He is passing fat in stool so needs creon. We talk with the oncologist Monday. Has anyone had this? The cruel joke my husband died from pancreatic cancer 9 years ago it was adenocarcinoma.

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llr9f | @llr9f | Nov 21, 2025

I haven’t been on to update as it seems like we got to the mountain but can’t get down. Nothing is easy for sure! He developed an ileus after surgery, and perforated his cecum. He had emergency surgery and now has a temporary ileostomy. Hopefully by the end of spring all will reattached. I’m not going to go into the first surgery or really the second one. He is alive and with me! He was in the ICU two weeks and in the hospital close to a month. His age has helped him! He has become septic twice we just got back from another stay. We are trudging onward. The surgeon removed 29 lymph nodes in the abdomen, 11 were involved. The surgery was more involved than I initially thought. He is still using a wheelchair for long distance walking, otherwise uses a walker. He got his first injection of ocetreotide this week, but that’s also when went back in hospital due to WBC 20,000. He is off and on antibiotics mainly due to the perf bowel episode…think poop exploding in belly as well as gas. He’s also getting 2 liters fluid once a week and has a wound vac…since had to go back in the same incision it opened. He is a strong one and we continue on this journey. I’ve told him we go down the mountain in zigzags.

EM | @elm60 | Nov 22, 2025

I am sorry to hear about all this happening. I had sepsis and 4 drains after a failed partial pancreatectomy. Even after sepsis, I was still sick and then one day after being discharged from the icu… upper belly incision exploded. That was another ostomy bag but finally felt better and asked for a hamburger on the way home!!!! Second surgery for PNET and again infection and ended up in a long term care facility for two months on TPN feeding . After that I finally got better!
It takes time but listen to your body is the key and pray a lot! 🙏💜

Teresa, Volunteer Mentor | @hopeful33250 | Nov 24, 2025

In reply to @llr9f "I haven’t been on to update as it seems like we got to the mountain but..." + (show)

@llr9f

I appreciate the update on your son. I'm sorry to hear that he has had such a difficult few months. He certainly is strong, and I'm sure that, as you said, his age has helped him! Is he home now?

llr9f | @llr9f | Nov 25, 2025

Yes, he is home! He has PT twice a week with home health nurses 3 times a week. Slowly he is improving but we take nothing for granted as antibiotics end next Friday. The last time he went off the antibiotics his WBC started climbing and it was a noticeable decline physically. I keep a record of everything in and out. We see his oncologist in two weeks, I have many questions regarding biopsy results! The tumor was actually bigger 11 cm! It involved the pancreas and as said earlier 11 of 29 lymph nodes removed in abdomen. Although it was on the spleen inside was totally clear of the Glucagonoma! But the splenic artery was encased it was removal of this that he bled out got 8 units of blood, heart rate and BP crashed so was on levophed. I nearly lost him but he is strong! It’s one day at a time for sure!! His biopsy revealed that indeed his Ki-67 is < 3%. The lymph nodes in his neck and chest are also the same. The goal to keep it that way. Thank you all for prayers, and or for good thoughts, means a lot!