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

We seem to go from home few weeks then back to hospital. He just got out yesterday. His body is a clot making machine. Eliquis was failing. He now has an IVC filter and I give him 100 mg lovenox twice a day. Due to heart failure he takes 20 mg Lasix every other day and 12.5 mg of metoprolol. His surgery has been postponed until September or October. He also is now getting octreotide 30 every 3 weeks ( twice a month). Since functioning blasted tumor causing every symptom known just trying to get control. His glucose is under control at least! I’ve gotten that thing down from 9.8 to 7.1. Goal is below 7. He is intermediate risk for surgery but need that primary tumor out. His oncologist has been talking with NIH. We see oncologist now twice a month and have appointment 26, August. We are plugging forward, I will never give up till he tells me to do so. My research is now carried in a file folder, big one! I’m grateful to have ability to access these statical results. It is hopeful.

I so appreciate your update, @llr9f. My thoughts and best wishes are with you and your son. He is so fortunate to have you on his side. Your medical background and your love and dedication make you a remarkable care giver. Keep sharing, I am here to be a listening ear.

I am so sorry to hear this. As you may well know, pancreatic cancer of the Exocrine glands (digestive) and pNET of the endocrine glands are totally different although in the same organ.

I have pNET at 1.1 cm that is stable right now.

I just wanted you to know you are being heard and prayers are going up. Please keep us posted. I know this must be so difficult.

I am aware. My husband died from pancreatic cancer (adenocarcinoma) the aggressive pdac . Our son has pnet specifically glucagonoma pnet. At present he is experiencing glucagonoma syndrome. He has ALL the symptoms. It is horrible. His Ki67 is < 3%(grade1) but his stage is 4 as it has spread to LN in neck area and chest. It is not in his liver. I have yet to find anyone with this. There are no clinical trials regarding this tumor. Yes, I’ve searched. There is a trial opened for two years that just started but is for NEts. I can get him in that but first his best option is to remove tumor via surgery. I have all confidence in his team. His oncologist is very knowledgeable and gives us hope. His surgeon is excellent! I rarely saw any and I mean any complications from his work. Somehow we will get through this and power on. Thank you for prayers it is appreciated.

Please join other popular Facebook groups that may be able to help! Once you join, you can use the search feature 🔎to see other’s experiences.
Neuroendocrine Cancer,
Neuroendocrine Cancer-Ronny Allen’s Group.
Dr. Liu’s Neuroendocrine Zebras, Neuroendocrine Cancer Awareness Network.
These are all very active groups, excellent resources!

Actually you don’t need Facebook. I am an 18 year survivor and I lead a monthly support group via The Seena Magowitz Foundation. We meet monthly on the last Wednesday. I recommend surgery as soon as possible! If operable.

Update on my son…. It’s actually a lot but will cut to chase. He had surgery last Wednesday 10/2/25. Splenectomy, the vessel involved, partial pancreatectomy, cholecystectomy, debulking of involved LN as well as areas around the stomach. It was a hard surgery we are still in the STICU. Hopefully will go to stepdown next few days. He does have an octretide drip going . Spiking fevers heart rate elevated but due to removal of tumor hence the drip. I don’t leave his side. the goal to give him a better quality of life,decrease the tumor burden and live as long as possible. Which all feel is possible now. This is now a chronic “disease “ ! This damn pancreatic glucagonoma

@llr9f What an amazing report! I can see that his medical team has accomplished a great deal to decrease the tumor burden. Please let me know how he is doing and when he goes to a step-down unit. My prayers are with you both!

You are doing an amazing job! Your son is so lucky to have an advocate like you in his life. So many patients do not. You are making a difference! We are all rooting for you and your son. Godspeed to you!

@llr9f , Godspeed to your son's recovery!
I had same surgery +hysterectomy on Feb.1'23. "Still around and kicking"- traveled 3 times to Europe; had our son's wedding in Italy! Hugs to you and him! There is still life after this diagnosis!💜🦓