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

Thanks for all the comments regarding my son. His medical care is 24-7 sometimes sitting is a respite for the brain. I was able to pull many strings and got his PET completed last Tuesday with a follow up in infusion (aka chemo clinic). He got the Octreotide injection. It has been a week. He hasn’t noticed a difference yet. The PET showed tail pancreas with Mets to retro peritoneal lymph nodes as well as Mets to lymph nodes in neck and chest. I’m not going to be specific as to exact location of lymph nodes affected. The tumor is not in the spleen but has covered it affecting in simple terms blood flow. It definitely is a functional, well differentiated, glucagonoma tumor. We still don’t have the K1-67 yet. My son’s glucose control has been “off the roof” I talk sometimes twice a week to his endocrinologist physician. As for getting a second opinion I don’t think or believe anything will change in his care. UVA does the Lutathera treatment also. I’m not special but I’m an old (retired just 15 months ago from this hospital)ICU nurse I know the deal. I hand picked his physicians. His oncologist is young from MD Anderson, his surgeon I know very well from Cleveland Clinic. I know his endocrinologist. I already have him in the palliative pain clinic and have him with a clinical psychologist. I take care of all his medication no worries for him to bother with. He wants me to drive the bus so I drive. I’m his mother I will do whatever it takes! That’s the update for now.i forgot to add these physicians are NET specialists.

We been missing in action due to more hospitalizations. We did just get a bit of good news after all of this nightmare my son has gotten every side effect from this glucagonoma PNET!! He was having severe pain and I figured it was his gallbladder. He had an outpatient scan and yes it was. Back to the ED.. another CT scan which caught the bottom of lungs and yes bilateral PE’s. I had begged the physician to put him on a blood thinner after his last admission but deaf ears! He had an echocardiogram which showed his EF at 45% with pericardial fluid, sugars insane!!! The plus part on the CT scan the 8 cm tumor on tail and spleen had decreased by 2 .1 cm! His oncologist said no explanation. He had been given one injection of the octreotide two weeks prior. I’m going with a small miracle! I also have noticed a definite cognitive decline and yes he has that awful skin condition on his face. In the meantime he was put on heparin drip and a per cutaneous drain was placed into his gallbladder. Finally home after 8 days, will now be on blood thinner rest of life. Last week he finally had a Cervical Lymph Node biopsy to obtain the Ki-67 results were shocking! I was ready for more doom and gloom it was < 3%!!!!! The next thing I get was his plasma glucagon level now 87 was 257 back in April!!! Now we see the surgeon in few weeks after getting yet again another CT scan. I think the tide is turning!!!!!

@llr9f,

It is so good to hear from you again. I'm glad that you have some good news. It is great when the tide turns. From your post, it appears the octreotide injection has been the only treatment. Is that correct?

I look forward to hearing from you again after you see the surgeon.

I am hoping someone on this site has a glucagonoma and their experience, please respond. 1 in 20 million per what I’ve read. Due to the rarity of this tumor no real long term studies! Also, because it is so rare it’s referred to as an “orphaned diagnosis” basically no money in real trials for this specific tumor. My son’s surgeon has only seen two in his career (he is from the Cleveland clinic” the oncologist is from MD Anderson and has also seen two in his career. My son will be having surgery in August to remove tail of pancreas, spleen , debulking of lymph nodes behind pancreas. He will also have his gallbladder removed as the tumor’s side effect caused issues. No cancer in gallbladder. His grade is 1 since Ki-67 is less than 3% but since it has metastasized to the lymph nodes in his neck and chest he is a stage 4. Surgery right now is the best option. This tumor side effects has also affected his heart his ejection fraction is 40-45% he just had a second echocardiogram. He was extremely physically active before this nightmare started last summer. He is on insulin sliding scale with Lantus at night. He has gotten bilateral PE’s and another clot in his right calf. He is on eliquis, takes one in morning and at night. Even though this is a teaching hospital with NETs team I feel like it’s a guessing game. Hopefully after his surgery he can get in a trial the FDA just approved. He gets octreotide 30 mg every 28 days.

I am hoping someone on this site has a glucagonoma and their experience, please respond. 1 in 20 million per what I’ve read. Due to the rarity of this tumor no real long term studies! Also, because it is so rare it’s referred to as an “orphaned diagnosis” basically no money in real trials for this specific tumor. My son’s surgeon has only seen two in his career (he is from the Cleveland clinic” the oncologist is from MD Anderson and has also seen two in his career. My son will be having surgery in August to remove tail of pancreas, spleen , debulking of lymph nodes behind pancreas. He will also have his gallbladder removed as the tumor’s side effect caused issues. No cancer in gallbladder. His grade is 1 since Ki-67 is less than 3% but since it has metastasized to the lymph nodes in his neck and chest he is a stage 4. Surgery right now is the best option. This tumor side effects has also affected his heart his ejection fraction is 40-45% he just had a second echocardiogram. He was extremely physically active before this nightmare started last summer. He is on insulin sliding scale with Lantus at night. He has gotten bilateral PE’s and another clot in his right calf. He is on eliquis, takes one in morning and at night. Even though this is a teaching hospital with NETs team I feel like it’s a guessing game. Hopefully after his surgery he can get in a trial the FDA just approved. He gets octreotide 30 mg every 28 days.

I am sorry to hear of this continued struggle, @llr9f. I'm sure you are looking forward to the surgery providing some relief. Is he outpatient at this time or still hospitalized?

We are home at present. This tumor also gives him a type of brain fog, almost like dementia. I finally have his glucose under control but on massive doses. It truly is a horrible tumor!