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.

I really appreciate the update, @llr9f. Your son is in good hands. I really appreciate the care you are providing him. I'm glad that you are in a hospital environment that is familiar to you as well as the hospital staff knowing you, as a valued former staff member.

Please know that my thoughts (and prayers) are with you and your son. I hope you will post updates as you can.

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 will made mistake it was his CGa that was 257 dropped to 87 which is normal! So far he has now had only 2 injection. No one can really explain the rhythm or reason. I know all these tumors are rare! His is 1 in 20 million. I’ve been reading as much as I can find as well as from other countries. All research articles I’ve printed. I’m hopeful the surgeon can remove the damn thing!