1. < Neuroendocrine Tumors (NETs)

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

Posted by llr9f @llr9f, Apr 19 12:49pm

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 | 6 days ago

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.

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Teresa, Volunteer Mentor | @hopeful33250 | 5 days ago
In reply to @llr9f "Thanks for all the comments regarding my son. His medical care is 24-7 sometimes sitting is..." + (show)
@llr9f

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.

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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.

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