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Son, 48 diagnosed with PNET pancreatic cancer 8cm tail & spleen
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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Jason Starr is the NET Specialist at Mayo Clinic Jacksonville. He will not disappoint!
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2 ReactionsAnother update on son:
Functional tumor
Glucagonoma tumor
Well differentiate
Cga 252
Pancreatic polypeptide 162 (normal)
Glucagon Lvl 4210
Waiting on stupid insurance to approve pet scan,
Nothing in liver just tail of pancreas and spleen as well as 4 lymph nodes in area with ? Mets to lymph nodes chest and neck.
He has the hormone symptoms heart rate over 100 to 130, severe diabetes on lantus and sliding scale insulin, skin rash on face past 3 years all connected. His pet scan pushed to 5/20 then immediately to have the injection in his buttocks for symptom relief .
Insurance unfortunately is the hold up as of today it’s been 4 weeks! Does anyone have this type of tumor? It’s very rare from what I’ve been reading. We still don’t have stage or ki-67 yet. Waiting for scan!!!
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1 ReactionAll forms of nets are still pretty rare but more cases are being diagnosed all the time with improved awareness and screening. Is there a reason for the delay in starting octrotide or lanreotide already to control the symptoms or is that part of the insurance hold up as well? That should be a very quick approval as it has been standard of care for decades.
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2 ReactionsIf he starts the injection now apparently it will push out the pet scan even further.
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2 ReactionsI have functioning gastrinomas the lanreotide helped my symptom control significantly and I started right after my Petscan. My primary is in the pancreas with liver metastasis. Hopefully you get in soon
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2 ReactionsI'm glad to know that there is a plan for his treatment, @llr9f.
I look forward to hearing from you again. Will you post again and let me know how he is doing with the injections and the plan for the PET scan?
If he's getting a Pet Dotatate scan, it has to be done 28 days after last injection. I get injections every 28 days, so when I have my scan, I either have my scan late one day and injection the next, or scan early morning and injection that afternoon.
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2 ReactionsHello @ruthie67,
You are wise to be seeking a NET specialist! Dr. Jason Starr, https://www.mayoclinic.org/biographies/starr-jason-s-d-o/bio-20439448, is at Mayo Jacksonville, FL.
If you are looking to make an appointment, here is a link with information on how to get an appointment at any of the three Mayo locations, http://mayocl.in/1mtmR63
Hello @llr9f
I was reading your last post and wondering how your son is doing. Has he started the injections yet? How is he feeling? I look forward to hearing from you again with an update.
Agree with all that has been said. Many advances in understanding this cancer. Be sure to get second opinions. For Pnet, might recommend Dr Evans in Milwaukee. He has proven success with this.