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Should l be concern if my SUV is 9.6, my liver has always been a little longer tip, but recently l have had aches in front and my back. I understand that is a high SUV, should be no higher than 2. My lung NETS our small stage 2..
I have NETS Syndrome for a few years, as l had nodules which were consider dormate, till two years ago. I want answers for my liver pain! No the Net specialist is worthless. Heading to Boston.
Pls advise me on the SUV?
SUV us not a measurement of aggressiveness. The figure of 2 you quote relates to FDG PET nor somatostatin receptor PET (Ga68/Cu64).
https://ronnyallan.net/2022/10/19/understanding-your-somatostatin-receptor-sstr-pet-results/
Ronny-
Immunotherapy on the site?
I was diagnosed with stage 4 pancreatic NET mets to liver in Jan 2019. After a few weeks with a 3-6 mo survival diagnosis some additional tumor analysis found they were Hi-MSI tumors -eligible to be treated with recently approved (for all Hi MSI solid tumors) immunotherapy.
I had great results being treated with ipilumumab + nivolumab for 24 mos. Tumors shrunk to about 10% of the original mass and then were stable for a couple more months. Once the tumors started growing (slowly) again, I came off the original treatment and have been on investigational immunotherapy since. First trail was successful for 3-6 mos. Now I’m onto the 2nd trial and feeling better again.
With an FDA approved immunotherapy for Hi-MSI NETs, suggest it would be useful to have info about immunotherapy on your site. I was treated at MD Anderson in Houston.
The team at MD Anderson almost immediately did tumor analysis that flagged the biomarkers which showed immunotherapy would likely be effective. Suspect not all patients have that good fortune.
Let me know if I can help.
-P
What is your grade and differentation?
The immunotherapy experience with Neuroendocrine Neoplasms is not great, there’s always outliers of course.
I was wondering if biomarkers would be of quality “use”, in seeing if it would control my” Neuroedocrine/carcinoma. Lung tumors?
They are two small ones in both lungs, surrounded with several NETS. I am 74, they said roll the dice, 1 to 2 years survival.
I have NETS, symptoms flushing, red/ lesion on lip, colon is a mess with diverticulitis, “active” 90% of time. I am at UMASS medical center, in Worcester MA
Neuroendocrine (NET) or Neuroendocrine Carcinoma (NEC).
What is your grade or Ki-67?
What is your stage?
What was your last 5-HIAA test result?