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Diagnosed with Stage 4 pNET: What should I know?

Neuroendocrine Tumors (NETs) | Last Active: Sep 21, 2023 | Replies (36)
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@norkatsc

Currently taking hydromorphone 2mg. I think he probably should take more but he is hesitant. Currently 2 a day. The strange thing is they say he is grade 4, no organs involved but I see on here everyone sees to have at least one organ involved. Dilemma is he will not do chemo other than the sandostatin shot. Thanks for your thoughts.

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Replies to "Currently taking hydromorphone 2mg. I think he probably should take more but he is hesitant. Currently..."
Teresa, Volunteer Mentor | @hopeful33250 | Jun 5, 2023

@norkatsc
In looking for an organ that might have NETs, has anyone done a 68 Gallium PET? This type of scan is usually only available at large medical centers. Here is information about this specific scan,

https://connect.mayoclinic.org/discussion/68ga-dotatate-positron-emission-tomography-pet-now-at-mayo-clinic

Have you consulted a pain specialist or perhaps looked into Palliative Care:
--Palliative Care
https://www.mayoclinic.org/tests-procedures/palliative-care/about/pac-20384637

Palliative Care is different from hospice care. It helps patients deal with the symptoms of chronic health issues. Palliative Care might be able to offer more assistance with your husband's pain since he is not willing to go through any chemo treatments.

Has that been offered as an option for your husband? If not, you might ask for a referral to Palliative Care.

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