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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

My husband has net no organs involved. Seven tumors, bones and lymph nodes involved. He is in pain all the time, very tired, sleeps a lot. He gets sandostatin shot every 28 days. Does not want chemo, he is 76. It's the uncertainty and not knowing what to do.

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Replies to "My husband has net no organs involved. Seven tumors, bones and lymph nodes involved. He is..."
Teresa, Volunteer Mentor | @hopeful33250 | Jun 5, 2023

Hello @norkatsc and welcome to the NET Support Group on Mayo Connect. I'm so sorry to hear of the pain that your husband is experiencing.

I can appreciate it when you say, "It's the uncertainty and not knowing what to do." Most of us with NETs have felt this same uncertainty and confusion. As NETs is a rare disorder it is often difficult to find support and answers.

I would first encourage you to seek out a NET a specialist for a consultation. There are many NET specialists at the three Mayo locations. If you like to request a consultation (either in person or virtual) here is a link to help secure an appointment
http://mayocl.in/1mtmR63
If a Mayo appointment is not available for you, here is a list of NET specialists throughout the country,
--Find a Doctor
https://www.carcinoid.org/for-patients/treatment/find-a-doctor/
What is your husband's medical team currently doing to address his pain?

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talkativeinfl | @talkativeinfl | Jun 5, 2023

my husband is on the same treatment and they were going to give him less sandostatin and add another infusion that COULD compromise his bone marrow and put him into lukehmia if his red blood cell count get too low. Its already too low so he didnt wanna gamble. He is also 76 as of this past April. I am fortunate that the only pain he has complained about was shoulder pain but he is tired often. He no longer has the energy to do the things he took pleasure in and when he DOES push himself he pays for it for days.

My heart breaks for you and your husband as we seem to be on a similar path. God bless you and your husband. I pray every night that they find a cure for PNet before its too late but hopefully it will be caught sooner with enough awareness.

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