1. < Neuroendocrine Tumors (NETs)
Mentor

Welcome to the NETs Group! Come say hi.

Posted by Teresa, Volunteer Mentor @hopeful33250, Jan 20, 2017

Hello and welcome
Let's pull up our chairs in a circle and check in with each other and talk about how we are doing with our NET diagnosis. Any new tests, meds or treatments going on for you? What about your symptom control? Any concerns you have?

Interested in more discussions like this? Go to the Neuroendocrine Tumors (NETs) Support Group.

ladonnagissel | @ladonnagissel | Nov 13 6:42pm

Hello All .My name is Ladonna I live in Az now so went to seed Doctor with strange symptoms last December .H said was hernia CT scan tumor on pancreas thumb size so had biopsy at was for NETS. Next stop surgery in aug 2024 did with robot asst. small size for opening shorter recovery .Surgery took half of pancreas and spleen to close to tumor . I done ok for a few months now same symptoms are coming back in touch with Doctor office staff not understand what going on. Sad so may look for new place to get care .Costs are high every where .I do feel blessed I am 73 years old

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Moderator
Colleen Young, Connect Director | @colleenyoung | 5 days ago
In reply to @kbrown471 "Hello Everyone! Looking forward to learning WITH you !! I was just Diagnosed with Merkel Cell..." + (show)
@kbrown471

Hello Everyone! Looking forward to learning WITH you !! I was just Diagnosed with Merkel Cell CA at 79 yrs. old.Initial surgery 3 wks. ago took out orange size tumor in lower right leg. Just had first Immunotherapy Rx...Going to have another Immunotherapy next week and then more surgery Dec. 3 followed by LOTS of radiation. Has anyone all ready had Merkel Cell CA? How are you doing after initial Treatments?
Kathy

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Hi @kbrown471, welcome. There are several members talking about merkel cell carcinoma in this group. Here are a couple of discussions that you might be interested in joining in on:

- Merkel Cell Carcinoma: I'd like to hear from others
https://connect.mayoclinic.org/discussion/merkel-cell-carcinoma-1/
- Keytruda, an immunotherapy drug, is shrinking the Merkel Cell tumors
https://connect.mayoclinic.org/discussion/keytruda-an-immunotherapy-drug-is-shrinking-the-merkel-cell-tumors/
See all Merkel cell carcinoma related discussions using the group's search: https://connect.mayoclinic.org/group/neuroendocrine-tumors-nets/?search=merkel&index=discussions

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Moderator
Colleen Young, Connect Director | @colleenyoung | 11 hours ago
In reply to @ladonnagissel "Hello All .My name is Ladonna I live in Az now so went to seed Doctor..." + (show)
@ladonnagissel

Hello All .My name is Ladonna I live in Az now so went to seed Doctor with strange symptoms last December .H said was hernia CT scan tumor on pancreas thumb size so had biopsy at was for NETS. Next stop surgery in aug 2024 did with robot asst. small size for opening shorter recovery .Surgery took half of pancreas and spleen to close to tumor . I done ok for a few months now same symptoms are coming back in touch with Doctor office staff not understand what going on. Sad so may look for new place to get care .Costs are high every where .I do feel blessed I am 73 years old

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Hi @ladonnagissel, I can imagine you are worried that the cancer may have returned. Have you considered getting a second opinion at Mayo Clinic?

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