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Living with Neuroendocrine NETS, any advice?

Neuroendocrine Tumors (NETs) | Last Active: Apr 11 12:20am | Replies (111)
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@mb6502

I have metastasis to my bones as well - started in the femur and now spread to my ribs and scapula. I had three rounds of radiation, but the tumors still persist. Have your Doctor's done anything to treat the tumors in your bones and/or have they gone away or gotten smaller from the chemo? Also, do you experience any side effects from the bone lesions?
Thanks!

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Replies to "I have metastasis to my bones as well - started in the femur and now spread..."
Teresa, Volunteer Mentor | @hopeful33250 | Mar 23 8:13pm

Hello @mb6502 and welcome to the NETs support group on Mayo Connect. On Connect there is a discussion group regarding spine and bone METs. Here is the link to that discussion, https://connect.mayoclinic.org/discussion/net-in-the-spine/
As you read the posts you may find some helpful information.

Also, a consultation with a NETs specialist might be a good idea. Mayo Clinic has NET specialists at all three locations. Here is a link with information on obtaining an appointment, http://mayocl.in/1mtmR63. If you can't be seen at a Mayo facility, here is a listing of NET specialists throughout the U.S., https://www.carcinoid.org/for-patients/treatment/find-a-doctor

Do you have a lot of bone pain related to these tumors?

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Turkey, Volunteer Mentor | @tomrennie | Mar 24 7:54pm

The bone lesions are mostly all gone and not a concern. I can't attribute any side affects specifically to the bone lesions. I was really sick at the time. Sorry. What are you experiencing?

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