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@tomrennie yes, but all I get is, "I don't know." They say it is all rare and there is not much research, but AI seems to have a lot.

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Replies to "@tomrennie yes, but all I get is, "I don't know." They say it is all rare..."

Hello @sbrown959

I think @tomrennie's suggestion (to see a palliative care doctor) is a good idea. They can help with pain management. It would be good to ask your oncology team to refer you to a palliative care team. Here is a link with information about palliative care from Mayo Clinic's website:
https://www.mayoclinic.org/tests-procedures/palliative-care/about/pac-20384637
Here is a link to a Mayo Connect discussion group where members discuss their experiences with palliative care:
--How to Care for Chronic Pain
https://connect.mayoclinic.org/discussion/how-to-care-for-chronic-pain/
I look forward to hearing from you again. Will you post about your progress in dealing with this pain?