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slocke
@slocke

Posts: 1
Joined: Nov 04, 2012

hyaline vascular multicentric castlemans disease

Posted by @slocke, Nov 4, 2012

July 2012 found IDC in right breast. After surgery, some lymph nodes were taken to check for cancer thats when they found castlemans. Ive already been staged(loads of tests done) with hyaline vascular multicentric. I am neg. for HIV/Aids and HHV8. Will go to Mayo Clinic after my radiation treatments are done. My question is does anyone have this disease and if so, what am i to expect???Is there any support groups?

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Alex Simon
@alexsimon

Posts: 179
Joined: Feb 08, 2011
Posted by @alexsimon, Dec 12, 2012

Dear slocke,
Mayo Clinic has some information about castlemans available here:

http://www.mayoclinic.com/health/castleman-disease/DS01000

http://www.castlemans.org/ — might have resources about support groups.

and here is the NORD: http://www.inspire.com/groups/rare-disease/discussion/castleman-disease/

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