Name : Vicki Stocker
E-mail : vistocker@msn.com
Adult: 54 years old
Location: Maryland, USA
Area(s) affected: Right forearm
Personal History:
I was diagnosed in the summer of 2012 after my wrist was swollen and painful (after I had hit it pretty hard, didn't think it was anything, but it didn't get better months later). It turned out I had melorheostosis as well as a tumor. The tumor turned out to be benign (desmoid tumor). I had it removed (which I probably shouldn't have), then the tumor grew back bigger, in addition to the melo getting bigger. Currently I'm being followed by both surgical and medical oncologists. I'm on an "anti-estrogen" drug for the tumor and have had 3 infusions of Zometa to treat the melo and bone pain. I'm having another MRI next month to see if both things are at least stable. My X-rays are stable. But the pain is pretty much there every day. I am interested to know if anyone else has been diagnosed with a desmoid tumor near their melo disease. I'm about to try physical therapy for the pain. And really hope I don't have to try radiation or chemo for the tumor.