Name :     Vicki Stocker

E-mail :

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.



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