I don't know how to do this, so bear with me! I apparently registered on this list last year and want to update not only my profile but my treatment history. Can somebody email me & tell me what to do? (I appreciate all the help so far in navigating this but I'm a 78 year old amateur and need coaching.) Now that I've had the sense to bookmark the site I imagine I'll be able to get back more often (smile).
My OM diagnosis was in November 2008; successful plaque brachytherapy January 2009 at Sloan in NYC; tumor has shrunk (dead, Dr. Marr says). Mets in my liver (2, plus pepper flakes) dx Sloan December 2011; 4 infusionf of Yervoy December 2011 through May 2012; tumors have shrunk & pepper flakes gone as of June 2012; tumors stable as of August 2012. Next visit November.
Found OCU-MEL list early this year and have gotten so much out of it (thanks to all)!. Attended both conferences (DC & Philly), met some wonderful people, learned a lot, now educating my medical professionals & others in NJ about OM (and boy, do they need it!)...like health professionals everywhere, when they hear "melanoma" they think skin.
I've posted something about OM on my blog (DottieGSez) at wordpress.com and am talking to reporters and community members about OM. But you know, I don't want to spend what remains of my life living inside my disease.
I appreciate everything you folks say & do...I don't know where I'd be without you! Let's hope I remember how to log on next time....