Updating information

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10/5/2012 9:00am
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Replies: 6

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....

"Do what you can, with what you have, where you are." (Teddy Roosevelt)

Mrs. D - (10/5/2012 - 10:10am)

Hot Dottie... (Wow... I meant to type Hi Dottie... but auto correct changed it to Hot Dottie so I am going to keep it)!  

Sarah Elizabeth here.  Why don't you call me later today and I can talk you through it over the phone.  Much easier that way.  512-695-2320.  I should be around to help you 1pm ish - late tonight.  =)

Be well, 

Se

Dottie Gutenkauf - (10/5/2012 - 10:14am)

Oh SE, you cutie!  Today I'm having a brain CT (to see if I have any left) and I am going to check out the possibility of scalp/skull mets--what diagnostic tools would identify them? 

I'm not good at absorbing complex info over the phone (or remembering it afterwards), so would appreciate a personal email which I could print out and paste to the wall above my computer--that would be much easier for me!  A techie I'm not and an email would be VERY HELPFUL!!

thanks

not so hot Dottie

 

 

 

"Do what you can, with what you have, where you are." (Teddy Roosevelt)

Fun Fact #34:  Hot Dottie was in fact the twin sister of Toddy, famous winter-drink mixologist and keeper of His Magesty's Keg under George II.

 

--Tom

Keep Rowing!

wise guy!

"Do what you can, with what you have, where you are." (Teddy Roosevelt)

beckysel - (10/5/2012 - 2:05pm)

Hi Dottie,

Glad to see you here!  In response to your question about how to update your profile, I believe you can click on the "Update Info" button on the top right-hand corner of the webpage (under the larger "Donate Now" button).  Once you're there I think you click on "Profile Information" and you should be able to make your updates there.  Let me know if this doesn't work...

Thinking of you!
Becky

“Never doubt that a small group of thoughtful, committed citizens can change the world; indeed, it's the only thing that ever does.” - Margaret Mead

eyecancerny - (10/6/2012 - 4:29pm)

Thanks Becky,

I needed to update my profile too.  A little difficult to navigate the site.

Anne Marie