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  #1  
Old Tue Aug 1, 2006, 01:49 PM
Neil Cuadra Neil Cuadra is offline
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Join Date: Jul 2006
Location: Los Angeles, California
Posts: 2,339
Your comments are welcome

There are many ways in which Marrowforums can develop and grow. You can help by letting us know your ideas and suggestions.

In return, we can help you by answering questions about use of the site.

To ask a question about Marrowforums, make a comment or suggestion, report a problem, or tell us what you like or don't like, start a new thread here in the Site Comments forum.

If you prefer to communicate with us privately, send a Private Message to Neil Cuadra or to the next available Administrator.

Thank you for your participation!

Neil Cuadra, site owner
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  #2  
Old Sun Sep 17, 2006, 04:21 PM
knstone knstone is offline
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Join Date: Aug 2006
Location: Cincinnati, OH
Posts: 89
? on Marrowforums

Hi Neil,
Thanks for all your work on this forum.
We need to get everyone on it and of the email one - which has been quite busy lately.

Question, is there a way that a new post in Marrowforums, for example in MDS; could generate a notification in my email that a new post has occurred?

Thanks again,
Kirby
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Kirby71, RAEB2 dx 2/04, Thalidomide 30 mo, Revlimid 18 mo, No resp Vidaza
6/09 2nd Thalid use, Promacta, Lowdose Dacogen added 10/09 at 40% blasts. 5/11 BMB-blasts 8%.
2/11 2nd Revl restart=good resp, Platelets drop 6/11, 3rd Thalid,+Nplate+Dacogen. 7/12 Cnts stable for 10 mo.
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  #3  
Old Tue Sep 19, 2006, 02:04 AM
Neil Cuadra Neil Cuadra is offline
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Join Date: Jul 2006
Location: Los Angeles, California
Posts: 2,339
You aren't the first to ask about email, Kirby, so we've put together a small tutorial about the choices.

The Finding what's new at Marrowforums thread explains ways to get email when new posts are made, and other ways to learn what new threads and posts have been made.

If you or others have more questions about this, just let us know by starting new threads here in the Site Comments section.
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  #4  
Old Mon Oct 2, 2006, 03:03 PM
magpie75 magpie75 is offline
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Location: State College, PA USA
Posts: 12
Thanks

Thanks for working on this. I am very interested in reading information from the archives.
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Maggie (56 year old woman) diagnosed with severe AA in January 2006. Treated May 2006 with High Dose Cytoxin, Nov.2008 had BMT, both at John Hopkins. WBC & Platelets now normal, RBC near normal, still high ferritin level.
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  #5  
Old Mon Dec 11, 2006, 09:22 PM
Monica Meyer Monica Meyer is offline
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Join Date: Aug 2006
Location: Manhattan, NY
Posts: 8
MDS convention in Los Angeles?

Can you please tell us the dates and the hotel of the MDS convention to be held in Los Angeles next August. Thank You very much.
Monica Meyer


Quote:
Originally Posted by Neil Cuadra View Post
There are many ways in which Marrowforums can develop and grow. You can help by letting us know your ideas and suggestions.

In return, we can help you by answering questions about use of the site.

To ask a question about Marrowforums, make a comment or suggestion, report a problem, or tell us what you like or don't like, start a new thread here in the Site Comments forum.

If you prefer to communicate with us privately, send a Private Message to Neil Cuadra or to the next available Administrator.

Thank you for your participation!

Neil Cuadra, site owner
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  #6  
Old Tue Dec 12, 2006, 01:54 AM
Neil Cuadra Neil Cuadra is offline
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Join Date: Jul 2006
Location: Los Angeles, California
Posts: 2,339
Quote:
Originally Posted by Monica Meyer View Post
Can you please tell us the dates and the hotel of the MDS convention to be held in Los Angeles next August. Thank You very much.
Monica Meyer
If you are referring to the AA&MDSIF 2007 Patient & Family Conference next August, please see our news story.

At this time, dates are known but the hotel is not. You can watch that news thread (or subscribe to it) for further announcements.
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  #7  
Old Sun Mar 20, 2011, 07:02 PM
Gokcen Gokcen is offline
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Join Date: Nov 2010
Location: europe
Posts: 13
thanks

Thanks to everyone here...
this site gives me hope..
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age 62 - MDS-AML dx april 2010. %45 blast.
(induction chemo may2010 + 7 cycle vidaza), Blast %20 july 2011 ...
Haploidentical SCT Sept2011,
risky- rough days... going fine so far !!! jan2013
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  #8  
Old Sun Jan 6, 2013, 11:26 PM
Heather8773 Heather8773 is offline
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Join Date: Jan 2013
Location: Houston, TX
Posts: 239
FB

Hi just wondering if there was a button (not tech savy its prob called something eles?) that could be added to post this site onto facebook to continue raising awareness?
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Heather, wife of Ronald age 31; dx PNH 2012; Dx VSAA 2013; previously on eculizumab(Solaris) hATG 2/20/13 cyclosporine 400 mg daily. 37 units RBC and 15 units of platelets.
Now -pentam,vorconizole,valtrex, valcyte, actigall, multivitamin, Pepcid , prograf, magnesium.
10/10 MUD 10/10/13
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  #9  
Old Mon Jan 7, 2013, 02:00 AM
Neil Cuadra Neil Cuadra is offline
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Join Date: Jul 2006
Location: Los Angeles, California
Posts: 2,339
Heather,

We've talked about creating a Marrowforums Facebook presence but haven't made it a priority yet. Unlike many other websites, we're not interested in attracting as many site visitors as possible, only people who are affected by bone marrow failure diseases. So people tend to hear about us through their medical sources, support groups, or through word of mouth rather than through social networks.
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