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#1
Fri Aug 18, 2006, 10:56 AM
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Question on number of posts
I only see 2 posts on the MDS forum. It seems like there should be more, perhaps it's just slow in starting up.
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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#2
Fri Aug 18, 2006, 01:31 PM
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Yes, you're right, but Marrowforums was just launched on August 1st at the AA&MDSIF Patient Conference in Nashville and subsequently to the AA-MDS-TALK listserv on August 17th. Many new Marrowforums members seem to be waiting for discussions to begin. We hope everyone will jump in soon. Thanks for helping to break the ice, Kirby.
Regards, Ruth Cuadra
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Diagnosed AA 10/96, MDS/RA 6/98, MUD/BMT 10/6/98
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#3
Mon Nov 6, 2006, 09:30 PM
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New posts
I posted my reply on the Vidaza thread more than a week ago and just now got notified of it in my email. This seems slow to me.
Linda
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Linda, Wife of Bob, dx REAB-1 19 Jan. 06. Beginning numbers 19% blasts, Vidaza for 10 cycles then stopped responding, as of Apr 07 REAB-T Blasts at 20 (AML). 2 cycles of Dacogen May and June, 3rd in Sep. Counts bottomed out (WBC and Plts). BMB in Oct. showed blasts at 51%. NC
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#4
Wed Nov 8, 2006, 01:12 PM
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Linda,
Perhaps you already know this, but forum members are not automatically notified when posts are made, as they would be with a listserv email list. Instead, you can "subscribe" to particular forums or particular threads that you want to follow. "Subscribing" means that the forum software keeps track of which threads or posts you have seen or haven't seen, so it can help you find what's new. When you subscribe, you get to pick how you will be notified by email. It can be instantly, in a daily summary, or in a weekly summary. There are details about this on the Forum and Thread Subscriptions page of the FAQ. You can also read Finding what's new at Marrowforums. You said it took a week for you to be notified about the Vidaza progress query thread. Do you have a subscription to the MDS forum or to that particular thread? If so, with which frequency did you ask to be sent notification emails? Regards, Ruth Cuadra
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Diagnosed AA 10/96, MDS/RA 6/98, MUD/BMT 10/6/98
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