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#1
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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 |
#2
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? 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. |
#3
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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. |
#4
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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. |
#5
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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:
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#6
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Quote:
At this time, dates are known but the hotel is not. You can watch that news thread (or subscribe to it) for further announcements. |
#7
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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 |
#8
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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 36; dx PNH 2012; Dx VSAA 2013; eculizumab(Solaris) hATG 2/20/13 cyclosporine 400 mg daily. 37 units RBC and 15 units of platelets. Post BMT -pentam,vorconizole,valtrex, valcyte, actigall, Pepcid , prograf, magnesium. 10/10 MUD 10/10/13 Now no PNH or AA. Mixed Chimerisim |
#9
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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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