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MDS Myelodysplastic syndromes

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Old Mon Mar 4, 2019, 01:18 AM
AliceKay1 AliceKay1 is offline
Join Date: Sep 2017
Location: Walnut Creek CA USA
Posts: 42
Smile Life after vidaza

I went to Stanford University for a second opinion when it appeared vidaza had run its course with me. They told me about a new drug on the market only approved by the FDA November 2017 called venetoclax. Look it up. I've been on it (it's a pill) for a month now, together with infusions of dacogen, and my blasts have gone from 51 per cent to 3!. It's a constant battle with nausea but Zofran helps, and remission is possible. Wish me luck. So far so good.
AliceKay1, 80 years old, dx MDS 2017, being treated with Vidaza
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Old Mon Mar 4, 2019, 07:32 AM
Sally C Sally C is offline
Join Date: Dec 2010
Location: Chesterfield, Va.
Posts: 443
Hi AliceKay,
I have been wondering about you! I see you got your Christmas Miracle. So much for a month to live. Great! to hear from you.
All the best,
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Old Mon Mar 4, 2019, 01:05 PM
Rarity Rarity is offline
Join Date: Sep 2017
Location: USA
Posts: 51
That's wonderful news! So happy for you Praying for your new treatment.
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Old Mon Mar 4, 2019, 10:44 PM
Hopeful Hopeful is offline
Join Date: Jan 2009
Location: California, USA
Posts: 713
Thanks for sharing your amazing news! Wishing you the best!
52 yo female, dx 9/08, AA/hypo-MDS, subclinical PNH, ATG/CsA 12/08, partial response. Tried slow cyclosporine taper over 4+ years. Platelets fell, so back on cyclosporine. Trisomy 6 clone in 5% of cells.
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Old Mon Mar 4, 2019, 11:36 PM
quantpsyc quantpsyc is offline
Join Date: May 2017
Location: Leland, NC
Posts: 7
AliceKay that's wonderful news. I hope your remission continues!
Kathleen, adoring wife of Ed 67 yo, Dx April 2017 MDS RAEB2, no chromosomal mutations, as of August 2017 only supplement therapy, living and loving each day.
October 2018 started Decitabine, "exceptional response", March 2019 expect MUD-HSCT.
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Old Sun Mar 10, 2019, 09:34 AM
Barb M Barb M is offline
Join Date: May 2011
Location: Hendersonville, NC
Posts: 25

Glad to hear your news! Are you part of a clinical trial at Stanford?
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Old Tue Mar 12, 2019, 10:00 PM
maggiemag maggiemag is offline
Join Date: Sep 2012
Location: Cincinnati, OH - United States
Posts: 84
Wow, what a response to that drug! Good job, AliceKay! You give hope to others. I recently heard about that drug for AML. Keep it up!
Margaret, age 68, dx MDS 5 q- 5/09- now RCMD; also MGUS
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