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MDS Myelodysplastic syndromes

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  #1  
Old Mon Mar 4, 2019, 01:18 AM
AliceKay1 AliceKay1 is offline
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Location: Walnut Creek CA USA
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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.
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AliceKay1, 80 years old, dx MDS 2017, being treated with Vidaza
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  #2  
Old Mon Mar 4, 2019, 07:32 AM
Sally C Sally C is offline
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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,
Sally
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  #3  
Old Mon Mar 4, 2019, 01:05 PM
Rarity Rarity is offline
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That's wonderful news! So happy for you Praying for your new treatment.
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  #4  
Old Mon Mar 4, 2019, 10:44 PM
Hopeful Hopeful is offline
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Thanks for sharing your amazing news! Wishing you the best!
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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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  #5  
Old Mon Mar 4, 2019, 11:36 PM
quantpsyc quantpsyc is offline
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AliceKay that's wonderful news. I hope your remission continues!
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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", MUD HSCT May 7, 2019.
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  #6  
Old Sun Mar 10, 2019, 09:34 AM
Barb M Barb M is offline
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Location: Hendersonville, NC
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Venetoclax

Glad to hear your news! Are you part of a clinical trial at Stanford?
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  #7  
Old Tue Mar 12, 2019, 10:00 PM
maggiemag maggiemag is offline
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Location: Cincinnati, OH - United States
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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
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Margaret, age 68, dx MDS 5 q- 5/09- now RCMD; also MGUS
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  #8  
Old Tue Apr 23, 2019, 02:55 PM
Honeybun Honeybun is offline
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Location: Perth Western Australia
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Hi Alice

Have you got an update on jow you are going. I may be starting tomorrow.

Thanks

Honey
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Dx June 2013 MDS del 5q and 7t. Further chromosone changes August 2017. Lenolidomide and 10 months on Azacytadine failed. Transition to AML August 2018 failed induction chemo. Trial drug FT2101 failed at 6 months. Next on Venetoclax with cytoterabine.
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  #9  
Old Tue Apr 23, 2019, 04:17 PM
Sally C Sally C is offline
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Alice Kay,
I don't mean to hijack your thread but I'm so glad that Honeybun posted on your thread. Honey, if you go back to where Alice Kay posted, I think in Dec. on a different thread, she was given one month to live. I posted then that the doctors aren't God, they just try to heal and they give their opinions. I told her to believe in Christmas Miracles. When I saw the prognosis your doctors gave you, the first person who came to mind was Alice Kay.
All the best to you and Alice Kay.
Sally
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