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MDS Myelodysplastic syndromes

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  #1  
Old Mon Dec 3, 2018, 03:40 AM
AliceKay1 AliceKay1 is offline
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MDS to AML and 1 month to live

My doctor told me last Friday that my MDS has progressed to AML and that I have 4-6 weeks to live. Has anybody else been given such sudden news? Does everyone go so quickly with this news?

I've read about a drug, Venetoclax, approved by the FDA November 2018. Has anybody tried this, yet?
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AliceKay1, 80 years old, dx MDS 2017, being treated with Vidaza
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Old Mon Dec 3, 2018, 09:26 AM
whackerswalsh whackerswalsh is offline
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Hello Alice,

So sorry to hear your news.
My husband recently passed away MDS to AML, however he continued longer than the prognosis.

The only consolation I can give you and certainly from my part on hindsight is to pursue any clinical trials or drugs, push your consultants for any possibilities outside of the "box".

I wish you well in your endeavours and my best wishes.

Barbara
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Barbara wife of Patrick age 60, Diagnosed SAA Jan 2016, 2 Treatments of ATG partial response, continuing with Cyclosporine.
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Old Mon Dec 3, 2018, 07:00 PM
DanL DanL is offline
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I am sorry for the shocking news. That is a pretty sudden and short prognosis, but it is just a prognosis and is based on what the doctor has experienced in most cases.

Looking up Venetoclax, it looks like it has been used in two ways, both in combination therapy for AML:

Venetoclax + Vidaza or Decitabine
Venetoclax + low dose ARA-C

The first combination had response rates up to 73% and the second up to 62%. I think that it would be worth checking to see if your doctor or another may be willing to look it up and see if you fit the criteria for treatment.

https://www.onclive.com/web-exclusiv...x-combo-in-aml

dan
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MDS RCMD w/grade 2-3 fibrosis. Allo-MUD Feb 26, 2014. Relapsed August 2014. Free and clear of MDS since November 2014 after treatment with Vidaza and Rituxan. No longer experiencing nor treating CGVHD. Working on fixing long-term side effects of AVN in hips and cataracts in eyes. Life is good!
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Old Tue Dec 4, 2018, 01:52 AM
AliceKay1 AliceKay1 is offline
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Thank you,i Danl

Thank you, Dani. That was really super of you to look into venetoclax for me. I'll definitely follow up on that. Thank you.
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AliceKay1, 80 years old, dx MDS 2017, being treated with Vidaza
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Old Tue Dec 4, 2018, 01:56 AM
AliceKay1 AliceKay1 is offline
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Thank you, Barbara

Thank you for your kind words, Barbara. I'm sorry about your husband. I lost my Thayer 3 years ago.
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AliceKay1, 80 years old, dx MDS 2017, being treated with Vidaza
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Old Tue Dec 4, 2018, 10:22 AM
Sally C Sally C is offline
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Dear AliceKay,
I can't imagine how stunning it must be to get this news. Doctors can only go on what they think - but thankfully it's not in their hands. Keep the Faith as they are quite often wrong. Take care of yourself and believe in Miracles during this Christmas season. I wish you God's Peace.
All the best,
Sally

Last edited by Sally C : Tue Dec 4, 2018 at 11:10 AM.
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Old Wed Dec 5, 2018, 01:20 PM
AliceKay1 AliceKay1 is offline
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Thank you, Sally

Sally, how nice of you. Thank you so much for your kind words.
Yesterday I started on oxygen, and what a difference a day makes!. I can breathe again without gasping. Merry Christmas to you and yours.
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AliceKay1, 80 years old, dx MDS 2017, being treated with Vidaza
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Old Thu Dec 6, 2018, 11:16 AM
David M David M is offline
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Prayers for you!

AliceKay1,

I'm sure that was a shocking thing to hear from your doctor!

I want you to know that I am praying for you! I pray for your healing, and I pray God's comfort and peace will be upon you during this time.

David M
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David M, reds/whites/platelets slowly declining since 2000; hypocellular bone marrow; diagnosed as unexplained pancytopenia / "non-typical" slow moving AA; still not at treatment-required levels, but getting there.
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Old Fri Dec 7, 2018, 01:28 AM
AliceKay1 AliceKay1 is offline
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Thank you, David

Thank you, David. And I'll be thinking of you!. Goodness, to have all those blood numbers just slowly decreasing over the years and no treatment. I'll look up some of those terms you used.

I get a bone marrow biopsy tomorrow to confirm or deny that it's AML. Wish me luck!
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AliceKay1, 80 years old, dx MDS 2017, being treated with Vidaza
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Old Fri Dec 7, 2018, 12:16 PM
Hopeful Hopeful is offline
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You are in my thoughts and prayers, AliceKay1. I hope you have a good appointment!

Wishing you peace and comfort.
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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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