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MDS Myelodysplastic syndromes

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  #1  
Old Wed Feb 8, 2017, 08:27 AM
steve_ky steve_ky is offline
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Location: Kentucky
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Unhappy My Final Post

My father Phillip passed away yesterday in the hospital at the age of 75. His MDS progressed to AML in August of 2017. The man fought up until the last hour of his life. Blood transfusions and antibiotics bought him 2.5 years of extended life. However, hope was lost once the ARA-c and Hydrea medications failed to control his white blood cell count.

Hindsight indicates that we should have started treatment with an MDS center of excellence. I believe his condition deteriorated after each attempt with the hypomethylating agents, because additional gene mutations were discovered after each round. Instead, we bounced around to various local/regional centers and there was little that could be done due to his age and weakness.

I pray mankind will discover a cure for this disease soon. Targeted therapy looks promising. God bless this audience for your warm and thoughtful contributions to both patients and caregivers.
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  #2  
Old Wed Feb 8, 2017, 12:06 PM
bailie bailie is offline
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We are very sorry Steve. Thank you for your thoughts. Everything that you and your Dad have contributed have special meaning for all of us. This is such a relentless disease. Please feel free to come back to us if you think of anything additional. You were a terrific asset for your father.
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age 70, dx RAEB-2 on 11-26-2013 w/11% blasts. 8 cycles Vidaza 3w/Revlimid. SCT 8/15/2014, relapsed@Day+210 (AML). Now(SCT-Day+1005). Prepping w/ 10 days Dacogen for DLI on 6/9/2017.

Last edited by bailie : Wed Feb 8, 2017 at 09:31 PM.
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  #3  
Old Wed Feb 8, 2017, 10:51 PM
Neil Cuadra Neil Cuadra is offline
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Steve,

We've followed your tough up-and-down battle all this time, and we know that you were always there for your father. We're sure he appreciated it.

My wife and I offer our sympathies to you and your family.
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Old Thu Feb 9, 2017, 06:53 PM
maggiemag maggiemag is offline
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Steve, please let me offer my condolences on the loss of your father. It was a long fight, but I am certain he knew how much you cared. May a cure be found, and soon.
Margaret
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Margaret, age 68, dx MDS 5 q- 5/09- now RCMD; also MGUS. TP53 and TET2 mutations
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  #5  
Old Thu Feb 9, 2017, 06:58 PM
Cheryl C Cheryl C is offline
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Location: Lake Macquarie, Australia
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My sincere sympathy to you and your family Steve, and all those who knew and loved your father. Thank you for sharing his story with us through the years.
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Dx MDS RAEB 10% blasts + hypogammaglobulinemia, Sep 2011. Jan 2012 BMB - blasts down to 2% w/out treatment so BMT cancelled. Re-diagnosis RCMD. Watch and wait from Feb 2012. IVIg 5-weekly. New diagnosis Oct 2019 AML 23% blasts in marrow, 10% blasts in peripheral blood.
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  #6  
Old Sat Feb 11, 2017, 08:50 PM
Emily A Emily A is offline
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Location: Burnet,Texas USA
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Steve,

I'm a newly diagnosed MDS patient and it's so sad to read of your loss. It sounds like you were a great caregiver. It's just a cruddy disease.

Best regards,
Emily
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Emily
MDS, Sjogren's, Hashimoto's, Neuropathy
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