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MDS Myelodysplastic syndromes

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  #1  
Old Fri Jul 3, 2015, 09:34 AM
Wife of Diver Down Wife of Diver Down is offline
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Join Date: Mar 2014
Location: Miami,FL
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A tribute

One year ago my husband died from complications related to SCT for MDS but his passion for life and cure lives on. As my daughter heals she hopes to help others with MDS.

https://www.facebook.com/pages/MDS-F...875037?fref=nf

IN MEMORY OF ANTHONY PELLE...Yesterday was the l year anniversary of Anthony Pelle's passing and although we never met him we feel we know him through his daughter Janna. Janna is an MDS Advocate in the truest sense. In honor of her Dad, both while he was alive and even in the wake of his passing, she continues to be involved with the MDSF, sharing her story in our newsletter, creating her music album The Show Must Go On, and performing at our 13th Int'l Symposium. And on August 10 she is holding an MDS Awareness & Benefit Concert, 7 - 9 PM at The Bitter End. THANK YOU for your support Janna!!
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Old Sat Jul 4, 2015, 10:16 AM
Whizbang Whizbang is offline
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Join Date: Aug 2013
Location: Central NJ
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Thank you Janna

Thank you Janna for being an advocate for MDS. Hoping the future brings more success stories. Last July 4th David (Whizbang) got the devastating news that his MDS transformed into AML 8 months after SCT. He begged his doctor to let him come home for July 4th weekend to spend time with his family. We had a huge bbq and took lots of pictures as we knew his time here was limited. His 1 year is 12/17/14, but today is a tough day for us. We will have our bbq and fireworks as usual. Its what my daughters want and we know it is what David would have wanted. Happy July 4th!! Wishing health and happiness for everyone on the forum.

Donna
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Married, father of three daughters; now 46; diagnosed w/ Major form MDS 6/18/2013; had low counts across the board; Multiple chromosome abnormalities; Finished 2nd round Dacogen 9/13; SCT - Oct. 31, 2013; Sibling match 10/10 ; 5.5% blasts down to 3%, now 1% (post BMT)
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Old Sat Jul 4, 2015, 11:37 AM
bailie bailie is offline
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Join Date: Dec 2013
Location: McMinnville,OR
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I thank both of you for paying tribute to Anthony and David. We learned so much from their experiences and that will not be forgotten by us who are still alive.

Donna, my MDS transformed to AML eight months after SCT. I understand the feelings that all of you must have felt at that time.
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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.
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Old Mon Jul 6, 2015, 05:19 AM
Cheryl C Cheryl C is offline
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Join Date: Dec 2011
Location: Lake Macquarie, Australia
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Thank you Donna and Wife of DiverDown. Your partners were loved and admired by us all and we haven't forgotten them either. God bless you both.
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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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