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MDS Myelodysplastic syndromes

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  #1  
Old Fri Dec 19, 2014, 08:51 AM
Whizbang Whizbang is offline
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RIP Whizbang

Hi, everyone. I wanted to inform you that my husband, Dave passed away 12/17 at 4am at Memorial Sloan Kettering Hospital. As most of you know he was diagnosed with MDS, had a transplant and was doing well for 8 months. July he relapsed into AML. Was preparing for a second transplant, but the chemo never brought the blasts low enough. He started a clinical trial in October. Unfortunately he came down with pneumonia which progressed to blood clots in his lungs, kidney failure and needed a ventilator. He fought for 12 days in the ICU. But it gives us peace that he is no longer in pain and has earned a high place in heaven. He was the most amazing father and husband and wanted to stay on this earth for me and his 3 daughters. I know this forum gave him a lot of support during his 18 month journey. Good luck to all of you!! Wishing health and happiness for the new year. 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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  #2  
Old Fri Dec 19, 2014, 10:41 AM
DanL DanL is offline
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Donna,

I am heart broken for you and your family. Dave was a valuable member of the marrow forums and was an inspiration to all of us fighting this disease. Please accept my sincere condolences.

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. Experiencing autoimmune attack on CNS thought to be GVHD, some gut, skin and ocular cGVHD. Neuropathy over 80% of body.
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  #3  
Old Fri Dec 19, 2014, 10:44 AM
KMac KMac is offline
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I am so sorry to hear this. Dave's positive attitude and intelligent, thoughtful input were an inspiration to all of us.
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Kevin, male age 45; dx SAA 02/2012 - Hgb 5.8, platelets 14, ANC 200, 1% cellularity. Received ATG 03/2012. As of 03/2015, significant improvement - Hgb 15, platelets 158, ANC fluctuates around 1000, Lymphocytes 620. Tapering cyclosporine. BMB 20-30% cellularity.
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  #4  
Old Fri Dec 19, 2014, 11:39 AM
Neil Cuadra Neil Cuadra is offline
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Donna,

My wife and I send our deepest sympathies. Ever since he joined these forums 16 months ago, it's been clear that David was determined not only to share his story but to support every other forum member he talked with. His positive views and kind words were always welcome and appreciated. You've lost a great husband and we feel the loss too.
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  #5  
Old Fri Dec 19, 2014, 02:01 PM
Birgitta-A Birgitta-A is offline
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Dave

Dear Donna!
How sad that Dave lost his fight against his disease. He was so young and we hoped that he should win over his MDS. He is now resting in peace.
Warm regards
Birgitta-A
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  #6  
Old Fri Dec 19, 2014, 02:34 PM
curlygirl curlygirl is offline
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I'm very sorry to hear this. It's been a great honor to share the boards with Dave during his journey. Your girls have a very strong and loving father to remember and I know you'll take good care of them. I'm sure this is a very tough time so be sure to give yourself some TLC, too.
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  #7  
Old Fri Dec 19, 2014, 03:59 PM
bailie bailie is offline
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Really sad. I am sorry. Dave helped me and many others so much with his positive attitude.
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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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  #8  
Old Fri Dec 19, 2014, 05:17 PM
johnwc johnwc is offline
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So So sorry. I got so much inspiration and good info from Dave. Blessings to you and your family.
John in Portland
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John, 68, Portland, Or. Dx with CMML on 12/1/2013, 3 days before admission for SCT, blasts went to 23%, AML. Did 7+3 chemo regimen. The chemo worked and blasts are 1% and did BMT on 1/1/15.- 12/2/15, ongoing GVHD in eyes. Lung fungus and Bronchiolitis Obliterans (BO).
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  #9  
Old Fri Dec 19, 2014, 06:12 PM
Julianna Julianna is offline
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I'm so sorry Donna xo
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Julie (38yrs); dx AA 1996 & treated w/ATG, cyclosporine & G-CSF; 2010 dx int-1 secondary MDS, low platelets, on prevention antibiotics, fevers of unknown origin, MUD found for BMT when the time is right, which is now! MDS transformed to AML after many infections.
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  #10  
Old Fri Dec 19, 2014, 09:01 PM
bebop bebop is offline
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Donna I am so sorry for your loss. He was a great support for many here on the forums. Rest in peace dear one!
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  #11  
Old Fri Dec 19, 2014, 09:34 PM
Lifeguard Lifeguard is offline
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Donna, I'm so sorry for your loss. My family's thoughts and prayers are with you and your family.
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Diagnosed MDS Del 5q October 2007, blood transfusions 2010, commenced Revlimid 2010. Transfusion independent.
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  #12  
Old Fri Dec 19, 2014, 10:14 PM
Chirley Chirley is offline
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I'm sorry to hear this news and for your loss. He fought his disease with grace and good humour. May he rest in peace.
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  #13  
Old Fri Dec 19, 2014, 11:15 PM
JordanN JordanN is offline
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Dear Donna,

I'm so sorry to hear of your husband's passing! He was such a great support to so many on these forums - he will be dearly missed! My heart breaks for you and your three girls but know that you will be in all our thoughts and prayers, and I know Dave is watching over you from Heaven!
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  #14  
Old Sat Dec 20, 2014, 12:55 AM
Hopeful Hopeful is offline
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So sorry to hear this! He was a wonderful spirit on this forum.
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55 yo female, dx 9/08, AA/hypo-MDS, subclinical PNH, ATG/CsA 12/08, partial response. small trisomy 6 clone, low-dose cyclosporine dependent
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  #15  
Old Sat Dec 20, 2014, 01:01 AM
sherryjac2 sherryjac2 is offline
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Prayers for you...

I visit the forums once in a while to stay connected with the people who have made this journey with me. When I saw RIP Whizbang, I wondered what he was going to say, never thinking that you were posting! He was such a fighter, I was convinced he'd survive this dreaded disease. Unfortunately, those of us who do survive really don't know why we did and why someone else didn't. God bless you and your children at this holiest of seasons. I pray that you have the support of family and friends.
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Sherry Baby 62 Diagnosed 2/11/12 MDS to AML-6; del 20q and trisomy 21; Vidaza 3 month trial unsuccessful; ALLO BMT 7/2/12; Sister Donor 10/10 match; Chronic GVHD mucous membranes, otherwise all's well :0)
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  #16  
Old Sat Dec 20, 2014, 02:52 PM
Sue H. Sue H. is offline
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RIP Whizbang

Dear Donna,
So very sorry to hear about Dave. My heart goes out to you and your daughters. I wish you much strength and comfort at this sad time.
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  #17  
Old Sat Dec 20, 2014, 05:05 PM
Cheryl C Cheryl C is offline
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Dear Donna - As you know I have messaged privately, but just wanted to add my public condolences to the many which you will receive for your great loss. I will miss Dave's cheerful, positive posts - even in the last few weeks when things were difficult for him he still encouraged others. "Precious in the sight of the Lord is the death of His saints" (Ps. 116:15).
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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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  #18  
Old Sat Dec 20, 2014, 06:34 PM
Barbara K Barbara K is offline
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Donna, I'd like to offer my sincerest condolences to you, your daughters, and your extended family for such a terrible loss. It was easy to see from Dave's always upbeat and generous posts how amazing he must have been as a husband, father, family member, and friend. Barbara.
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  #19  
Old Sun Dec 21, 2014, 03:30 AM
Smarti54 Smarti54 is offline
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Loss

I am so sorry for your loss. You and your family are in my prayers.
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Sunny age 36 diagnosed Jan 2014 with low grade MDS. Recurrent infections: GI, pyelonephritis and sepsis, then lower GI bleed. PoT syndrome January 2015. WBC 4, RBC 2.6, Hgb 9 Hct 27 platelets 62 MCV 107. Watch and wait. 11/15 BMB showed del(13)(q12-q14)
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  #20  
Old Sun Dec 21, 2014, 10:28 AM
Bhutt Bhutt is offline
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I'm so sorry for you loss.I followed Dave's story and kept praying that everything was going to work out. May God be with you to help comfort your sorrow.

Blair

Last edited by Bhutt : Mon Dec 22, 2014 at 07:41 AM.
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  #21  
Old Sun Dec 21, 2014, 11:21 AM
Fana Fana is offline
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I am so sorry for you loss Donna.
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  #22  
Old Mon Dec 22, 2014, 11:01 AM
Chad S Chad S is offline
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Donna,
I am so sorry for your loss. Dave touched all of us in a very positive way.
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Chad, husband of Danielle age 39, diagnosed MDS (RAEB-1) Feb 2013, BMT May 2013
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  #23  
Old Sat Dec 27, 2014, 04:49 AM
SLB SLB is offline
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Very sorry for your loss. I agree with Sherryjac.. There is sometimes no rhyme or reason to why, for some the journey ends way too soon. My deepest sympathies for you and your girls.
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Sharnie, 37yo, dx Mar 2012 RAEB II 13% blasts. 8 months of Vidaza. Transformed to AML in Nov 2012, induction chemo, no remission. 2nd lot of chemo, remission achieved. SCT with 8/10 match, Mar 2013.
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  #24  
Old Fri Jan 2, 2015, 05:48 PM
vickij vickij is offline
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Donna

Hugs & Prayers to you and your family. I am so sorry for your lose. I always looked forward to the posts by Whizbang. he was always so encouraging.
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62 yr old female. dx AA 3/12.treated with ATG 4/12.dx MDS 4/13. MUD BMT on June 25th,2013
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  #25  
Old Fri Jan 2, 2015, 06:14 PM
Sally C Sally C is offline
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Dear Donna,
I want to express my sympathies as well. Dave's posts were always upbeat, compassionate and caring.
May God comfort you and your family as only He can.
God Bless,
Sally
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