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MDS Myelodysplastic syndromes

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  #26  
Old Thu Mar 5, 2015, 11:33 PM
vikasgoyal vikasgoyal is offline
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I am heart broken. Wish you peace and comfort
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Father 72, diagnosed MDS RCMD June 2011. HGB 5.5, WBC 7.2, Plt 400 Cytogenetics Normal. Blast cell count 2% ( July 2012 ). Currently on Danazol, Ferritin 750
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  #27  
Old Fri Mar 6, 2015, 11:24 AM
rkp rkp is offline
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Dear Birgitta,
I echo everybody else's feelings here....you are a Gem of a person.
Thank you very much for your support and kindness.
Wish you peace and comfort.

-rkp
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RP, Daughter of SK age 66, diagnosed MDS July 2012
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  #28  
Old Fri Mar 6, 2015, 04:38 PM
Barbara K Barbara K is offline
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Farewell

Dear Birgitta--This is heartbreaking news. I will carry with me always the memory of your compassion, calm, and wisdom. Barbara.
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  #29  
Old Sat Mar 7, 2015, 10:18 AM
maggiemag maggiemag is offline
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Birgitta, I, too, am heartbroken. You are the epitome of grace, dignity, wisdom, and have always graciously imparted your knowledge to help us. I wish you peace, serenity, and freedom from pain in the coming days, and may your family also find comfort in knowing what a superb role model you are.
Mags
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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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  #30  
Old Sun Mar 8, 2015, 01:01 AM
MaryS MaryS is offline
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Join Date: Nov 2013
Location: Herndon VA my father in New Orleans,La
Posts: 24
Dear Brigitta,

You have fought a good fight and you have helped so many along the way.
My dad is in hospice too -day 9.
God knew your purpose. You helped educate and comfort so many Brigitta.
I pray for comfort, peace, and good helpers to help you on your journey.
You have earned your wings. It will be ok- God will take care of you now.
With love, much admiration
Your friend,
Mary Gay Schmitz
Xoxoxo
👼🙏
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Mary, daughter / caregiver of Bob age 77; on Oct 1 2013 dx with MDS/MPN overlap +Trisomy. Jak2 at d< 5 blast. , and on March 1 2014 Dx with AITL non Hodgkin's Lymphoma.
Tx: decitabine/prednisone/Jakafi?
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  #31  
Old Sun Mar 8, 2015, 06:30 AM
SLB SLB is offline
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Words don't seem to do justice at a time like this. But I agree with everyone your wisdom, strength, compassion & knowledge will be surely missed here.. Peace to you and your family. We will miss you xx
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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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  #32  
Old Sun Mar 8, 2015, 03:39 PM
Sue H. Sue H. is offline
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Dearest, dearest Birgitta,
Blessings, prayers and love to you and thank you for being such a true inspiration to so many people in this life.
Peace and eternal happiness,
Sue
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Sue, wife of Arnold age 58; diagnosed v.s.AA April 2012; ATG, Cyclosporine May 2012 - minimal response; Eltrombopag Dec. 2012- Sep. 2014, eventually good response all bloodlines and transfusion free. Continuing Cyc. at present.
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  #33  
Old Mon Mar 9, 2015, 09:16 AM
vickij vickij is offline
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Join Date: Apr 2013
Location: Connersville, Indiana
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Birgitta

Hugs & Prayers.
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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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  #34  
Old Thu Mar 12, 2015, 05:25 PM
Faye R Faye R is offline
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I'm new to this forum, thank you for sharing your time to us God Bless
Faye R
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  #35  
Old Sat Mar 14, 2015, 06:49 AM
joesmith joesmith is offline
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Location: New Jersey, USA
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Peace

Hi Brigatta - You have been a strong fighter and a constant source of knowledge and inspiration to several others. You will be missed. There are many few people that can touch the lives of so many and you are one of them. May you find peace and eternal health!
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  #36  
Old Sun Mar 15, 2015, 08:59 PM
evansmom evansmom is offline
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Location: Ontario, Canada
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Dear Brigitta,

Evan and I are wishing you peace and comfort in this, your final chapter of a journey travelled with such dignity and honesty.

You are very special to us all, it's been a privilege sharing this community with you.

Fly high,

Nicole
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Nicole, mom to Evan (20); diagnosed SAA November 2007, hATG mid-November 2007, no response after 6 months, unrelated 9/10 BMT June 2008, no GVH, health completely restored thanks to our beloved donor Bryan from Tennessee.

www.caringbridge.org/visit/evanmacneil
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  #37  
Old Mon Mar 16, 2015, 03:58 PM
AAteen AAteen is offline
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Dear Birgitta,

Your constant sharing of knowledge and experience has given hope and courage to many in their journey of fighting against bone marrow diseases. Your compassion, wisdom, inspiration, support and care to forum members will be in my memory. Wish you and your family peace, comfort and strength.
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AAteen, niece dx moderate AA early 2009;ATG in mid 2010 with partial response;currently on cyclosporine; cytogenetic abnormality of trisomy 8 found in early 2014
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  #38  
Old Thu Mar 19, 2015, 02:34 PM
Marrowforums Marrowforums is offline
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The family of Birgitta Alexius was gracious enough to let us know that Birgitta passed away peacefully in her sleep, in the presence of her family, on March 14, 2015.

She lived with MDS for 9 years, to age 75. She was one of our most respected and beloved Marrowforums members, sharing her wisdom, experience, and caring good nature with other forum members for over 7 years.

She wrote her Personal Profile to help other patients, and many took inspiration from her positive attitude and calm dignity, even as she faced the end of her life. We all benefited from her presence here, and we will remember her very fondly.
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  #39  
Old Thu Mar 19, 2015, 04:55 PM
bebop bebop is offline
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My condolences to the family. She was surely a great inspiration to us all here on the forums. She will be missed terribly.
FLY HIGH my friend!
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  #40  
Old Thu Mar 19, 2015, 06:40 PM
Cheryl C Cheryl C is offline
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My deepest sympathy to Birgitta's family. May God bless and comfort you at this sad time. Thank you so much for sharing her with us. I miss her so much already.
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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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  #41  
Old Fri Mar 20, 2015, 12:58 AM
Hopeful Hopeful is offline
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Peace to you Birgitta. We will miss your light.
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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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  #42  
Old Fri Mar 20, 2015, 02:33 AM
JordanN JordanN is offline
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My deepest sympathies to Birgitta's family and friends. I hope you can find comfort in knowing what a wonderful inspiration she was to all who have come to the forums for knowledge and comfort. She was the definition of a true lady - intelligent, compassionate, brave, witty, and dignified! I will miss her presence here so much and hope she has found peace and eternal happiness!
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  #43  
Old Fri Mar 20, 2015, 06:09 AM
Annettec Annettec is offline
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Location: New Brunswick Canada
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RIP

Rest in Peace Birgitta... You've earned your wings. My deepest sympathies to your family and friends.
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  #44  
Old Fri Mar 20, 2015, 12:00 PM
rkp rkp is offline
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Heartfelt condolences to Birgitta's family.
She was an inspiration.
We will miss you Birgitta.

-rkp
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RP, Daughter of SK age 66, diagnosed MDS July 2012
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  #45  
Old Sat Mar 21, 2015, 12:10 AM
kyis kyis is offline
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I am so sorry!
My heart felt condolences to your families and all who loved and appreciated her so much. Thank you for sharing her with us. May she rest in peace.
__________________
Male 56, MDS 2008, pre SCT Hypocellular 5-30%, Normal Cytogenetics. WBC 500, anc 45, Blasts 15%, Platelets 45, HGB 7, RBCC 1.71, HCT 20.5, MCV 120. Became Transfusion dependent 3/2016. 5 cycles VIdaza started 3/14/16 which reduced Blast counts. . Marrow Transplant 9/1/16, Hereditary MDS/AML.
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  #46  
Old Wed Apr 1, 2015, 05:01 PM
mausmish mausmish is offline
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I hadn't visited the forums for quite awhile and am shocked and saddened by the news of Birgitta's death. I'm glad she had a peaceful end. She will be sorely missed. Condolences to her family and friends.
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Karen, age 62, dx MDS RAEB-2 1/8/10: pancytopenia WBC 2.7k/Hgb 7.4/Hct 22.1/Plt 19k; complex cytogenetics -3,del(5)(q14q33),-6,+8,+mar,17% blasts. MUD BMT Johns Hopkins 11/30/10. Dx tongue cancer 8/31/12. ok now. blog mausmarrow.com
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  #47  
Old Wed Apr 1, 2015, 11:36 PM
Caregive Caregive is offline
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I haven't posted her for several months but I didn't expect to read your message, Brigitta. I wish you many comforts as you go on the journey. You have been an amazing support to us all.

My dear husband passed away in November. He went down very rapidly in the end but looking back I could see things I couldn't see then regarding his being less strong though he still had plans for the next garden. It was so very helpful to be able to read on this site, including input from you, Brigitta. In the end Don was diagnosed at Cleveland Clinic with cmml1. There were always questions of his exact illness so we went with the flow when it was suggested he may have MDS. Then when another doctor said maybe cmml1 we went with that. He was strong and responsive to the end.

I made a contribution to aamds.org in his memory and hope it helps solve some of the issues with MDS, at least defining what it is and which form you have and which meds will help. In the end we need treatments and cures. I wish you all good health and strength to keep learning and helping each other.
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Caregiver for husband
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  #48  
Old Fri Apr 10, 2015, 09:54 AM
alyasa alyasa is offline
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Location: Polokwane, South Africa
Posts: 19
To him we belong

... and to him we return... and the best of you are those who are benefit to humanity.

Thank you so much Birgitta, you served us all so well. We will miss you. I was out of touch and missed this.

May you and your family know peace and have contentment.
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Alyasa, father aged 72, dx July 2014 RAEB-2, (10.5% blasts) on Vidaza, low WBC (<1)
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