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MDS Myelodysplastic syndromes

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  #1  
Old Wed Mar 4, 2015, 02:59 PM
Birgitta-A Birgitta-A is offline
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Location: Stockholm, Sweden
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Good bye Everybody

Good bye Everybody!
This will be my lasy post. Tomorrow I will leave for hospice.

Live as well as possible!
Warm regards
Birgitta-A
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  #2  
Old Wed Mar 4, 2015, 03:06 PM
Annettec Annettec is offline
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God bless you....
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  #3  
Old Wed Mar 4, 2015, 03:26 PM
triumphe64 triumphe64 is offline
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I am so sorry. You have been an inspiration to us all.
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Dallas, Texas - Age 81 - Pure Red Cell Aplasia began March 2005 - Tried IVIG - Then cyclosporine and prednisone. Then Danazol, was added. Then only Danazol . HG reached 16.3 March 2015. Taken off all meds. Facebook PRCA group https://www.facebook.com/groups/PureRedCellAplasia/
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  #4  
Old Wed Mar 4, 2015, 03:44 PM
Neil Cuadra Neil Cuadra is offline
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Birgitta,

I can't express how much I admire you, for being so incredibly supportive of everyone in our community, always sharing your medical knowledge and common sense wisdom. You've helped us understand what's happening to us, how to cope and hold our heads up high, and how to live a good life despite the burdens we each face. Your courage and dedication to both family and strangers has set a shining example for everyone else.

I'm sure many others here would agree.

May your journey be full of love and support from those around you.
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  #5  
Old Wed Mar 4, 2015, 04:22 PM
Marlene Marlene is offline
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It's been our fortune to have had you in our lives over the past 10+ years. You have been such a wonderful advocate for everyone here.

You will be missed. Much love to you during this time.
__________________
Marlene, wife to John DX w/SAA April 2002, Stable partial remission; Treated with High Dose Cytoxan, Johns Hopkins, June 2002. Final phlebotomy 11/2016. As of July 2021 HGB 12.0, WBC 4.70/ANC 3.85, Plts 110K.
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  #6  
Old Wed Mar 4, 2015, 04:36 PM
Sally C Sally C is offline
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Location: Chesterfield, Va.
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Dear Birgitta,
Words just don't do justice. Thank you so much for your constant giving of yourself and your vast knowledge. It has been a privilege to know you.
I wish you God's peace, grace, mercy and blessings on your journey. You are a very courageous soul.
God Bless,
Sally
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  #7  
Old Wed Mar 4, 2015, 06:43 PM
JordanN JordanN is offline
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Dear Birgitta,

My heart is breaking for you, your family, and all of us on the forums who have learned so much from you! You are the epitome of grace and dignity, and I thank you for all the knowledge, hope, and wisdom you have given to all of us! We will miss you so much but hope that you find peace and comfort in what lies ahead!
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  #8  
Old Wed Mar 4, 2015, 07:46 PM
PaulS PaulS is offline
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This is very sad news. Thank you for your kind and compassionate posts - I'm going to miss them and you. I pray you find peace and comfort. Paul
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Lower risk MDS diagnosed 2012. Recurring skin nodules treated with prednisone, otherwise watch and wait. HG dropped from 11.5 to 8.7. Kept going down to 5. Vidaza didn't work. BMT from MUD on September 10 2015
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  #9  
Old Wed Mar 4, 2015, 08:30 PM
slip up 2 slip up 2 is offline
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Birgitta....

Thank-you for teaching how to live & how to die.....I am in Anguilla a small gentle Caribbean Island that has many rainbows, I will be on the look-out for yours....Kate
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  #10  
Old Wed Mar 4, 2015, 08:36 PM
curlygirl curlygirl is offline
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Farewell, Birgitta, & best of luck to you!
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  #11  
Old Wed Mar 4, 2015, 09:08 PM
PamMc PamMc is offline
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Thank you for all you've done to help so many. You are in my prayers. Your words have inspired and touched. What a blessing you are.
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  #12  
Old Wed Mar 4, 2015, 09:24 PM
bailie bailie is offline
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Thank you Birgitta, everything you have done for so many of us will live on. I really appreciate all that you have offered. You are a very good person. Don't hesitate if you have anything more you want to say. We soak up your comments. Thank you.
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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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  #13  
Old Wed Mar 4, 2015, 09:57 PM
KMac KMac is offline
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Location: Golden, Colorado
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Birgitta,

You will be missed greatly here. You've contributed so much information and wisdom for all of us. The grace you carry yourself with is an inspiration to all.

May you find peace and solace in these days ahead with your family.
__________________
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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  #14  
Old Wed Mar 4, 2015, 10:59 PM
Mseth Mseth is offline
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Dear Birgitta,

Thank you for all your help and sharing your knowledge. You will be greatly missed.

Wish you peace!!
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Mother age 79, dx MDS RCMD low risk del 20q April 2013, no response to EPO, Danazol. pRBC tx dependent - 2 units every 3-4 weeks, exjade Dec 2013 - Mar2014, restarted Dec 2014
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  #15  
Old Wed Mar 4, 2015, 11:10 PM
Chirley Chirley is offline
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Goodbye Birgitta, I hope your final journey is a peaceful one. I will miss you very much.
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  #16  
Old Wed Mar 4, 2015, 11:35 PM
bebop bebop is offline
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oh hon! I pray for you. My heart just dropped. I have grown very fond of you over the last few years. Love you my friend!
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  #17  
Old Wed Mar 4, 2015, 11:36 PM
Cheryl C Cheryl C is offline
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Farewell, Birgitta. My heart is heavy. I will miss you so much.

I know your family will be close to you and surrounding you with an atmosphere filled with love, and I pray that you will experience the perfect peace which passes all understanding. God bless you and your family.
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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 Wed Mar 4, 2015, 11:46 PM
DanL DanL is offline
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Thank you for all that you are and have been to this forum and the members who have struggled through diagnosis and treatment. You are precious.
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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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  #19  
Old Thu Mar 5, 2015, 03:24 AM
Lifeguard Lifeguard is offline
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Birgitta,
Thank you for your advice and kindness. You have inspired so many and will be dearly missed. You are in my prayers.
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Diagnosed MDS Del 5q October 2007, blood transfusions 2010, commenced Revlimid 2010. Transfusion independent.
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  #20  
Old Thu Mar 5, 2015, 07:36 AM
Bhutt Bhutt is offline
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May god bless you. You are in our prayers.

Blair
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  #21  
Old Thu Mar 5, 2015, 11:47 AM
Whizbang Whizbang is offline
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Location: Central NJ
Posts: 299
So sorry!!

I am truly sorry to hear you have lost your battle with this horrible disease. Please be sure to give Dave a hug from me and his girls. Prayers to you and your family.
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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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  #22  
Old Thu Mar 5, 2015, 12:11 PM
riccd2001 riccd2001 is offline
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I share the thoughts and prayers of all members here who will miss your words of compassion and wisdom. Take care. Miss you already!
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Ric: Low-risk MDS (blasts <4%); 4 cycles Revlimid no positive response; PRBC transfusion dependent; so far, 392'units' over 8 3/4 years; BMB #4 (15/04/01) shows evolution to AML (blasts 20-30%) 47,XY,del(5) (q22q35),+21[24][cp24]/46,XY(1).
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  #23  
Old Thu Mar 5, 2015, 12:58 PM
tytd tytd is offline
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Dear Birgitta,
I have not posted for awhile but often read your posts. I just wanted to let you know as so many others have that you have tremendously helped me cope and live with this disease. You shared so much of your kindness, compassion and wisdom and I am very thankful for it. You are a great physician and I will miss you. Marie
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possible low to int-1 MDS with predominant thrombocytopenia, mild anemia, dx 7/08, in watch and wait mode
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  #24  
Old Thu Mar 5, 2015, 04:00 PM
kgtuck kgtuck is offline
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Location: Sylva & recently Waynesville, North Carolina USA
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Love to you, Birgitta

Love and peace to you and thank you for all your knowledge and wisdom!
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66 yr female;diag 6/09; MDS, unspecified, normal cytogenetics: blasts 10%; successful Dacogen;every 4th wk.; as of Aug.'12 changing to every 5th wk., stable at Hgb 12-14/platelets 200-300/wbc 2.-3.
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  #25  
Old Thu Mar 5, 2015, 07:06 PM
Bob Macfarlane Bob Macfarlane is offline
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Location: Soutwest Ranches, Florida
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Not good bye I hope

See you later.
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