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Tell Your Story Say hello or share your experiences

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  #1  
Old Sun May 10, 2009, 05:52 AM
Birgitta-A Birgitta-A is offline
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Birgitta Alexius' Personal Profile

You can read about me on my Personal Profile Page. This is the thread for comments about my profile page.
Kind regards
Birgitta-A
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  #2  
Old Sun May 10, 2009, 06:25 PM
launch launch is offline
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Birgitta,

I just read your story on your updated profile page. Thanks for sharing! Your family is Beautiful & the photo shows "Love"... in a portrait...

Will always keep you in my prayers... Cindy
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  #3  
Old Mon May 11, 2009, 02:24 PM
Birgitta-A Birgitta-A is offline
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Profile

Hi Cindy,
Thank you for your kind words ! You know I was flattered when Neil asked me to write my profile and I got much help since English isn't my first language. Good counts to you and all other members!
Kind regards
Birgitta-A
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  #4  
Old Tue Jul 28, 2009, 02:55 PM
Trudy2008 Trudy2008 is offline
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Profile

Brigitta,
Thank you for sharing your personal profile. I have also found your posts educational and helpful in my own situation, and I thank you for that as well.
Trudy
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  #5  
Old Thu Aug 27, 2009, 12:37 PM
Birgitta-A Birgitta-A is offline
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Late answer

Hi Trudy,
I am sorry that I didn't see your post till today . Your kind words are apprciated !
Kind regards
Birgitta
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  #6  
Old Sat May 17, 2014, 03:55 PM
Birgitta-A Birgitta-A is offline
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Update May 2014

Hi All,
I have updated my Personal Profile because more than three years have passed since the original version 2011. Now I am taking Revlimid and have a positive response.
Kind regards
Birgitta-A
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  #7  
Old Sat May 17, 2014, 10:58 PM
bailie bailie is offline
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Birgitta,

I am in my first cycle of Revlimid (Days 1-5 Vidaza, 6-19 Revlimid). It is my 6th cycle of Vidaza. Are you having any side effects? I seem to be tolerating the Revlimid well. I am taking the Revlimid solely in an attempt to decrease blast counts (currently 9-13 percent). The Vidaza really worked getting blood counts close to normal range.

I really appreciate the information you send our way. Thank you.
__________________
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 Sun May 18, 2014, 05:38 AM
Birgitta-A Birgitta-A is offline
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Vidaza + Revlimid

Hi bailie,
As you probably know you are getting one of the best drug combinations for MDS with a response rate of more than 70%.

Hope you will have a positive effect!

I got a deep venous thrombosis (DVT) in my left leg two months after I started to take Revlimid but I had asked for Prednisolone that increases the risk for DVT. DVT is not a common adverse effect in MDS patients taking Revlimid so i hoped I shouldn't get that adverse effect.
Kind regards
Birgitta
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  #9  
Old Thu Mar 19, 2015, 02:40 PM
Marrowforums Marrowforums is offline
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On March 4, 2015, Birgitta Alexius posted a Good bye Everybody thread for her many friends at Marrowforums.

She entered hospice care on March 5, 2015, and passed away peacefully in her sleep, in the presence of her family, on March 14, 2015.

Forum members are invited to share their comments in her Good bye Everybody thread.
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  #10  
Old Sat Mar 21, 2015, 12:25 AM
Chirley Chirley is offline
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Join Date: Oct 2007
Location: Logan City Australia
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On March 14 I raised my glass of champagne on my first day of cruise and toasted Birgitta, Jules and all those we have lost to these diseases. How fitting it was March 14.

I vowed to enjoy every day for them.
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  #11  
Old Sun Mar 22, 2015, 10:41 AM
Sue H. Sue H. is offline
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Good for you Chirley! I wish you all the very, very best.
How privileged we all were to have known Birgitta through these forums. What a great and inspirational person. Her memory will live on for sure. She touched so many people with her kindness and strength. May she rest in peace.
__________________
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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  #12  
Old Sat Mar 28, 2015, 12:40 AM
MaryS MaryS is offline
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Join Date: Nov 2013
Location: Herndon VA my father in New Orleans,La
Posts: 24
Was thinking about Brigitta tonight !!

Dear family,
My father pasted away March 12 from MDS/non Hodgkin's lymphoma.
He too also passed peaceful with my mom and I at his side.
I wrote your mother privately to tell her about my father and thank her
For her unwavering support for this community ,and bountiful gift of knowledge she shared. Thank you God for this amazing person and for all our friends here who are on this journey. I am thankful for her life, and her spirit.
Brigitta- you did an amazing job taking care of yourself. I hope you will find
My dad and tell him hello for me. Tell him who you are and how you helped me,
Stay strong and positive.
I will never forget you Brigitta . I have a little pain in my heart tonight, but happy that your suffering is no more.

Thank you for sharing your beautiful soul
Love,
Mary Gay Schmitz
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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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