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MDS Myelodysplastic syndromes

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  #1  
Old Wed Jun 7, 2017, 02:00 AM
Cheryl C Cheryl C is offline
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Location: Lake Macquarie, Australia
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How are you Bailie?

I don't remember seeing any recent posts from you, Bailie? How are you?
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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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  #2  
Old Wed Jun 7, 2017, 11:12 AM
bailie bailie is offline
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Cheryl, I will be getting a DLI (Donor Leukocyte Infusion) this week. I relapsed in early April with AML. I am feeling tired but otherwise fine.
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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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  #3  
Old Wed Jun 7, 2017, 09:58 PM
Cheryl C Cheryl C is offline
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All the very best for your DLI, Bailie. I hope this wipes out the AML for you. Your positive attitude is in your favour and thanks for all the help and encouragement you give to we forum members.
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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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  #4  
Old Fri Jun 9, 2017, 11:33 AM
Bossywife Bossywife is offline
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I was wondering where you were too. Will keep you in my thougts and send positive vibes your way
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Husband (61) dx RAEB1 Apr 2015 after long term bad CBCs (first discovered Apr 2008 after an unknown infection had him hospitalized), currently on watch & wait with monthly bloodwork. Myeloid Gene Panel testing done Aug 2017, showed nothing worrisome. CEBPA mutation
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  #5  
Old Sat Jun 24, 2017, 10:56 PM
maggiemag maggiemag is offline
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Bailie, I think it's been a few weeks since we've heard from you about your progress. How are you doing with your DLI? Praying for good news.
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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  #6  
Old Sun Jun 25, 2017, 11:51 AM
bailie bailie is offline
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Mags, so far the DLI is not causing anything noticeable. That can be good or bad. We will see at the BMB in about ten days. I do feel some hip pain which likely could be the marrow working overtime. Still feel a little weak.

Thank you for the support.
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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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  #7  
Old Mon Jun 26, 2017, 06:59 AM
Cheryl C Cheryl C is offline
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Join Date: Dec 2011
Location: Lake Macquarie, Australia
Posts: 843
Thinking of you, Bailie.
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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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  #8  
Old Sun Jul 2, 2017, 04:29 PM
Dick S Dick S is offline
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Join Date: Jan 2008
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Hang in there my friend. We are all pulling for you.
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Dick S, diagnosed Feb. 2008 with MDS. Last BMB April 2016. New diagnosis is CMML stage 1.
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  #9  
Old Sun Jul 2, 2017, 04:57 PM
bailie bailie is offline
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Dick, good to hear from you. I feel like I am just "hangin in there". Still waiting for that turn around day. Numbers are fine, but I am weak.
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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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