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MDS Myelodysplastic syndromes

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  #1  
Old Wed Jul 29, 2015, 10:16 AM
Data Data is offline
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In the VA Hospital in Gainesville

I had been feeling achy all over and running a low fever. On Friday the hematology clinic told me to come to the ER. They were waiting on me in the ER. They admitted me Friday night and I have been here every since. My platelets and neutrophils continue to go down and the fever has gone up. The achy feeling is worse than when I got here. They are trying to figure out what the problem is but no luck so. I have had antibiotics almost non stop. Hope they figure this out soon!

Gotta give the VA hospital kudos. Everone here has been great and the rooms are private. (Still want to leave ASAP ).
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Prostate Cancer: Treated in early 2013 with HDR Brachytherapy. MDS-RCMD: Oct 2014. Biopsies: 46,XY,t(7;18)[2]: 46,XY,del(7)( q22)[3]: 45,XY,-7[6]: 45,XY,-7[10]: 45,XY,-7[13]. HSCT in April 2016.
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Old Wed Jul 29, 2015, 01:24 PM
traceyn11 traceyn11 is offline
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So sorry to hear that Data! I just got home from 11 days in the hospital - fungal pneumonia, so I feel for you. Glad everyone is treating you well though. Hope they figure it out soon so you can go home.
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Tracey, mom & wife,age 58, dx MDS RAEB-2 4/15, normal cytogenetics, Update: SCT cancelled. Blasts at 67%. New dx AML.
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Old Wed Jul 29, 2015, 10:25 PM
bailie bailie is offline
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I am wondering if they have the expertise for MDS? Hopefully they do. I wish you the best.
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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.

Last edited by bailie : Wed Jul 29, 2015 at 10:54 PM.
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  #4  
Old Thu Jul 30, 2015, 03:53 AM
JordanN JordanN is offline
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Hi, Data!

I'm so sorry to hear that you are not feeling well! I hope they figure out what is going on soon and that you can go home quickly! I'm glad the hospital is treating you well! You are in my thoughts for a speedy recovery!
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  #5  
Old Thu Jul 30, 2015, 12:50 PM
Data Data is offline
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Thanks all

Thanks everyone for the comments.

The VA hospital here has several doctors from the University of Florida that work in the hematology / Oncology department. UF Health (Shands Hospital) is listed as one of the centers of excellence for MDS.

Neutrophils are above 1, platelets are at 25.

Cheers

Data
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Prostate Cancer: Treated in early 2013 with HDR Brachytherapy. MDS-RCMD: Oct 2014. Biopsies: 46,XY,t(7;18)[2]: 46,XY,del(7)( q22)[3]: 45,XY,-7[6]: 45,XY,-7[10]: 45,XY,-7[13]. HSCT in April 2016.
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  #6  
Old Tue Aug 4, 2015, 08:56 PM
Data Data is offline
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Smile Discharged

Well I was discharged today. They took me off antibiotics for 24 hours and the fever never returned. The docs never did confirm what was causing the fever but they did get rid of it.

Hb=8.3; ANC=0.7; and Platelets are at 30.

Glad to be home!!

Cheers

Data
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Prostate Cancer: Treated in early 2013 with HDR Brachytherapy. MDS-RCMD: Oct 2014. Biopsies: 46,XY,t(7;18)[2]: 46,XY,del(7)( q22)[3]: 45,XY,-7[6]: 45,XY,-7[10]: 45,XY,-7[13]. HSCT in April 2016.
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Old Tue Aug 4, 2015, 11:31 PM
traceyn11 traceyn11 is offline
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Yay!

Glad you are home!
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Tracey, mom & wife,age 58, dx MDS RAEB-2 4/15, normal cytogenetics, Update: SCT cancelled. Blasts at 67%. New dx AML.
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  #8  
Old Thu Aug 6, 2015, 12:30 AM
Cheryl C Cheryl C is offline
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Great news Data!
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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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  #9  
Old Sun Aug 9, 2015, 09:29 AM
Data Data is offline
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Thumbs up Thanks

Thanks for all the positive comments and thoughts. They never did find the reason for the fever but did manage to get rid of it. The folks at the VA Hospital in Gainesville, FL were great.

Cheers

Data
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Prostate Cancer: Treated in early 2013 with HDR Brachytherapy. MDS-RCMD: Oct 2014. Biopsies: 46,XY,t(7;18)[2]: 46,XY,del(7)( q22)[3]: 45,XY,-7[6]: 45,XY,-7[10]: 45,XY,-7[13]. HSCT in April 2016.
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