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MDS Myelodysplastic syndromes

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Old Sat Mar 8, 2014, 02:47 PM
surabhi surabhi is offline
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Join Date: Feb 2012
Location: Delhi, India
Posts: 7
Question Things getting worse after 6 chemo sessions

Hello,

My mom was diagnosed with MDS three years back which progressed to RAEB II. She was given Decitabine and post her first chemo she got severe Tuberculosis and could get the next chemo until around a year back. She also got a fistula opening in her throat and was fed using a pipe for about 6 months. In the last less than a year, she has undergone 6 decitabine chemo sessions and her TB medicine is still on but close to completion.

Her CECT scan is due this Monday and her Serum cretanin counts are low and so is her blood urea. Her recent ultrasound shows both her kidneys as "increased cortical echogenicity , poor preservation of CMD, PCS is compact".

I do not know what that means but all I could get so far is that its not good. The area on her back after the bone marrow sample was taken is all black and weird, its been over a week now and it should be fine. Her aspirate report after so many chemo sessions shows RAEB-I with 9% blasts with DLC show around 4% of type 2 blasts. No auer rods seen.

I am worried for my mom and scared too. I want her to come of of this soon, she has suffered a lot already and she doesn't look good. After these many chemo sessions we were hoping to hear something nice but this doesn't sound nice to me. Can someone explain what all this means for her and what is the prognosis like?

Thank you very much for your help and understanding.
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Old Tue Mar 11, 2014, 10:17 AM
Mseth Mseth is offline
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Join Date: Sep 2013
Location: New Delhi, India
Posts: 186
Delhi

Hi Surabhi,

I'm sorry that your mother is facing problem. I am in Delhi as well. Have sent you a pm, hope you received it. I hope forum members will be able to help you with your questions, i have limited knowledge on decitabine and its effects.
If you need any support locally, I'll be happy to be of help.
Take care of your mom & yourself.
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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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