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MDS Myelodysplastic syndromes

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  #26  
Old Tue Aug 21, 2012, 01:20 PM
Neil Cuadra Neil Cuadra is offline
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hansi.s,

RAEB stands for "refractory anemia with excess blasts", which means she has too many immature blood cells (called blasts) and not enough mature blood cells.

If 7.7% was her hematocrit (the percentage of red cells in her blood) then that's extremely low. Her WBC (white blood cell count) was also very low. Her platelets were lower than normal although not as low as many MDS patients.

I'm glad she's getting treatment and hope she has minimal side effects and a positive response soon. The doctors monitor a lot more than blood counts, but blood counts are the most obvious measure for patients and family members to watch. Be prepared though: this disease can be a roller coaster of improvements and setbacks. With MDS drugs, blood counts often get worse at first before they start getting better. It's not a quick fix.

I'm surprised that the doctor avoided you. Sometimes doctors don't take the time they should to talk to family members, but perhaps you'd have better luck if your sister-in-law told her doctor that she wants you to be informed of her status, or if you can join your sister-in-law when she meets with the doctor.
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  #27  
Old Wed Aug 22, 2012, 05:36 PM
hansi.s hansi.s is offline
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Hi Neil, Thank you so much for your reply.

We are in UK, where as my sister-in-law is in India and hence the DRs in India are reluctant to speak.

Before Chemo, one time her blasts went up to 14%. She has been treated with Decitabine (Dacogen). We are waiting for further blood reports after the Chemo. She said that she is having side effects such as vomiting, tiredness, loss of appetite. she will be having her second course of chemo from 29th Aug.

I will keep you posted.

Best Regards
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  #28  
Old Thu Aug 23, 2012, 12:07 PM
Neil Cuadra Neil Cuadra is offline
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hansi.s,

It's too bad she's having the side effects, but at least they are "normal" (i.e., common) side effects and not life-threatening. I know that's easy for us to say, since we're not the ones suffering through it, but it helps to keep the big picture in mind, that overall progress and staying out of danger is what matters most.
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