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MDS Myelodysplastic syndromes

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  #1  
Old Wed Nov 1, 2017, 01:43 AM
ritu ritu is offline
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Need Advise MDS RAEB-2

Hi

My mom has been diagnosed with MDS REEB-2 last month and had her first cycle of Vidaza and one unit blood transfusion. Her nos climbed up after treatment but WBC are still low. She has been facing problems with breathing. Docs have got all the test done it is nothing related to lungs or Heart. But she is very uncomfortable due to this. Any idea why is it happening. Too worried for her I dont know how to proceed from here

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  #2  
Old Wed Nov 1, 2017, 08:59 AM
Sue&Dave Sue&Dave is offline
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Hi Ritu - Welcome and I'm sorry to hear of your mom's diagnosis. This is an insidious disease, that keeps us on our toes at all times. As I am sure you have heard, when starting Vidaza many times the counts will go down before they go up - so the good news is that your moms all went up after the first round - except for the whites, which isn't unusual. Going into Round 11, my husband's counts are all back to normal - except for the whites.
As far at the breathing problems, it could be just related to the disease itself and hopefully if she continues to respond to the Vidaza the breathing problem will resolve itself. My husband only had 6% blasts when he started his first round of Vidaza, but his symptoms were so significant, trouble breathing, couldn't walk more than 10 steps, fevers, etc. that he was hospitalized for a week trying to get to the bottom of everything. When everything else was ruled out, they figured his symptoms were just a result of the disease making itself heard. How old is your mom? Have they discussed transplant at all?
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Old Thu Nov 2, 2017, 01:10 AM
ritu ritu is offline
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Need Advise MDS RAEB-2

Hi Sue
Thanks for your reply my Mom has turned 64 yesterday. They have discussed transplant and we are getting necessary test done. But I am worried with after transplant period. I am just wondering if we can continue with medication for how long. If she responds well.
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Ritu
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  #4  
Old Thu Nov 9, 2017, 07:18 AM
ritu ritu is offline
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Mom diagnosed with MDS

Hi

My mom TLC came down to 1 today too scared, i dont know what to do. Is Vidaza not working. She is due for her second round on 11th Nov. Heamoglobin is 9.30 and RBC is 2.74.
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  #5  
Old Sun Nov 12, 2017, 11:46 AM
DaveAvl DaveAvl is offline
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Hi Ritu -

We were told that it would take at least four months to know if the Vidaza was working or not. From reading a lot of other posts here, I have seen blood numbers that look plenty scary, yet the patients are still able to continue on with treatment. There may not be much comfort in hearing that, but it shows that very low numbers are survivable...

Take care - Dave
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Dave age 69, husband of Alan age 67 who is a 25-year HIV survivor and was dx with MDS RAEB-1 5/24/17. Vidaza started 8/7/17.
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  #6  
Old Mon Nov 13, 2017, 01:14 AM
ritu ritu is offline
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Hi Dave

Thanks for your reply her second cycle was put on hold for one week to see if WBC come up a bit. So keeping finger crossed. Her HB and platelets are fine as of now. Only the WBC is a concern.
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