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MDS Myelodysplastic syndromes

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  #1  
Old Fri Jan 9, 2015, 03:52 PM
MissyJ MissyJ is offline
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Newly Diagnosed Parent

Hi all, Im new to the forum and hope someone can help. My father just spent 14 days in the hospital and was diagnosed with MDS. They took bone marrow biopsy and there is no conclusion as to what category he fits in. He is transfusion dependent every 4-5 days for platelets and every 5-10 days for RBC. No other medication is being administered at this point. My question is what is normal for transfusions, I know people are different but what my father is going thru seems like a lot to me. He is not a candidate for bone marrow transplant (edited). Can anyone shed any light?

Thanks

Last edited by MissyJ : Fri Jan 9, 2015 at 05:49 PM.
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  #2  
Old Fri Jan 9, 2015, 04:16 PM
bailie bailie is offline
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Very sorry for the diagnosis. The BMB results will "shed some light" on the situation. There are so many variables with MDS. How long has Dad been needing transfusions? Does he have other health problems? Age is also a consideration.

This forum will be helpful for any questions you might have. The more information you can present the better the answers you will get.

I wish your father 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.
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Old Fri Jan 9, 2015, 05:04 PM
riccd2001 riccd2001 is offline
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Be his record-keeper too...

One of the most useful things you can do for/with him is to keep an ongoing record of the details of all transfusions - temps, blood pressures, donated date, volume, pre-meds, reactions if any, CBCs etc.
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Ric: Low-risk MDS (blasts <4%); 4 cycles Revlimid no positive response; PRBC transfusion dependent; so far, 392'units' over 8 3/4 years; BMB #4 (15/04/01) shows evolution to AML (blasts 20-30%) 47,XY,del(5) (q22q35),+21[24][cp24]/46,XY(1).
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Old Fri Jan 9, 2015, 05:18 PM
MissyJ MissyJ is offline
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bailie - Dad has been transfusion dependent now since 12/20/14. He has a laundry list of health issues - Diabetes, High Blood Pressure, Atrial Fibrillation, Plural Edema and is 75 years old. His last transfusion was on 1/6/15, he was sitting at 10 for platelet count and he rec one bag of platelets. We went back to dr yesterday and he was only at 12 on platelet count, Hemoglobin at 10.

riccd2001 - Thank you I have a detailed list started already for everything, so we have check points.
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Old Fri Jan 9, 2015, 05:42 PM
bebop bebop is offline
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why is he not a candidate for bmb? I thought that was the only true way to get mds dx. my dad was on a lot of transfusions as well. prayers for you and your dad.
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  #6  
Old Fri Jan 9, 2015, 05:48 PM
MissyJ MissyJ is offline
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Sorry bebop - I meant transplant...No Bone marrow transplant.
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Old Sat Jan 10, 2015, 02:10 AM
bebop bebop is offline
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oh ok hon. My dad didn't either. I am here for you any time!

Elaine
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  #8  
Old Sat Jan 10, 2015, 10:52 AM
Mseth Mseth is offline
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Hi MissyJ,

Sorry that your Dad has MDS. My mother's diagnosis happened in April 2013, almost 2 years now, she is red cell transfusion dependent since diagnosis. We had never heard of MDS and it took long to come to terms with it. Like your Dad, she too is not a candidate for transplant, given her age, and that we are in India. Though we have never discussed in detail, transplants are done in India only upto 50 years of age, I think.

After transfusion she feels fine and is able to manage all household chores independently. The world outside can never know she receives 'blood' regularly, unless they are told. Of course, the patient and caregiver has to come to terms with frequent hospital visits.

After diagnosis, the usual treatment protocol was tried, EPO which helps several people increase their Hb did nothing for her. Depending on your Dad's type of MDS and risk category, you will receive some treatment options, or the option of supportive care, which essentially means transfusions as and when required.

Hope things will be better for your Dad and you as you go along.
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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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