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MDS Myelodysplastic syndromes

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  #1  
Old Mon Jul 17, 2017, 07:45 PM
sheribaby sheribaby is offline
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Location: Hagerstown, MD
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MDS

Hi I am new to this diagnosis. The Dr gave me literature on MDS but can't be sure till biopsy of the marrow. I am 64 and am not ready for this. I can see I need to learn a lot about blood test. I am not sure I am willing to put myself through the bone marrow test. I am a big baby. I use to work in a major chemical plant for herbicides so I can very well believe what the blood test are telling my Dr. Is there anyone out there who hasn't had the bone marrow test? I just wanted to reach out. I just lost my husband 3 years ago and I am so sorry to be putting my kids through this. Not good with words. Thanks for listening.
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  #2  
Old Tue Jul 18, 2017, 11:49 AM
Hopeful Hopeful is offline
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Hi sheribaby,

You can't make an MDS diagnosis without a bone marrow biopsy. So, you will have to do it. It isn't that bad and is over quick. You can ask for sedation if you are really scared.

Many things can mimic MDS, like a vitamin or mineral deficiency. So it is important that your doctor runs a bunch of other blood tests to rule these out as well.

If you do have MDS, the results of the bone marrow biopsy will help your doctor define your treatment regimen, which could ultimately extend your life and the quality of that life.

Now's the time to be strong!
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58 yo female, dx 9/08, AA/hypo-MDS, subclinical PNH, ATG/CsA 12/08, partial response. small trisomy 6 clone, low-dose cyclosporine dependent
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  #3  
Old Wed Jul 19, 2017, 08:35 AM
sheribaby sheribaby is offline
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OK thanks will put on the big girl pants and get it done.
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  #4  
Old Wed Jul 19, 2017, 06:24 PM
Shazza Shazza is offline
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Smile

Ha ha good girl Keep us posted.
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Neutrophils fluctuating between 0.8 & 1.7 since 2000.
Hypoplastic bone marrow (10-15% cellularity).
No cytogenetic abnormalities.
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  #5  
Old Thu Jul 20, 2017, 05:56 PM
majorindy majorindy is offline
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Bone Marrow Biopsy

I had one done two months ago. The nurse described what I would feel and she was correct. Initial quick needle inseration that felt like a bee sting. Pain Went away in about 10 seconds. After that I felt nothing. I was awake through the entire procedure which took about 20 minutes. Piece of cake - I'm 69 years old.
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  #6  
Old Sat Jul 22, 2017, 10:13 PM
Cheryl C Cheryl C is offline
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Sheribaby - it's the only way you will truly know what's going on in your marrow and mostly it's quite tolerable. Knowledge is power!
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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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