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  #26  
Old Tue Mar 13, 2018, 09:46 AM
David M David M is offline
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Join Date: Sep 2009
Location: Fayetteville, TN
Posts: 51
And what about KatailS?

Thanks Cheryl C for the update! You know, sometimes "no change" is a good thing.

I am also curious about KatailS... her symptoms were in some ways very similar to mine, and I haven't seen an update from her in a while. KatailS, how are you???
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David M, reds/whites/platelets slowly declining since 2000; hypocellular bone marrow; diagnosed as unexplained pancytopenia / "non-typical" slow moving AA; still not at treatment-required levels, but getting there.
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  #27  
Old Tue Mar 13, 2018, 12:30 PM
KatailS KatailS is offline
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Join Date: Apr 2016
Location: Avon, CT
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Checking in . . .

Hi David!
Good to hear from you and to hear that you are fairly stable.... tho sorry to hear about the flu doubleheader. I am doing much the same. My numbers remain below ‘normal’, but pretty stable. I have my bloodwork every 3-4 months and get to visit with my hematologist. My next bloodwork is coming up in April.
My official label is moderate idiopathic aplastic anemia with a small PNH clone. I do have very short telomeres as well, but no genetic predisposition to my diagnosis. Been up to Dana Farber a couple times and am comfortable with the doctors there if I ever need them. No treatment, just a watch and wait. I am living my life and staying as healthy as I can by eating right and exercising. So, just like you.... same is good 😊
Keep in touch.... and keep living life to the fullest!
Kathie
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Kathie - 52 yr old mother of 4, pancytopenia since 11/2014, moderate AA 8/2016, small PNH clone, monitor bloodwork every three months
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  #28  
Old Tue Mar 13, 2018, 04:26 PM
David M David M is offline
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Location: Fayetteville, TN
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Glad to hear it!

KatailS,

Good to hear you are remaining stable! Sounds like you are making the best of it, and I intend to do the same! My next blood check is in April too... so, we'll see.

I do need to get back to doing some type of regular exercise though... Good to hear from you!

David M
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David M, reds/whites/platelets slowly declining since 2000; hypocellular bone marrow; diagnosed as unexplained pancytopenia / "non-typical" slow moving AA; still not at treatment-required levels, but getting there.
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  #29  
Old Tue Apr 17, 2018, 03:58 PM
KatailS KatailS is offline
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Join Date: Apr 2016
Location: Avon, CT
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April Update

Quote:
Originally Posted by David M View Post
KatailS,

Good to hear you are remaining stable! Sounds like you are making the best of it, and I intend to do the same! My next blood check is in April too... so, we'll see.

I do need to get back to doing some type of regular exercise though... Good to hear from you!

David M
Well the journey continues..... just got my latest bloodwork results and was thrilled to see my WBC finally tip into the ‘normal’ range for the first time in a few years. RBC remains below normal, but not bad (3.67). My MCV is still quite large (109.5) so even tho I have fewer red cells, they are getting the job done. My platelets are up to 122,000.... highest they have been in more than 4 years. I was very encouraged.... until I got the results of my PNH test. My monocytes clone has gone from .11 to 6.88 in the past year. Needless to say I am nervous and a bit deflated. Seeing my hematologist in a couple weeks.
Overall feeling okay.... suffering from major hot flashes (boy oh boy are they awful!) and even with the higher platelets I still find surprise bruises.
Hoping to hear a good update from David soon!
Kathie
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Kathie - 52 yr old mother of 4, pancytopenia since 11/2014, moderate AA 8/2016, small PNH clone, monitor bloodwork every three months
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  #30  
Old Wed Apr 18, 2018, 02:08 PM
David M David M is offline
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Join Date: Sep 2009
Location: Fayetteville, TN
Posts: 51
A Mixed Bag...

I am thankful that your counts are somewhat improved! That is always reason to celebrate! I know you are concerned about you PNH test results. It will be interesting to see what your Dr. says... waiting is one of the hardest things!

It is a little too early for my "yearly" report, but I did go to my local hematologist yesterday for a 6 month visit. Overall, counts were about the same. Oddly, my creatinine levels (which have always been on the upper limit) were above the upper limit some. Got to drink more water and reduce coffee (i.e. caffeine) intake... arrrgggggh. Other than that, pretty much the same. No new symptoms to report either! Could be better... but could be much, much worse. (So I am thankful!)

As you say, the journey continues... Keep us posted!!!
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David M, reds/whites/platelets slowly declining since 2000; hypocellular bone marrow; diagnosed as unexplained pancytopenia / "non-typical" slow moving AA; still not at treatment-required levels, but getting there.
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