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Old Fri Jul 19, 2019, 08:58 PM
David M David M is offline
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Join Date: Sep 2009
Location: Fayetteville, TN
Posts: 89
Yearly Update 2019

Hello All,

It is time once again for a yearly update! Thankfully, things this year have continued to be "amazingly stable" -- at least that is what my hematologist at Vanderbilt said.

Below are counts from my last 4 CBCs... (10/17/18, 3/18/19, 7/9/19, 7/17/19):
RBC: 2.75...2.69...2.61.... 2.78
WBC: 3.4...3.7...3.1... 3.4
Lymph #: 1.3...1.4...1.25.... 1.6
Lymph %: 39.7...37.2...40.6.... 40.4
Neut #: 1.35...1.52...1.19.... 1.4
Neut %: 40.3...40.6... 38.7... 34.8
Hgb: 10.2...10.0...9.6.... 10.2
HCT: 30.8...29.8... 29.0... 30.6
Platelet: 40...57...55.... 58

In fact, my counts have been low -- but stable -- since 2009. I asked him about the "rareness" of this type of stability... he said something like, "Well, think about it this way -- about 1 in 1 million people get AA... and of the 80 or so AA patients I am currently seeing, I have 2 or 3 who have stable counts like this." That ratio sounds about right to me -- I have met some of them on MarrowForums as well, but we are the exception and not the rule when it comes to AA.

In the past year, I have not been getting more frequent infections and have not been experiencing any abnormal bruising. Two years ago, I got the flu twice, but in this past year, I did not get the flu at all. I do seem to have a little less stamina than I used to -- a noticeable decrease. But generally, when I get tired, I rest for a while and then continue on with whatever I was trying to do.

One interesting thing happened during this past year with some genetic testing (at least I thought it was interesting). I had a cousin living in a distant state who was diagnosed with Stage 4 breast cancer. Her doctors had her tested for the BRCA2 mutation, and she tested positive. (Being positive for BRCA2 does not mean a person will absolutely get cancer, but it heightens the risk.) This mutation runs in families -- i.e. if a parent has it, there is a 50% chance each child could have it. It seemed obvious to us that it came through my cousin's mother -- my mother's sister. My mother was tested -- and she also was positive for BRCA2. However, I tested negative for it. From the little research I did on it, there is some relationship with Fanconi Anemia and BRCA2 -- but I think it has to be present in both parents or something... and this type of anemia almost always manifests itself in children. I thought maybe this would be the "smoking gun" of why my counts are low... but apparently not! Still, the whole episode was interesting. My sister also tested negative, and my brother is soon to be tested. Interesting, but mostly irrelevant to my status.

One more thing I'll mention, since I'm here... I recently asked my hematologist what he would do if he were in my place. He remarked that since my counts are low, but stable, it did not seem reasonable given my current levels to try any medical procedures or meds to try and boost counts, etc. That seemed reasonable to me. But what I did not hear from him (nor have I really heard it from any of my hematologists through the years) are recommendations to do common sense things, like: (1) drink X amount of water every day; (2) eat "this or that" type of foods that are rich in things needed by the bone marrow; (3) take this supplement or that supplement; (4) exercise... blah blah blah. It seems like all of these "common sense" things are very important, but I don't recall hearing any of my doctors encourage any of them! Not complaining, just always surprised, I guess.

Well, that is enough for now. I am always thankful for this forum. I do feel like I am not alone. I know we all have different struggles, but it is nice to have a place to "go" where we can share with each other and encourage each other along the way.

Until next time,
David M
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David M, reds/whites/plats slowly declining since 2000; hypo-cellular bone marrow; diagnosed Mild AA; low counts, but stable since 2009; watch and wait -- no treatments required to this point.
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