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AA Aplastic anemia

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  #1  
Old Mon Feb 4, 2019, 02:39 AM
kubu kubu is offline
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Location: South Bay, Los Angeles
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Question Aplastic w/ 10% bone marrow and decent CBC?

13 months ago (Dec 2017) my neutrophils and WBC came back low from my annual physical. Doctor recommended a hematologist visit, which I did at UCLA.

The hema at UCLA totally blew it off. Basically saying nothing to worry about and if I am concerned, just get another CBC in a few months to be 100% certain.

Given how confident the hema was that it was a normal variance, I did not get CBC until my next physical one year later (Dec 2018). Here were those numbers, as well as prior years.

Neutrophils absolute
Dec 2018 1.01 [L]
Dec 2017 1.07 [L]
Dec 2016 2.13
Sep 2016 4.36
Dec 2015 7.05

WBC
Dec 2018 3.4 [L]
Dec 2017 3.8 [L]
Dec 2016 4.8
Sep 2016 7.1
Dec 2015 10.1

RBC
Dec 2018 4.17 [L]
Dec 2017 4.37
Dec 2016 4.68
Sep 2016 4.69
Dec 2015 4.59

HGB
Dec 2018 12.9 [L]
Dec 2017 13.8
Dec 2016 15.3
Sep 2016 14.9
Dec 2015 14.9

HCT
Dec 2018 38.5 [L]
Dec 2017 40.4
Dec 2016 48.2
Sep 2016 45.0
Dec 2015 47.1

I am 34 y/o male and very athletic (1.5-2 hours intense exercise 6 days/week). Therefore, the fatigue was something I definitely noticed. My primary referred me to a different hematologist and he was very concerned and ordered biopsy. Got results this past week and both pathologists who reviewed the results concurred:

Quote:
SEVERELY HYPOCELLULAR BONE MARROW (EST. 10%) WITH REDUCED TRILINEAGE HEMATOPOIESIS

The morphologic and immunophenotypic findings show marked decrease in normal hematopoietic elements. No apparent etiology is noted. There is no evidence of acute leukemia, significant dysplasia or a lymphoproliferative disorder. Overall the findings are compatible with severe aplastic anemia. Causes of aplasia such as medications, systemic/autoimmune disorders, toxic exposures, viral infections (including EBV and hepatitis), etc. should be considered in this patient. Clinical and genetic correlation is recommended (cytogenetics pending). Two other issues should be noted. First, there is an increase in plasma cells seen for patient of this age. These are not specific but increases are seen in chronic infections and autoimmune disorders. Second, the peripheral blood lacks Howell-Jolly bodies, nucleated red blood cells and significant anisopoikilocytosis of red blood cells. Given the history of splenectomy, these findings are unusual and suggest that the patient may have an accessory spleen.
With 10% marrow remaining, shouldn't my numbers be a lot worse? My platelets in Dec 2018 were 351 (150-450 being referenced normal range).

Ultimately my question is... how much longer should I expect until my life really goes down hill and these not good - albeit decent - CBC results really take a nosedive?
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  #2  
Old Mon Feb 4, 2019, 10:11 AM
Marlene Marlene is offline
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Marrow cellularity does not alway correlate to Peripheral blood counts. You can have low cellularity and normal counts, as well as normal cellularity and low counts. The most important reason for the biopsy is to rule out things like MDS and leukemia. SAA is a diagnosis of elimination. They should also check for genetic bone marrow diseases like fanconi's anemia or blackfan diamond anemia. I assume they have already checked for auto-immune issue.

Sometimes, they hit a dry pocket when doing the biopsy and don't get a good sample.

Your BM report says your spleen was removed. Do you think there's a connection to that and the drop in your counts?

Find out what your vitamin D, B12, copper, folate and iron are. You want your D and B12 to be at a optimal level. Low normals are suspect. Are you on any medication or taking anything else. Any digestive issues? Also, get your hormones checked. Get and keep copies of all lab test. You'd be surprised at what can get missed.

As far as timing goes, no one can really say. My husband's tanked in 9 months. Looks like yours has stabilized and may stay that way but I would pursue answers. There are others on this site who also live with lower than normal counts.
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Marlene, wife to John DX w/SAA April 2002, Stable partial remission; Treated with High Dose Cytoxan, Johns Hopkins, June 2002. Final phlebotomy 11/2016. As of January 2017, FE is 233, HGB 11.7, WBC 5.1/ANC 4.0, Plts 146K.
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  #3  
Old Mon Feb 4, 2019, 08:26 PM
kubu kubu is offline
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Thanks for providing a prompt and well thought reply. To answer some of your questions:

Vitamin B12, iron, vitamin D are all very healthy. Concurrently with the bone marrow biospy order, the hema ordered several blood tests - including those - and everything was good other than low testosterone (though still within "normal" range). Furthermore, I have never tested positive for any sort of nutritional deficiency before. Copper was not tested, though deficiency is unlikely given my diet and daily multi.

Medications; montelukast (Singulair) for asthma, retinol cream for skin, loratadine (Claritin) almost daily for allergies, diphenhydramine (Benadryl) for sleep.

Hema thought Fanconi and other genetically derived causes were not to blame, given my older age, as those tend to show themselves much earlier. Plus, I had normal CBCs up until relatively recently (early 30's).

Spleen was removed in 2003 following auto accident. Since it was 16 years ago, hema said not a factor. Though I agree with you it seems like it may affect progression of disease and possibly cause variances in how it goes down.

When your husband was diagnosed, do you remember appx what his CBC numbers were? Also, what his marrow percentage was at that time? If he was 9 months until tanking, I'm just trying to gauge if his timeline may or may not be similar.

Thanks!
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  #4  
Old Tue Feb 5, 2019, 01:05 PM
Marlene Marlene is offline
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John was 50 when he acquired SAA. I think his cellularity was at 25% but not 100% sure. Back then I didn't think to get copies of labs but I think it was at 25%. He had to have two BMB because the first was insufficient. John had some fluctuations in his counts over most of his adult life prior to SAA. His platelets usually stayed in the low-normal range and a couple of times, his HGB would drop to around 12 -13. But his doctors alway said it was his normal.

SAA 4/2002
--------------
WBC: 2.6
ANC: 1.1
HGB: 5.6
HCT: 15.8
PLT: 20

CBC 7/2001
-------------
WBC: 5.4
ANC: 3.9
HGB 15.0
HCT: 41.9
PLT: 142

Even though he was 50yrs old, Hopkins still tested for genetic/heredity causes. As strange as it sounds, it can still be a factor.

I'm sending you a private message with some other info for your consideration.
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Marlene, wife to John DX w/SAA April 2002, Stable partial remission; Treated with High Dose Cytoxan, Johns Hopkins, June 2002. Final phlebotomy 11/2016. As of January 2017, FE is 233, HGB 11.7, WBC 5.1/ANC 4.0, Plts 146K.
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  #5  
Old Tue Feb 5, 2019, 11:38 PM
Hopeful Hopeful is offline
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Hi Kubu,

Because your marrow is hypocellular, the doctors are probably trying to figure out whether the "marrow factory" is broken or whether something is attacking your marrow/cells (autoimmune).

Since your counts are holding, and the cells that are being produced are healthy, it seems like something could be destroying them. (I'm not an expert though. This is just my opinion.)

I thought the comment about an accessory spleen was interesting. I did a little google research, and it does say that people without spleens have Howell Jolly bodies in their peripheral blood. Since you don't, perhaps you do have an accessory spleen and perhaps it is inflamed and behaving badly (destroying blood cells), although it is odd that your platelets are still good. It may be interesting to get an ultrasound to learn more.

Also, there are some anecdotal reports linking Singulair to Aplastic Anemia (again from google research). So you may want to discuss this with your doctor. Also you may consider getting tested for Vitamin A toxicity, which can happen from retinol A.

I agree with Marlene that you should rule out the hereditary causes despite being "older than typical". Are you still waiting for the cytogenetic reports? Those could be very telling.
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52 yo female, dx 9/08, AA/hypo-MDS, subclinical PNH, ATG/CsA 12/08, partial response. Tried slow cyclosporine taper over 4+ years. Platelets fell, so back on cyclosporine. Trisomy 6 clone in 5% of cells.
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  #6  
Old Wed Feb 6, 2019, 11:48 AM
David M David M is offline
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Location: Fayetteville, TN
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Low Counts for a Long Time

Kubu,

As Marlene mentioned, some of us have lived for quite some time with hypocellular marrow and below normal blood counts. In my case, I first detected that I had low blood counts and corresponding hypocellular marrow back in the year 2000 -- about 19 years ago! Of course I was shocked at first, and I expected a counts crash to happen an any moment... but thankfully, it didn't in my case. We've been keeping an eye on it since then with quarterly CBCs (and a few bone marrow biopsies thru the years).

The good news is, I have not had to take any meds, have not had any transfusions, and have not needed to be hospitalized or treated in any way because of this. The bad news is, my counts have slowly trended downward over the years and really have not improved. (For a more complete description, see my "history" in the "Tell Your Story" forum on this web site, entitled "Slow-moving AA / Pancytopenia, or What?"). So, I have been in "watch and wait" mode for several years... which is not really that bad of a thing.

Others I have met on this site have had stable counts for several years until something caused a "crash" and treatment was required. Others, like me, have never experienced a crash. Several others with AA crash almost immediately and require treatment. We are all different... and I've always considered my case to be sort of an oddity on this site -- but there are a few with similar symptoms.

I wish you the best, and if I can ever help you in any way, please contact me!

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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  #7  
Old Wed Feb 6, 2019, 09:39 PM
kubu kubu is offline
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Agree on checking genetics regardless. I did take a glance at my raw genetic data for DNMT3A and ASXL1 last night. Those were mentioned in med journal requiring login for you to view so I can't post direct link, but if you access via Google search you should be able to see it or at least partial preview of article. Search those along with aplastic anemia. I will inquire during my appt with specialist next week.

Marlene, responded to your PM. As far as those numbers you posted here for your husband John... those are quite alarming how fast he progressed in 9 months. Going from 15 to 5.6 on HGB is shocking. Though from what I hear, SAA and VSAA really do cascade fast, once it gets going. It's the moderate cases that can coast along for a while without a nosedive, usually.

Hopeful
, I should find out soon enough on the accessory spleen, as I have the ultrasound for that tomorrow. Admittedly I only did a superficial search, but wasn't able to find info on montelukast and aplastic. Could you post or PM me with it please.

David, that's encouraging to hear about your pancytopenia. Per your comment I did search your posts and skimmed a couple, seeing this:
Quote:
I have had 3 bone marrow biopsy & aspirations through the years... The first one about 10 years ago showed me as hypocellular with ~25% cellularity ("normal" should have been ~64%).
I think that was posted 2009. So you started with 25% cellularity. When was your last reading and what was it?
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  #8  
Old Thu Feb 7, 2019, 11:16 AM
David M David M is offline
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Last BMB

My last Bone Marrow Biopsy was June 2009. Since then, things have been reasonably stable -- although my counts have still been low. So, the last word I have re: cellularity is 15-20%, and that was 10 years ago.
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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.

Last edited by David M : Thu Feb 7, 2019 at 02:53 PM.
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