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MDS Myelodysplastic syndromes

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  #1  
Old Tue Dec 20, 2016, 09:24 PM
Itchycrystal Itchycrystal is offline
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Bmb #2 results tomorrow. Insight needed please. New here

Hello, I am new and have been neutropenic and leukopenic (mild to severe) for a little over two years now.

I am desperate for answers and when this all firsr started, I was asymptomatic except tired and exhausted with low wbcs and abs. Neutrophils
I had a bmb that was "inconclusive" due to inability to determine if there was fibrosis.

So I just hung out from (June 15` til July 16`) when I started having itchiness with random petechai and bruising. Some were large. Others small. Every ott, platelet test, etc has been fine...and it has progressed to unbearable itching, losing weight and feeling full...heart burn? Shortness of breath and chest pain.

Again rbc is normal but I am not sure about my irom stores? I recently had a new bmb as I was bruising and itching so much...

I go tomorrow morning for results but from what I can see, everything was normal except that they did not make a final diagnosis because my karyotype study was and is still pending...(it's been a MONTH) and the found " rare interstitial lymphoid aggregate in the bone marrow."

But, it doesn't look like it was tested to see if it was cancerous...

Should I be worried? I dont want to be shrugged off if I should/the Dr's should be concerned. Oh, and they said in my report that in addition to the pending karyotype, they "extracted my DNA AND RNA from my bone marrow and stored it at a lab for future testing"

Why would they do that??-I didn't ask for that and what is interstitial lymphoid aggregate exactly? A cluster of cells? Polyps? Tumors??

Help!! Thank you xx and also, all rhemotological tests have been negative...multiple times.
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  #2  
Old Tue Dec 20, 2016, 10:15 PM
Neil Cuadra Neil Cuadra is offline
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Itchycrystal,

Don't be shy about asking the doctor any of these questions. Doctors can't guess how much you want to know or how much you'll understand, but when you ask them questions it's their job to give you explanations in words you'll understand. It helps if you learn some of the terminology and meet them halfway.

I don't think you should ignore these symptoms. It's surprising to hear that you have a normal RBC count since shortness of breath is often a sign of low hemoglobin, but other factors could be at play. Certainly your low platelets explain the petechia and bruising, but of course you want to know what explains the low platelets.

Unfortunately, it's not unusual for a bone marrow biopsy to be inconclusive, because evaluation depends on the sample they get.

A lymphoid aggregate is a cluster of immune cells. From what I've read, interstitial lymphoid aggregates are indeed rare, showing up in only 1% to 2% of bone marrow biopsies, and lymphoid aggregates can be either benign or malignant. It's hard to tell which is the case without more tests. Lymphoid aggregates are sometimes associated with immune thrombocytopenic purpura (ITP) but also with infections and other health conditions. Interstitial means "between other cells", and is just one of the clues to what's going on.

The karyotype results should help with your diagnosis. It's too bad those don't come back quickly like blood test results.

You asked if you should be worried. I would be. But I don't recommend sitting at home and worrying since that won't help anything. Instead, I suggest that you make a list of questions for the doctor and read what you can to learn more about what you are hearing.

I doubt there was anything unusual going on with your tissue being "stored in a lab for future testing". I'd think it's either what they also do when a trained analyst examines your bone marrow biopsy results in the lab, or part of their routine research. If it's a special study of some kind, they should have asked you if you volunteer to be a participant.
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  #3  
Old Tue Dec 20, 2016, 11:06 PM
Itchycrystal Itchycrystal is offline
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Flow cymetry...how do I interpret this?

29,607

Antigen+.......... Usual Specificity........................... %Tot. Events

Dim CD45+ ........ Blasts, Hematogones, Basophils, Other .......... 2
Bright CD45+ ..... Lymphoid ....................................... 16
CD34+ ............ Blasts/Hematogones ............................. 1
CD117+ ........... Immature, mast cells ........................... 1
CD14+ ............ Monocytic ...................................... 3
Dim CD45/highSSC . Granulocytes ................................... 77

P1 Average # Events 5,452
P1 Average % Total. 18

-------------------------------- B Cells ------------------ P1

Antigen+ ....................... Usual Specificity ........... % Positive

Kappa+ / CD19+ (8-color) ........ B-cells .................. 2
Lambda+ / CD19+ (8-color) ....... B-cells .................. 2
Kappa:Lambda ratio (8-color) .... B-cells .................. 1.2
CD19+ (all +/- CD5) (8-color) ... B-cells .................. 6
CD20+ (all +/- CD10) (8-color) .. B-cells .................. 4
CD10+ (all +/- CD20) (8-color) .. B-cells .................. 1
CD20+ / CD10+ (8-color) ......... B-cells .................. 0
CD19+ / CD5+ (8-color) .......... B-cells .................. 0


-------------------------------- T-/NK Cells --------------- P1

Antigen+ ....................... Usual Specificity ........... % Positive

CD3 (all +/- CD7) (8-color) ..... T-cell ................... 72
CD5+ / CD19-(8-color B-cell) .... T-cell ................... 70
CD3+ / CD2+ (8-color) ........... T-cell ................... 71
CD3+ / CD7+ (8-color) ........... T-cell ................... 68
CD3+ / CD4+ (8-color) ........... T-cell ................... 38
CD3+ / CD8+ (8-color) ........... T-cell ................... 28
CD4+:CD8 ratio (8-color) ........ T-cell ................... 1.4
CD3+ / CD16&CD57+ (8-color) ..... T-/NK-cell ............... 3
CD3+ / CD56+ (8-color) .......... T-/NK-cell ............... 5
CD2+ (all +/- CD3) (8-color) .... T-/NK-cell ............... 83
CD7+ (all +/- CD3) (8-color) .... T-/NK-cell ............... 83
CD3- / CD2+ (8-color) ........... T-/NK-cell ............... 12
CD3- / CD7+ (8-color) ........... T-/NK-cell ............... 14
CD3- / CD16&CD57+ (8-color) ..... T-/NK-cell ............... 12
CD3- / CD56+ (8-color) .......... T-/NK-cell ............... 13
CD4+ / CD16&CD57+ (8-color) ..... T-/NK-cell ............... 0

------------------------------- Myeloid/Monocyte/Other ----- P1

Antigen+ ....................... Usual Specificity ........... % Positive

CD13&33+/CD7+ ................... Aberrant ................. 1
CD13&33+/CD19+ .................. Aberrant ................. 0
CD13&33+/CD56+ .................. Aberrant ................. 1


Tube Name(s)
CD16&57/CD7/CD4/CD3/CD56/CD8/CD2/CD45
CD7/CD13&33/CD19/CD56
K/L/CD5/CD19/CD10/CD38/CD20/CD45
CD36/CD123/CD64/CD33/CD34/CD14/HLA-Dr/CD45
CD15/CD56/CD117/CD13/CD11b/CD16/HLA-Dr/CD4
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  #4  
Old Wed Dec 21, 2016, 12:41 PM
Neil Cuadra Neil Cuadra is offline
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Itchycrystal,

Sorry, but I don't know how to read a flow cytometry report.
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  #5  
Old Fri Dec 23, 2016, 08:30 PM
Itchycrystal Itchycrystal is offline
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Update

I was told my kartotype was normal and that everyone has lymphoid aggregate in the bone marrow...?? And so I am back to square one.

Does anyone know if bone marrow normally contains lymphoid aggregates?
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