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MDS Myelodysplastic syndromes

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Old Mon May 24, 2010, 05:28 PM
Michellea Michellea is offline
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bone marrow biopsy and aspiration questions??????

Hello all, I am new here so please bare with me. I have read for days on this site and you all are SOOO educated. I was wondering if you could help me or give input.

I have had Severe Chronic Neutropenia for 5 years or more and was finally diagnosed 1yr and 7 months ago. They can't tell me why i have it. I have been on Neupogen since diagnosis and was doing well for a long time. For the last 4 months I am physically back where I was before I started the injections. I am tired and fatigued all the time, I am pale, my limbs feel heavy, I have horrible night sweats and dark circles under my eyes. I am do for an oncology visit June 14th.

My questions pertain to my blood work and biopsy BEFORE I began Neupogen. My thoughts go toward "maybe I am being treated solely for Neutropenia when it is something more."

Here is my info. from about 8 different CBC's
blood :Absolute Neutrophil count 0.4, Abs Monocytes Low, Abs Lymphocytes High, Abs Eos Low. Reds were normal

From 1 Bone Marrow biopsy: Neutrophil Bands Very High, Monocytes High, Lymphocytes Low, Left Shifted Myeloid Maturation, High M:E Ratio, Only 2% blasts, bone marrow was normocellular. The bone sample had prominent osteosclerosis. I had no chromosomal abnormalities.

I know this is not all of the information but I asked the doctor what all of this meant. She mentioned something about MDS and said we could talk about it when we crossed that bridge. Then reverted back t0 the SCN and taking Neupogen. Is the info above indicative of MDS? I can give exact numbers and additional info if you need them but I am not at home. I am so scared and fear that this is not just Neutropenia given my recent health. Any help will be much appreciated. Thank you for letting me post.

Michelle
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Old Tue May 25, 2010, 03:06 PM
lotusbud lotusbud is offline
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Hang in there Michellea, it is all very unsettling. Sometimes there are no easy answers... sometimes we have to wait for the answers.. certainly somebody here more knowledgeable can answer something. Meanwhile, take a deep breath. Would think many of these diagnoses need particular points, before they can be affirmed. Sometimes it is by exclusion... nothing else fits. Good luck. It is going to be OK!
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Old Tue May 25, 2010, 03:48 PM
Birgitta-A Birgitta-A is offline
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MDS

Hi Michelle,
You know when we get the dx MDS we have to have bone marrow dysplasia (mis-shaped bone marrow cells). In your report from the bone marrow biopsy they don't write anything about dysplasia.

There is a subgroup of MDS called Idiopathic Cytopenia of Undetermined Significance (ICUS). The patients should have dysplasia but can have very low count of only one celline for example neutrophils.

http://www.leukemia-net.org/content/...2009_02_19.doc

I don't think you have MDS since the most important diagnostic criteria (dysplasia) is missing. Your symptoms like fatigue, night sweats and osteosclerosis can be due to other diseases and it is good that you soon will have an oncology visit and be able to discuss your symptoms.
Kind regards
Birgitta-A
71 yo, dx MDS Interm-1 May 2006, transfusion dependent, Desferal and Exjade for iron overload, Neupogen 2 injections/week for low WBCs
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Old Tue May 25, 2010, 05:28 PM
Michellea Michellea is offline
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Thank you so much for your replies. It was very helpful and I appreciate you taking the time for me. Blessing to you all who are living with MDS.

Michelle
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Old Tue May 25, 2010, 09:49 PM
Gene_In_Va Gene_In_Va is offline
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Thumbs up bone marrow biopsy and aspiration questions??????

Hi Michelle,

I understand how frightening and confused you feel. I think everyone of us on this site have been right there more than once.

The lousy thing about MDS and it's cousin MPS are that they are syndromes and the assortment of conditions that make them up is hardly ever exactly the same from one of us to the next.

I hope your visit with the oncologist or hematologist goes well and the time till it happens passes quickly. It's the darned waiting that is one of the hardest things to tolerate with these bone marrow conditions.

Wishing you well,

Gene_In_Va
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Male age 64 Dx:RA Del(5q-) Intermediate -1. Dx'd 09/2009 Taking Revlimid 10 mg/day since 11/2009 - now tx independent and normal counts. 2nd BMB results from 5/15/2010: 6 of the 20 specimens now show normal cytogenics.
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Old Wed May 26, 2010, 02:51 PM
Michellea Michellea is offline
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Thank you, that is very kind. I am a bit worried but I know I won't be given any more than what I can handle. I am 37 years old and have been sick for almost nine. I read what all of you have been through and decided there will always be someone who is worse off and feeling sorry for myself isn't going to help. Anyway, thank you again!!
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