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MDS Myelodysplastic syndromes

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  #1  
Old Thu May 16, 2013, 09:16 PM
MDSORANGE MDSORANGE is offline
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Just got news this week that I have MDS

wbc 2.9
platelets 114
neurophils between 800 and 900

I had it for 2 years but I didn't know till I got CBC done this month.

Its quite a shock to me because eitherwise I am healthy, no symptoms, lots of energy. I did stop taking glucosomine that I took for nearly 3 years.

I was reading some of these threads. Do I have to be concerned if I own a dog?

Any suggestion/advise/experience I would like to hear from a new kid on the block!
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  #2  
Old Thu May 16, 2013, 09:41 PM
Neil Cuadra Neil Cuadra is offline
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MDSORANGE,

Your low neutrophil count means you have moderate neutropenia, i.e., you are low on infection-fighting white cells. It's a good sign that you are asymptomatic (and didn't even know you had MDS) and overall healthy. Your counts are off the low end of the normal range, but aren't as dangerously low as some patients experience. Still, you need a doctor's advice about what to do.

It's reasonable for pet owners who are neutropenic to be concerned, since they should avoid common sources of infection and pets can be just such a source. But people facing an illness aren't going to feel comfortable/comforted/optimistic/positive/etc. if they have to banish "man's best friend" just when they need all the support they can get. What many people choose is a practical compromise, to enjoy the companionship of their dog but rely on frequent hand-washing and if possible have somebody else clean up after the dog so they don't have to.

There's a thread about pets for aplastic anemia patients here and the situation is basically the same. Remember that you can be at risk of infection either as a symptom of MDS or from treatment for MDS. Even a successful treatment (drugs or transplant) can leave your counts temporarily even lower than before, and the lower they are the more you have to be careful.
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  #3  
Old Fri May 17, 2013, 03:18 PM
sbk007 sbk007 is offline
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Quote:
Originally Posted by MDSORANGE View Post
wbc 2.9
platelets 114
neurophils between 800 and 900

I had it for 2 years but I didn't know till I got CBC done this month.

Its quite a shock to me because eitherwise I am healthy, no symptoms, lots of energy. I did stop taking glucosomine that I took for nearly 3 years.

I was reading some of these threads. Do I have to be concerned if I own a dog?

Any suggestion/advise/experience I would like to hear from a new kid on the block!
Sorry to hear. I was were you were about a month ago. I went for my yearly physical feeling fine, next day got a call from my doc, I told him to leave me alone but he was persistent so I knew I had to see a hematologist. and so here I am. You'll find in your reading that many cases come up during routine physicals. How do you know you have it for 2 years? , did you get a bone marrow biopsy and what were the results? WBC 2.9 if I'm not mistaking is close to range. Mine is 3.0 and considered normal. Platelets @ 114, is that 114,000?. Mine was initially 80,000 and for some unexplained reason came up to 1.3 or 130,000, I think 1.5 is in range. What was your Hemoglobin or RBC count. As your HG drops you might start feeling a bit dizzy, tired, unsteady. Some people acclimate to low HG but when a male hits 7 its usually noticeable. I have a dog, and she sheds but both my docs said not to give it a thought. Just don't smell the dog pooh when walking and you'll be fine don't give up the dog.
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  #4  
Old Fri May 17, 2013, 08:27 PM
Cam Cam is offline
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I was Diagnosed in September and had a bone marrow transplant in December 2012. I ran everyday right up until I had my BMT and then started again about 2 weeks after it. Mine was caught the same as yours, I felt fine and my wife had me get a physical. My HGBL came back then at 9.5 and that Dr. sent me to a hematologist and I had all kinds of tests until I had my marrow biopsy.. Which confirmed MDS. I then was sent to Mayo Hospital in Jacksonville. After I started there my HGBL dropped and I was getting transfusions until the BMT. I made it through the 100 days without much difficulty. After that I have been hit with one thing after another. Look at my posts to see about those. Ask me anything I will be honest with you...
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  #5  
Old Sat May 18, 2013, 05:05 PM
Dick S Dick S is offline
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Not to hijack this thread, but I have LOW Neutrophils and I don't know how to read them. I have Neuts in two places on my CBC:

1.) Neuts.....19.5.....%.....Range 40 - 77.
2.) Neuts.....0.72.....K/uL.....Range 1.8 - 7.8

I don't numbers like 800 and 900 anywhere in my CBC.
Should I be concerned. You can PM if you don't want to post here.
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Dick S, diagnosed Feb. 2008 with MDS. Last BMB April 2016. New diagnosis is CMML stage 1.

Last edited by Dick S : Sat May 18, 2013 at 09:22 PM.
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  #6  
Old Sat May 18, 2013, 10:44 PM
Cam Cam is offline
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What is your Absolute Neutrophil Count? That is the important one my Dr. worries about...
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Cam, BMT 12/6/12 for MDS, diagnosed August 2012 beat it in December 2012
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  #7  
Old Sat May 18, 2013, 11:51 PM
Hopeful Hopeful is offline
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Quote:
Originally Posted by Dick S View Post
Not to hijack this thread, but I have LOW Neutrophils and I don't know how to read them. I have Neuts in two places on my CBC:

1.) Neuts.....19.5.....%.....Range 40 - 77.
2.) Neuts.....0.72.....K/uL.....Range 1.8 - 7.8

I don't numbers like 800 and 900 anywhere in my CBC.
Should I be concerned. You can PM if you don't want to post here.
Hi Dick S,

I am guessing that .72 K/ul is your ANC by the reference range that you provided. .72K = 720.
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55 yo female, dx 9/08, AA/hypo-MDS, subclinical PNH, ATG/CsA 12/08, partial response. small trisomy 6 clone, low-dose cyclosporine dependent
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  #8  
Old Sun May 19, 2013, 08:34 AM
Dick S Dick S is offline
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Quote:
Originally Posted by Cam View Post
What is your Absolute Neutrophil Count? That is the important one my Dr. worries about...
They don't tell you. Just the two counts I showed you.
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Dick S, diagnosed Feb. 2008 with MDS. Last BMB April 2016. New diagnosis is CMML stage 1.
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  #9  
Old Sun May 19, 2013, 11:48 AM
Cam Cam is offline
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Did they tell you about Neutropenic precautions? If your ANC is below one then you need to really watch out for illness and infection. Also you need to look at your food intake. No lettuce; hotdogs, among other things... Get some medical masks to wear out in public...
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Cam, BMT 12/6/12 for MDS, diagnosed August 2012 beat it in December 2012
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  #10  
Old Sun May 19, 2013, 12:24 PM
Dick S Dick S is offline
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Quote:
Originally Posted by Cam View Post
Did they tell you about Neutropenic precautions? If your ANC is below one then you need to really watch out for illness and infection. Also you need to look at your food intake. No lettuce; hotdogs, among other things... Get some medical masks to wear out in public...
Cam, if you are responding to me, no they haven't told me a darn thing.
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  #11  
Old Sun May 19, 2013, 02:25 PM
Birgitta-A Birgitta-A is offline
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Low neutrophils

Hi Dick,
As Cam wrote it is very important to avoid infections when the neutrophils are low. Since I have had neutropenic fever twice since 2006 I control my temperature every evening.
Look at chapter 3 page 5 in this MDS info book: http://buildingblocksofhope.com/
Kind regards
Birgitta-A
74 yo, dx MDS Interm-1 2006. Positive results with Thalidomide + Prednisone since 2010.
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  #12  
Old Sun May 19, 2013, 03:08 PM
Dick S Dick S is offline
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Thanks all and I didn't mean to hijack the thread. I live in Florida and have had no colds or flu this season, but it's a good place with good clean air, no pollutions, only eat fresh meat and I don't go out in public much etc etc.
Maybe I've been lucky so far.
I'm going to pin down my Hema/Onc the next time I see him about what concerns I should have with the ANC, he's never mentioned it.
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