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-   -   Just got news this week that I have MDS (http://forums.marrowforums.org/showthread.php?t=3664)

MDSORANGE Thu May 16, 2013 09:16 PM

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!

Neil Cuadra Thu May 16, 2013 09:41 PM

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.

sbk007 Fri May 17, 2013 03:18 PM

Quote:

Originally Posted by MDSORANGE (Post 28540)
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.

Cam Fri May 17, 2013 08:27 PM

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...

Dick S Sat May 18, 2013 05:05 PM

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.

Cam Sat May 18, 2013 10:44 PM

What is your Absolute Neutrophil Count? That is the important one my Dr. worries about...

Hopeful Sat May 18, 2013 11:51 PM

Quote:

Originally Posted by Dick S (Post 28563)
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.

Dick S Sun May 19, 2013 08:34 AM

Quote:

Originally Posted by Cam (Post 28568)
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.

Cam Sun May 19, 2013 11:48 AM

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...

Dick S Sun May 19, 2013 12:24 PM

Quote:

Originally Posted by Cam (Post 28575)
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. :(

Birgitta-A Sun May 19, 2013 02:25 PM

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.

Dick S Sun May 19, 2013 03:08 PM

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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