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MDS Myelodysplastic syndromes

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  #1  
Old Mon Dec 15, 2014, 12:22 PM
PamMc PamMc is offline
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New Watch and Wait

I just found this forum last night. I have had consistently low platelets for 18 years that I know of. I am 54 now. My white cells have been up and down over the years, but mostly normal. I am followed yearly by an oncologist/hematologist. It used to be more frequent, but I talked him into seeing me yearly. Why go more often when counts stay close to the same? He agreed.

For the last five years, things have been changing. Platelets gradually getting lower after hanging in the upper 110-120 range with a high MPV. Now after 2 visits to my primary physician for other issues, I find my platelets are staying in the 80's. In addition my white blood cells have dropped from 3.3 to normal down to 2.9. Something else new is my granulytes have decided to go below normal too. My RBC, HGB, and HCT are all on the border of going below normal too.

I am not really freaked out by this or anything since I have been watching this for so long. I have a peace about it and won't let go of that. I am curious about something. With my white cells going below normal now, and with the GRAN, which I know includes neutrophils going below normal too, do I need to be avoiding being around people with all the flu and virus stuff going around?

At this for a while, but still am learning, especially with the new changes taking place. I also want to let you know I read nearly all the posts through 2012 last night. You are all in my prayers. I can say, reading your posts was helpful to me. Thank you.
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Old Mon Dec 15, 2014, 02:01 PM
Neil Cuadra Neil Cuadra is offline
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PamMc,

You clearly know not to panic about such a slowly evolving condition, and that it makes sense to watch the long-term changes in your counts and look for explanations and reasonable precautions you might take.

We should all avoid people with the flu, but whether or not you need to be more careful than an average person depends on your Absolute Neutrophil Count (ANC), which can be computed from your WBC and your white-cell differential.

Grab your latest lab report and fill in the ANC Calculator to find out. If you are mildly neutropenic, then extra precautions are a good idea.
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Old Mon Dec 15, 2014, 02:09 PM
PamMc PamMc is offline
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Thank you Neil. I went to he calculator and don't have all the information needed. It has GRAN flagged as being low. It has the LYM and a MID. Though I have been watching a long time there are times they throw something new on the report I haven't seen before. I understand GRAN included neutrophils and such. Again, thank you for your assistance.
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Old Mon Dec 15, 2014, 05:48 PM
Cheryl C Cheryl C is offline
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Hi Pam - If your ANC is low, carrying hand-wash wherever you go (and using it of course) is a good move as is wearing a mask when in crowded situations - a nuisance but it works!
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Dx MDS RAEB 10% blasts + hypogammaglobulinemia, Sep 2011. Jan 2012 BMB - blasts down to 2% w/out treatment so BMT cancelled. Re-diagnosis RCMD. Watch and wait from Feb 2012. IVIg 5-weekly. New diagnosis Oct 2019 AML 23% blasts in marrow, 10% blasts in peripheral blood.
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Old Mon Dec 15, 2014, 08:32 PM
PamMc PamMc is offline
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Thank you Cheryl. I am borderline. I will do the things you suggested. I have done these in the past when my levels went down, but wondered if I was being paranoid. Of course I know I wasn't, but it is a bother at times. I was 2 years fighting to get white cells up while working in the schools. Uphill battle. My immune system was not so good. Now I'm seeing new lower numbers and new ones added to the mix. I have about decided to avoid people for a while. Lot's of stuff going around in my neck of the woods.
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Old Tue Dec 16, 2014, 07:01 AM
Cheryl C Cheryl C is offline
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Don't despair, Pam. My WCC averages around 1.4 and has been as low as 0.9. Have lived with it this low for a few years now, and it's surprising how you can get used to being sensibly careful. I don't normally get sick very often. There are other things you can do too to help, like foregoing foods which contain cane sugar (bad for immunity), and milk products (mucous forming and therefore provide a fertile environment for germs to grow).
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Dx MDS RAEB 10% blasts + hypogammaglobulinemia, Sep 2011. Jan 2012 BMB - blasts down to 2% w/out treatment so BMT cancelled. Re-diagnosis RCMD. Watch and wait from Feb 2012. IVIg 5-weekly. New diagnosis Oct 2019 AML 23% blasts in marrow, 10% blasts in peripheral blood.
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Old Tue Dec 16, 2014, 01:09 PM
PamMc PamMc is offline
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Thank you Cheryl. I like the way you put it "sensibly careful". I had not heard of these diet things you can do. Is there a specific diet that should be followed? I've heard of an anti-inflammatory diet. Perhaps that would be helpful. We eat very healthy in my house, but I had never seen this about milk products. I am thrilled to meet you, you are a wealth of information. I may pick your brain frequently.
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  #8  
Old Tue Dec 16, 2014, 04:36 PM
Cheryl C Cheryl C is offline
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Thank you for your kind words, Pam. As you will be aware on this forum we all help each other as much as we can and I'm sure you will be able to help someone from your experience too.

I don't follow any specific diet. My parents taught me good health guidelines as a child and I've done my own research since developing neutropenia many years ago. There are others with low immunity on this forum who follow similar guidelines. I don't know if you've read any of my other posts about natural things you can do to try and knock respiratory infections and UTIs as soon as you sense one coming on? I don't want to bombard you with info!
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Dx MDS RAEB 10% blasts + hypogammaglobulinemia, Sep 2011. Jan 2012 BMB - blasts down to 2% w/out treatment so BMT cancelled. Re-diagnosis RCMD. Watch and wait from Feb 2012. IVIg 5-weekly. New diagnosis Oct 2019 AML 23% blasts in marrow, 10% blasts in peripheral blood.
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  #9  
Old Tue Dec 16, 2014, 07:15 PM
PamMc PamMc is offline
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I will be sure to check out your other posts.
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