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MDS Myelodysplastic syndromes

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  #1  
Old Sun Sep 25, 2016, 09:57 PM
Faye R Faye R is offline
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Location: New Zealand
Posts: 60
Talking blood counts

Hi I have just have my fortnightly blood transfusion I was wondering why I was not feeling as I usually do latest blood results have told me why
Haemoglobin 83
Haematocrit 0.26
MCV 92
MCH 30
Platelets 31
WBC 0.50
Neutrophils 0.06
Lymphocytes 0.42
Monocytes 0.02
CBC comment giant platelets present
DX RCMD what stage I'm at now who knows Vidaza for 13months stopped due to drug not working anymore
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  #2  
Old Mon Sep 26, 2016, 02:14 AM
Cheryl C Cheryl C is offline
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Hi Faye - I can understand why you're concerned. How long since you had a BMB? Any blasts?
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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 Sep 26, 2016, 08:30 PM
Faye R Faye R is offline
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Cool blood counts

Hi Cheryl C - I haven't had a BMBT for over a year, my last BMBT said that I was RAEB - 2 but Ruth My haematologist has always classed me as RCMD any way my blast cells are 8% 20/8/15 they were 16% in 16/9/14 that was before the start of Vidaza, I'm never told if there is blasts in my peripheral blood. I think my blasts have gone back up again to 16% - 20% just got this gut feeling in my stomach, is there any way I can get my neuts: up I take all the Vitamins etc I know I'm lucky still to be here I refuse to give up, to much to look forward to like the rebuild of our poor city.
DX ???????
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  #4  
Old Tue Sep 27, 2016, 03:07 AM
DanL DanL is offline
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With a WBC that low, neupogen might be an option, but I know that some doctors were reluctant to use it because of the potential for creating a blast crisis. From what I remember reading, the increase in blasts resolved after discontinuing neupogen. I don't think any of the research was really definitive on this point, and may have been refuted. It may be worth talking to your doctor about it though. The combination of low HGB and low whites could make you pretty tired. I did pretty well energy-wise for 4 years with really low platelets but otherwise decent WBC and HGB. It wasn't until my whites dropped that I really experienced fatigue. I know that doesn't make a lot of sense, but it was the correlation that I drew at the time, and the doctor confirmed that when you reach the near zero neutrophil count is when you feel the most debilitated during transplant.

Also, a quick comment on RCMD versus RAEB-2 - RAEB-2 can have multi-lineage dysplasia, but is defined as having 5-19% blasts. RCMD is usually defined by multi-lineage dysplasia with less than 5% blasts.
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MDS RCMD w/grade 2-3 fibrosis. Allo-MUD Feb 26, 2014. Relapsed August 2014. Free and clear of MDS since November 2014 after treatment with Vidaza and Rituxan. Experiencing autoimmune attack on CNS thought to be GVHD, some gut, skin and ocular cGVHD. Neuropathy over 80% of body.
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  #5  
Old Tue Sep 27, 2016, 07:57 AM
Cheryl C Cheryl C is offline
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Re increasing your white cell count, there are some websites that might be of interest. Here are a couple:

http://renegadehealth.com/blog/2013/...ount-naturally

http://naturalon.com/top-10-natural-...stem/view-all/
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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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  #6  
Old Wed Sep 28, 2016, 10:30 PM
Naive Naive is offline
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My doc is discussing long term Prednisone alongside the Neupogen because the Neupogen alone, whilst somewhat effective, has not increased my white cells into the safe zone.

I don't know if that's an option in your case.
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