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MDS Myelodysplastic syndromes

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  #1  
Old Mon Oct 23, 2006, 08:00 PM
okaye okaye is offline
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Location: Australia
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dropping haemoglobin

Hi All, my haemoglobin has dropped from 108g/L to 92g/L in three weeks. Seems like a sharp drop off. My drop in haemoglobin had been following a nice slow downward trend that, if continued, would have taken me another six months to reach this point. Haematocrit is 27% and mean cell volume is 108.3.
Has anyone else experienced a drop like this? And if you have, have you been able to link it to any particular activity or treatment? The only thing I might be able to put it down to is drinking a cordial (daily for four days) which had sasparilla and gingseng in it (in the days prior to the blood test). Think I'll give the cordial a miss now! Three and a half months ago I was walking a ten day hike in the mountains of tropical New Guinea. Maybe this is when the precursors to the red blood cells were being fomed and the physical activity had some suppressing effect on the bone marrow production? Or the antimalarial drugs had some effect?
So far the low Hb has had minimal effect on me. I can still walk 5km first thing in the morning but do get puffed on big hills.
I was diagnosed with MDS last month, age 42. Still soaking in the information, especially to do with treatments. The only MDS approved treatment available (in Australia) at present is Vidaza, thouh others will be available next year.
Regards, John
I should just add the following postscript/edit; a further blood test a week after the Hb = 92 has shown that my Hb has gone back up to 103
6th December Hb=89

Last edited by okaye : Wed Dec 6, 2006 at 01:14 AM.
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  #2  
Old Tue Oct 31, 2006, 07:50 AM
EJ Shepherd EJ Shepherd is offline
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Unhappy dropping of haemoglobin

Hi
Mine dropped from 110 to 84 last week and had another cbc and hope dr will give me a transfusion this week. I have not done anything different to cause this to drop. I can hardly move around and am very weak. I have MDS with RCMD just dinogst in JUly 2006 age 65
Erna
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  #3  
Old Sat Nov 4, 2006, 06:53 PM
seniorrico seniorrico is offline
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Hemoglobin Drop

Mine use to drop 0.3-0.4/week with a transfusion every 35-38 days. My last drop was 10.8 to 8.2 in 12 days requiring a transfusion. I start Dacogen Monday.
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  #4  
Old Sun Nov 26, 2006, 05:50 PM
jennie jennie is offline
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A few months ago I had two beers, and my hgb dropped alot that week. So no alcohol ever, now.
Seniorrico, how is the dacogen going?
Jennie
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Still unclear if AA or MDS. Diagnosed first in March, 2006. two transfusions, procrit holding steady now
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  #5  
Old Mon Jul 30, 2007, 02:13 AM
Kitty Kitty is offline
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Hemoglobin drop

Mine dropped from 11 to 6.6 six days after a transfusion and a shot of Aranesp. The Dr. told me it was because of a delayed reaction to the transfusion (it wasn't matched correctly).

I needed another transfusion right away.
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  #6  
Old Mon Jul 30, 2007, 10:21 PM
Zoe's Life Zoe's Life is offline
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I once went from 10.4 to 9.6 in a month, and once from 11.9 to 11.1 in two weeks. Both times I bounced back up by my next blood draw. Those are the biggest drops I have had. Nothing like some of you have had. In spite of having MDS, I am reminded to count my blessings.

Zoe
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Diagnosed MDS-RA 5q- at age 47 (November 2006). Aranesp 2/07, good response.
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