Thread: G-CSF
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Old Tue May 4, 2010, 07:21 PM
Julianna Julianna is offline
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Join Date: Feb 2010
Location: Victoria, Australia
Posts: 184
The secondary MDS question...

Hi Hopeful. Yes I have done really good for the past 14 years! My platelet count started dropping slowly down last year, but I tried to ignore it. Until I needed surgery, so had a platelet transfusion. And months later it doesn't go much above 20. But seems to be staying for now.

Back to my AA diagnosis: they told me they were waiting to make sure I didn't have a pre-leukaemic condition (I know now that they meant MDS). But they said no, it's AA. I don't think it was SAA, but it did get worse as time went on. Lots of transfusions every 2 weeks. Searching for BMT match in my family - wasn't found. So they started ATG, Cyclo, Steriods etc. Only after I had a nasty infection did I start G-CSF. Which I was on for a few months I think. But I was on Cyclosporin for about 5 years. And after that I was really good!

All I remember about my counts over the years is that my lymphocytes, platelets, neuts, and hemoglobin have been just under normal. Lymohoctyes and platelets the worst. But they do go up and down of course. I just ignore it after a while... because they were acceptable.

I guess when I get unwell or infection (which seems to be a lot) I have a blood count to make sure things are ok.

So Neil... yes ATG did great things for me! So what the future holds is not in my hands... and I guess thats ok. 14 years without any real problems can't be sniffed at.
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Julie (38yrs); dx AA 1996 & treated w/ATG, cyclosporine & G-CSF; 2010 dx int-1 secondary MDS, low platelets, on prevention antibiotics, fevers of unknown origin, MUD found for BMT when the time is right, which is now! MDS transformed to AML after many infections.
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