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MDS
Hi Teo,
You know I have no other diseases than MDS and actually feel fine. I manage well with a HGB of 8.0 and don't need transfusions now when my HGB is about 11.0 due to Thalidomide + Prednisone.
When I started to take Thalidomide 2010 I received 2 units of blood every week. I have irregular antibodies and that means that it takes hours to find blood for me - I leave blood for a test the day before transfusions. Then I received Desferal from a small home-pump in my port-a-cath (directly into i vein) during 4 days. The pump has to be taken away. This meant that I had to visit the daycare ward 3 times a week.
Then my ferritin level was rising rapidly (max 5600) and my dysfunctional platelets were 22 (risk for brain bleeding).
These problems made me accept Thalidomide + Prednisone. Now I visit the hospital 3 times a month instead of 3 times a week - blood work twice and flushing of the port once a month.
I have a very low dose of Thalidomide - 4 caps รก 50mg when the usual dose is 50mg/day and no adverse effects.
Only about 30% of MDS patients respond to Thalidomide and the median response time is about 9 months so I have responded very well.
If your mother's doctor thinks Vidaza and Dacogen are too expensive or have severe adverse effects and not should be given to your mother he ought to say that.
Kind regards
Birgitta-A
Kind regards
Birgitta-A
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