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Old Sun Sep 9, 2018, 12:36 PM
ASQ ASQ is offline
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Join Date: Apr 2018
Location: England
Posts: 15
Hi Justin,. My wife has responded well to IST . She had an early response and bloods have risen and stabilised .
Although still under range Hb 97platelets 1000 and neutrophils around 1-1.5 . She hasn't had a transfusion for a few weeks now . She feels well at present .
She was quite unwell before treatment when Hb was 72 and platelets were 5 and numbers were falling week on week . Post treatment had a few problems with antifungals making her poorly ( itraconazole ) but a change of meds sorted that . At present she is on 125 twice a day cyclosporine and that seems to keep her within therapeutic range . She still gets tired but considering what she has been through she feels very well .
However we have seen the head of her treatment team recently who advised that a SCT is needed as her SAA had progressed to hypoplastic MDS . We reasoned that transplant treatment wouldn't be suggested unless it was absolutely necessary . The consent forms are signed and the wheels are in motion . So a transplant will be carried out maybe around Christmas time . My wife just wants to get on with it now and all being well be cured of the hMDS/PNH and fibrosis .
So that's where we are up to . I hope you wife is improving and feeling as well as she can be. I wish you both well .
Regards ASQ
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