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Old Thu Aug 28, 2014, 10:48 PM
Alcof Alcof is offline
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Join Date: Aug 2014
Location: New Zealand
Posts: 22
Kitchen Sink

It pays to be active in the care of the ones we love. Reading the forums and making sure EVERYTHING is explained to us is so important. We really are part of the team. As such the Doctors are really throwing the Kitchen Sink and everything else at this disease that we can think of.

Dad is tolerating the Danazol very well, continuing Cyclosporine, and now he is getting daily injections of G-CSF. In addition they are really pushing the boundaries of his transfusions. Trying not to give platelets just because we are <10. He is in hospital still and they are waiting to see if there are any bleeds and if he can stabilise at very low levels. And so far so good! He has the mouth blood blisters but they are not bleeding and are still clotting. And his energy is still quite good. Eating, sitting up and all that. Still not walking much though.

And we are STILL optimistic that we might have support from Glaxosmithkline to get some Eltrombopag. They responded to my letter and requested to speak to my Dad's doctor. The Dr filled in a heap of paper work and its gone off for consideration! Feels so good to have taken a chance and have had someone listen - even if it ends in a NO answer - I'll still feel like I tried. In the meantime we are enjoying our little spell of optimism....especially given the FDA have now green lighted Eltrombopag in the US...
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Father 72 has been diagnosed VSAA June 2014, was on cyclosporine as first treatment 06/2014 - 09/2014. 8 weeks after diagnosis doctor believe he would not survive ATG Treatment. GCSF 3 weeks Aug 2014 Currently on Eltrombopag 09/14 Danazol 25/08/14.
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