[Alcof]

Hopeful, thank you so much for your continuing advice regarding AA. Its such a relief having an extra research head in this fight. Because we are back fighting today after yesterdays news. We are not giving up.

Sally C, thank you so much for your story! Ray of hope that Eltrombopag alone can work. I just need to get me some now...I will go find your story and read it all.

Hopeful, can you post links to the studies around Eltrombopag as first line treatment? I haven't found those myself yet. I too had only heard of Eltrombopag used for refractory AA or for moderate AA after ATG treatments. This is very promising.

In fact today I did a crazy, mad thing and wrote to Glaxosmithkline in NZ to see if they might be charitable and send some my way. Why not? Nothing to lose. Make them say no. If you don't ask, you don't get!

We considered a second opinion. But it is quite clear that the Doctor who has treated the most AA patients in this country, administers nearly all the ATG in this country is our Haematologist. Anyone else would probably just refer back to him. And he is very good. His concerns are around the fact that my Dad has diverticulitis in his gut (potential infection) and his kidneys flared up when he had pneumonia 6 weeks ago. That and the fact that my father can no longer walk and is not strong at the moment. 8 weeks ago he was fit as a fiddle, no underlying conditions. He is neutropenic now and that just makes him the ticking time bomb.

Hopeful, great advice about the fact that we're burning through blood products and that relating back to infections etc. That gave us a lift that it wasn't the disease necessarily getting worse. And today is day 9 since his last red transfusion. Only had platelets yesterday. This is the biggest gap we have seen. Too soon to call it an improvement. But I think what you say about cyclosporine taking a while to build up in the system makes sense. So we are going to try for at least another 4 weeks to trully make sure that avenue is exhausted. He is on 400mg per day for body weight around 95kg. (he is a tall man - good weight for his BMI).

Marlene, thanks so much for your very real advice on the palliative care side and managing the transfusions. Also the vitamin side is not something we had looked into fully. We are going next week to see a holistic healer of sorts to cover off all our chances. My Mum and Dad have been health freaks for years and will definitely look into levels. We are taking astaxanthin as a stab in a hopeful direction. We are going to contact hospice now also - just so that side is ready.

Thanks Marrowforum team. It really does feel like a team effort when I post on here. It gives me the confidence to say the things to the doctors, nurses etc that have to be said. (including expressing my frustration that they put him on prednisone in the first place. Glad we have kicked that one to the curb).