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Old Thu Aug 21, 2014, 12:17 PM
Hopeful Hopeful is offline
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Join Date: Jan 2009
Location: California, USA
Posts: 766
Quote:
Originally Posted by Alcof View Post
Well it has been a very short ride. Hopes were dashed today when our doctor said he didn't think my Dad would survive ATG treatment and there was nothing he could do for us. I asked how long he thought we had - that people with AA usually take a year to die without treatment, didn't they? He said it would be a lot sooner than that given his age and deterioration. It could be any time.

So now we have to decide how to die.
Or mortgage the farm to pay for some Eltrombopag. Can't get it any other way in New Zealand except to buy it ourselves. $8,000 USD a month. And who knows if that will work.

Has anyone else had experience with being turned down treatment with ATG? What path did you choose to take?

Sorry if this has been a dark post. It has been a bit of a dark day for us.

Appreciate any thoughts.
Alcof,

I am sorry to hear this news, but I would not give up hope! If I were in your situation, I would seek out another opinion. However, I would not stop the cyclosporine if his kidneys are handling it okay. It takes 2-3 months for cyclosporine to build up in a person's system. What is his current dosage and what is his weight in kilograms? I just want to confirm that he is on a standard dosage (5mg/kg/day).

Has he stopped the prednisone? Prednisone is not a treatment for AA and has terrible side effects including increasing the risk of infection.

The infections that he picked up are likely responsible for his increased transfusion requirements. Fevers will burn through platelets and RBCs at a rapid rate.

It takes ATG/Cyclosporine 3-9 months to work (typically). Cyclosporine alone is a weaker immune suppressant. So it seems logical to me to think that it may take longer than 8 weeks to see results, especially if he picked up some infections during that time. Are you seeing any signs of stabilization of his condition?
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55 yo female, dx 9/08, AA/hypo-MDS, subclinical PNH, ATG/CsA 12/08, partial response. small trisomy 6 clone, low-dose cyclosporine dependent
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