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When you got the second opinions where things pretty much the same as they are now? If things have changed, it might be something to consider.
You never know about the NIH...they are always changing things, so I personally would not go based on the info on the internet and would call and talk to them about a trial. If that is what you are interested in.
How do you feel with your HGB so low? Because you also want a good quality of life. If you feel you are affected even though your HGB is not less than 8.5, you could maybe talk to them about transfusing based on symptoms too.
Laura
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Laura; dx SAA; MUD transplant June 18, 09; ITP June, 2011; fighting multiple complications/GVHD and now low counts again...
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