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Old Sun Nov 26, 2017, 03:03 PM
Hopeful Hopeful is offline
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Join Date: Jan 2009
Location: California, USA
Posts: 697
I am sorry to hear that your mom is still struggling with infections. I imagine the doctor's main concerns are to get the infections under control and restore her liver functionality. Both cyclosporine and Promacta are hard on the liver. So be sure that you are consulting with someone with experience with Promacta to make sure that it makes sense for her. None of these drugs are benign.

For example, this was taken from the Promacta website:
"Boxed WARNING: What is the most important information I should know about PROMACTA? PROMACTA can cause serious side effects, including: Liver problems."

Infections will burn through both red blood cells and platelets and can cause an empty marrow. Have they tried G-CSF to help her ward off infections? I am not a doctor or a medical expert. I am just trying to give you more options to discuss with her doctors.

I hope they can get her pneumonia under control.
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52 yo female, dx 9/08, AA/hypo-MDS, subclinical PNH, ATG/CsA 12/08, partial response. Tried slow cyclosporine taper over 4+ years. Platelets fell, so back on cyclosporine. Trisomy 6 clone in 5% of cells.
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