|
Pretty Funky,
Have you thought of contacting NIH about Promacta? NIH is doing several different Promacta clinical trails for patients with SAA. My understanding is that they are using Promacta with ATG and Cyclosporine for those that have not been treated yet. They are also offering Promacta trails for those who have refractory SAA. I have read that NIH is having excellent results with Promacta. A benefit of NIH prescribing Promacta is they promise to watch you very very closely so any negative effects are caught early. If the travel distance worries you- talk with them before deciding against. I believe they can help you with travel cost. Sally C has posted that NIH is a wonderful research facility- a place of healing. I believe we can all have the wonderful result her husband has had. Please let me know if you would like the phone number to NIH's Promacta Clinical Trail Nurse: Diane Madey
May the Lord bless you. May the Lord bless all with bone marrow failure.
|