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Old Sat Jul 30, 2011, 01:45 AM
KimO KimO is offline
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Join Date: May 2008
Location: Chattaroy, WA
Posts: 48
My daughter relapsed 14 months after finishing a taper that began at 7 months post treatment and lasted about 9 months. For the last 10 months she has been on a 300 mg per day dose of cyclo (200 mg in the eve and 100 mg in the morning to work around side effects) and her counts have been low normal since about three months after resuming the dose. When we consulted at Seattle Cancer Care about a bone marrow transplant they indicated that her chances were good of getting off of cyclosporine completely "within the next five years" but did not want to go on record with a suggested taper schedule.

At her hemo appt last week we all agreed to try dropping 25 mg every three months with monthly CBCs in order to be able to monitor if counts begin to drop. The first four decreases will come out of the higher dose. If it ends up she needs a therapeutic dose long-term it will be easier to determine the lowest amount that works if the taper is very slow. If she is able to taper completely the proposed schedule will take three years.
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Kim, mom to Shauna, SAA 10/2007 at age 19, ATG/Cyclosporine 12/2007, end cyclo 4/2009, relapse 8/2010, and 9/2012, counts recovered on cyclo alone 300 mg/day x 2.
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