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Just thought I would post about our consult in hopes it would provide info for anyone else in the same boat. The takeaways were that 1) with normal cytogenics, Seattle Cancer Care will not consider transplanting for AA unless the patient's disease meets criteria for severe, 2) the original BMB sample was too small for their liking and they would like us to repeat just to confirm that the cytogenics are still normal, 3) Shauna apparently has a reasonably common HLA profile so there are multiple 10/10 matches available if necessary down the road, 4) it's ok to stay on the cyclosporine long term as long as the side effects are tolerable but they agreed that tapering would be possible and even desirable. However, they didn't want to go on record as to recommending a specific taper schedule to try other than "slower than last time" since last time resulted in a relapse. I did ask about telomere length as it relates to AA and was told that they didn't think it was applicable in Shauna's case.
We were praying for a definitive answer and the doctor actually said if she recommended Shauna for transplant she would be laughed out of the room and then fired. It couldn't have been more definitive than that. Hopefully the BMB this summer will be normal again and she can concentrate on getting into nursing school and getting on with her life.
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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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