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Old Sun Jul 31, 2011, 12:06 PM
KimO KimO is offline
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Join Date: May 2008
Location: Chattaroy, WA
Posts: 48
Yes Jody, Shauna is also 23. She was 19 when she was diagnosed. The first taper the docs were going by the protocol that said start tapering at six months (and her numbers were in the low normal range at that point) but I think we were waiting until she returned home from school in Seattle to start so that's why it was 7 instead of 6. I had read the data on better success with a very slow taper so that's why I advocated for but Shauna was really tired of being on cyclosporine so she was all for getting off of it as soon as possible. The compromise was a 9-month taper. Her numbers initially rose as we tapered so we wondered whether it was because her kidneys and liver were happier. However, over the second half of those nine months the platelets seem to drift down. I keep charts on everything so I even ran a trend graph to confirm but the docs were sure that as long as she was still in the normal range we were fine. Her platelets drifted from around 200 to the 150-160 range by the end of the taper and then seemed to hold there while she was off the cyclo for those 14 months -- some months a little higher and one was lower. Then the last test before she headed back to Seattle for he senior year of college the platelets dropped significantly and her ratio of lymphocytes flip-flopped so that the lymphs were about double her neuts. I couldn't convince them it was the start of a relapse so we had to wait another week to establish a trend. Then when they dropped further they started her back on the 300 mg of cyclosporine. At first they continued to drop but not as fast, followed by a couple of weeks of holding steady, then they very slowly started to head in the right direction. It was like watching a bungee jump in slow motion. Now she's been on cyclosporine for the 9 months and the numbers are normal again so we will be trying the extra slow taper to see what happens. The doctor we talked to at Seattle Cancer Care was very experienced in AA and immunosuppression in particular but she said that there is no magic schedule -- it's more of an art than a science to adapt the schedule to the patient based on how it goes. My gut feeling is that Shauna is probably one of those that will need to be on cyclosporine for a long time if not the rest of her life. What we're trying to do now is find out what the lowest magic number is that keeps her immune system in check. I'm happy to answer any other questions and if you want to exchange emails I think we can send those to each other the address through the message system on this board so that we don't have to post them on the internet. I'm praying for full recovery for Trevor so he can go on and have a great 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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