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Old Thu Feb 2, 2017, 08:54 AM
Kelly Kelly is offline
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Join Date: Jan 2017
Location: New york
Posts: 6
Thank you Hopeful & Neil. She has been off the cyclo for a few days.. She weighs about 190 lbs and gained another 20 from the steroids, etc. but you are right on the cyclo maybe being too high. She has been off the cyclo for a few days now but blood #'s haven't improved. She'll continue to stay on her steroid dosage until blood #'s improve. She sounds better now but still unable to walk, etc. Hoping that it means that they just need to adjust the cyclo dosage.

She is at Albany Med and they are working with Dana Farber - at least they were. We are finding out if that is still the case as they definitely should be. Our family is very concerned and have made the suggestion that they have the hospital transport them for full care at Dana Farber.

She has asked us to be swabbed for bone marrow match and so wondering if she should've had the transplant to begin with but will still hope that this works as there is still hope there.

So the answer I see is that it's not normal that she took that bad turn and it could be that the dosages need to be adjusted.

Other family members have suggested there could be too much iron in her so they will ask the docs today about that too.

Thank you and any other thoughts would be great. I really appreciate this forum.
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