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Old Sun Oct 30, 2016, 11:27 AM
bailie bailie is offline
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Join Date: Dec 2013
Location: McMinnville,OR
Posts: 825
Paul, I guess we all have our battles. It always amazes me how dissimilar they are. I guess that is why they really don't have a handle on these diseases. We try to extract as much as we can from each other, but that is a daunting task in itself. The more I learn, the more I realize how much I don't know. Same with the doctors. For me it is like trying to put together a 1000 piece puzzle with a few pieces missing. My thoughts have transitioned from this is mostly a science to this is as much art to now it is a lot of guesswork. That makes these diseases interesting, frustrating and many other things.

I have no complaints with the way I feel. I have periodically had joint pain (left hip and left shoulder) that is interesting. It feels like "bone on bone". The pain will really slow me down for about four days and then will completely go away. I have been trying figure whether it might be GVHD, the chemo (nilotinib) or something else. I will be switching to a different chemo (ponatinib) next week that doesn't have the "joint pain" listed as a side effect. The trade-off is that it is a "black box drug" that lists heart attacks and blood clots as a significant problem. I am not golfing now mainly because we have been having record breaking rain in the northwest.

I am hoping that you are starting to turn a corner with your situation. I am with you mentally knowing what you are feeling. Progress is our goal and keep the goal in mind.
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age 70, dx RAEB-2 on 11-26-2013 w/11% blasts. 8 cycles Vidaza 3w/Revlimid. SCT 8/15/2014, relapsed@Day+210 (AML). Now(SCT-Day+1005). Prepping w/ 10 days Dacogen for DLI on 6/9/2017.

Last edited by bailie : Sun Oct 30, 2016 at 12:35 PM.
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