so, amy has been on the braf/mek trial now for about 4 months. she is doing well tumor wise, but the fatigue is really kicking her butt. we heard from so many people how they felt really good on this combo but that hasn’t been the case so much for amy. it’s starting to effect her mentally a lot also. it’s bad enough to not be outdoors much due to the sun sensitivity, but she has virtually no energy to do things inside. she is just spent most of the time. so, good results but she is not living much at all if that makes sense.
did others have this experience? she doesn’t want to go on the dexamethazone because she doesn’t want to mess with her adrenals and it was the prednisone that launched her into that delirium previously. i’m trying to get her to consider doing short “stints” on the dex with doc monitoring it. maybe 10 days on, taper off and then wait and see how she feels. she did dex once before after radiation and it really helped her energy.
any thoughts on the above?
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