Greetings and thank you, everyone, for you support and great ideas and expertise.
I was dx Jan 26. WBC of 57K and all other counts elevated.
Started 100 MgSprycel and reach a CHR Complete Hematological Response by the end of February. I keep watching the ANC drop - it is at 2.7 down and appears to be leveling off. Drop is slower now. RBC is low 4.something but my onc is not worried.
Here the deal - he doesn't bellieve getting a FISH or BMB is useful - his believe is "so what". Whether you reach PCRU or CMR or CMM or whatever, the treatment is the same. If you go off Spryel, your leukemia will come back. If you continue on Sprycel it will stay in remission. I am not having any significant side effects but who knows the long term side effects and would a drug holiday be good for whatever time you might reclaim from reaching PCRU? There is onc heme at the Emory Winship Center and he is on the CML natinal advisory board. I do love my onc heme - but am wondering, since this is my old body, maybe it is worth some expense and time to consult with this other doctor. His credentials don't lead me to believe he is doing any special work on CML research, but he obviously was selected to be one of the advisors on the CMl Board for some expertise. So what would you all recommend? I have been sooo impressed by the level and depth of response and heartfelt responses from those of you who are "regulars" on the board - Ok- I've been a shy lurker :=) that I felt it worth asking for some support myself. I just am in a quandry as to what to do. Thanks for any help you can offer....was totally overwhelmed by this disease at first, angry, confused, shocked primarily and felt at the mercy of the doctor and nursing staff who have been the best ever. just amazing. So kind and helpful. But I am still concerned about not necessarily getting enough information to make my preferences known. So, why do the FISH or BMB???? Rambling in Decatur, Ga.