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A second opinion...

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#21 xxgirl


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Posted 13 April 2015 - 04:12 PM

Much to my chagrin, you were all right, and it looks like I need to find myself a new oncologist.  


"Hapless Henry" was not responsive to my questions, or requests, and dismissive about my complaints.


I requested a BMB, and he told me that one was not necessary, as the BCR-ABL test is much more sensitive, and can give you all the information that you need.  "The only thing that would be found in a BMB is the Philadelphia chromosome."


I voiced my concern about meeting response milestones as I am already a year from diagnosis, and he told me that my drop in BCR-ABL from 46% to 27% was a good response.  When I asked candidly what we would do if that number did not continue to go down, he said, "I won't allow it."  I responded that, while that was a nice sentiment, where the *bleep* were you in January, then, when I went from 6.8% to 46% in 3 months?  When pressed, he said that he could double my dosage of Sprycel (I'm on 100mg...I thought that 140mg was the highest, or am I misinformed?)  Or that we would try a different TKI.  (I was also told that a mutation test wasn't worthwhile, as "you don't really know which TKI is going to work until you try it for awhile.")


Directly after that i mentioned that I have been having headaches, awful mouth sores, have been seriously fatigued, and not healing well...and we found that I have mild pancytopenia (Hemoglobin - 9.8, WBC - 3.7, Platelets - 69).  (Double dose of Sprycel should clear that right up, yeah?  Or not.)  Solution?  Rinse my mouth with peroxide, and see him in two weeks.  


Suffice to say, I was not pleased.  It should have been a victory for me, as my BCR-ABL came down quite a bit, but I left feeling defeated and frustrated.  I'm getting tired of the "shot in the dark" method, and would like to feel like some deliberate informed choices are being made.


Currently jumping through insurer's hoops to get a referral to a new oncologist.  


Thank you to everyone for the support and valuable advice.

#22 gerry


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Posted 13 April 2015 - 06:26 PM

You are going to be with your doc a long long time, you need to be happy with them. :)

#23 Billie Murawski

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Posted 14 April 2015 - 10:53 PM

good for you, hapless harry is history!

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