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Getting more results back tomorrow a little nervous. (updated)


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#1 cleocans

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Posted 06 December 2011 - 04:33 PM

I'm seeing my onc, the one who wanted to up my dosage of sprycel, tomorrow.  He kept the PCR test scheduled even though I didn't change my dosage.  Which is good because this will be the last time I see him before he moves and it will be nice having a more recent test for my new onc.  I'm hoping my numbers went down again, just to say, "See I am responding well!"  I've been searching Trey's blog and here for questions and things in case he gives me a hard time again.  I am trying not to stress to much about it since I'm fighting a flu bug my eldest daughter decided to share with me!

Well in one month my PCR went down from 0.5 to 0.407.  not much but still going down.  I asked my onc if he did a FISH and he only did one at diagnosis.  He is fixated on the PCR #'s  He wants me to get to 0.00000 as fast as possible.  He tried to push for a higher dose again, but was at least respectful that I declined.  I see my new onc in 6 weeks.

    Kim



#2 Judy2

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Posted 06 December 2011 - 05:36 PM

Hi Kim. Good luck, please keep us posted. I'm curious as to your experience with Sprycel as I will be starting it shortly. Thanks.

Judy



#3 cleocans

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Posted 07 December 2011 - 11:34 AM

Judy, according to most people here I am doing well on Sprycel.  In 4 months my PCR went from 24.695 to 0.407.  I had the headaches for about 4 days when I started Sprycel.  I also had bone and joint pain which has pretty much disappeared.  My only side effect that seems to be staying around is water retention.  I am retaining it pretty much everywhere, thighs, butt, abdomen, arms, and my boobs.  Which is not all bad as I can fill out my bra now!!  But I'm sure some people who don't know I have CML might be thinking I got a boob job! 

Good Luck,

   Kim



#4 Judy2

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Posted 07 December 2011 - 02:44 PM

Kim, I'm glad Sprycel is working so well for you. I didn't realize you could retain water in your boobs, that might not be so bad for me, also.

Judy






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