Advanced Member
Posted 30 October 2013 - 04:33 PM
Hi everyone, I just got my one year results after a long wait. Apparently I have a complete cyto genetic response. My bcr abl is 1.2 per cent. My doc says she is really happy, especially given my slow start: 80 or more at dx, 43 at 3 months, 15 at 6 months, 3.24 at 9 months. Sprycel is no fun but it has to be so worth it for this! Am so happy and hope response continues.
Thankyou all. I truly would have been lost in the past year without this forum xx
Advanced Member
Posted 30 October 2013 - 06:54 PM
Hi: So Happy For You Too!!!! Your doing very good. Some are slower than others to get the response, but you are on your way to get a PCRU. Yes, this forum is great, and we all share all our experiences to help each other to know they are not alone. We are all going through something.
Susan
Advanced Member
Posted 02 November 2013 - 09:11 PM
Alexamay09,
Somehow I missed this post, congratulations! I know it's been a long first year and I hope this next year is better for you. Goals are wonderful things but when they are set by those who have no control over the outcome, they can be burdensome. All we can do is take our medicines as we're supposed to and let our bodies do the rest. PCRU would be wonderful, but it's not my goal because I have no control over whether or not I can reach it. Something I wish the docs would keep in mind when they are looking at a downward trend and pronouncing it "not good enough".
Here's hoping the numbers continue their downward trend and when they do - well, I wouldn't subject my body to 140 mg. of Sprycel for any longer than necessary.
Good luck,
Pat
Pat
"You can't change the direction of the wind but you can adjust your sails."
DX 12/08; Gleevec 400mg; liver toxicity; Sprycel 100mg.; CCyR 4/10; MMR 8/10; Pleural Effusion 2/12; Sprycel 50mg. Maintaining MMR; 2/15 PCRU; 8/16 drifting in and out of undetected like a wave meeting the shore. Retired 12/23/2016! 18 months of PCRU, most recent at Mayo on 7/25/17 was negative at their new sensitivity reporting of 0.003.<p>
Member
Posted 03 November 2013 - 12:13 AM
Congrats, but at some point wouldn't continue such high dose. To many people get PE even after a year or two. Fluid can be building up over time. Not good. Might look up some of those post on PE on Sprycel.
I am on Gleevec but have followed a lot of those. On standard or higher dose Sprycel.
PamSouth
Advanced Member
Posted 03 November 2013 - 12:40 PM
Yes the high dose worries me a little but doc is going with it meantime to see how far we can get the response. Hopefully we can reduce the dose at some point. I'd love to get a deeper response and maybe relax a little. Xx
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