So, I was diagnosed in August of 2009, was on Gleevec for two years before my numbers went south. I switched to Sprycel for six months and got pleural effusion, so I switched to Tasigna. Now, I finally got my first undetectable PCR. I always believe my crappy results, so I find myself a bit skeptical, but decided to be happy for a fews months until my next appointment. What's interesting is that I was in the hospital for two weeks with pneumonia and was on a few drugs that interacted with Tasigna, so I was expecting a lousy PCR.
Posted 19 December 2013 - 11:11 AM
Congratulations! All the more sweet considering the path to get there. Wishing you continued and lasting PCRU.
Posted 19 December 2013 - 12:26 PM
I am a lot like you in this respect. After a long and hard journey with many things going unusually wrong, (a lot like you), my last 2 PCRs have been neg. and I still don't believe it (I was also dx in '09 and didn't do great on G). Anyway, be happy! Why not? Sure beats the alternative. You just got to allow yourself. Celebrate now, if only just because it feels good! We already deeply understand that life is short. Seize the moment. That's all any human has anyway. This moment is shining.
Continued good health to you!
Posted 19 December 2013 - 11:27 PM
Not everyone has a straight zip to PCRU. I did not due to my tremendous dislike of Gleevec. Congratulations ! I wonder if it is possible that your Tasigna interacted in such a way with your other drugs that it stayed in your system longer and beat the bad guys once and for all.
Whatever the case, your tenacity has been quite inspiring for us all. Thank you for keeping us informed. May your next PCR test be just as great and more believable in the months to come !
Dx'd: 8/2008. Started Gleevec 400 mg 11/08.
Drug break 2011.
Started Tasigna 4/11 450 mg.
Reduction to 300 mg Tasigna 1/2012.
PCRU 4/2013 through 3/2015. (Reduced to 150 mg 7/2014)
12/2015 ? slightly detectable at probably less than 0.01% per Mayo Clinic.
4/2016 PCRU. Still at 150 mg Tasigna.
CESSATION: stopped treatment 7/20/2017.
9/6/2017: barely detectable at 0.01%.
12/11/2017: PCR at 0.09% (did not do the monthly PCR testing.)
12/18/2017: Inevitable call from Onc. Started back on Tasigna at 150 mg. (Considering Sprycel low dose.)
Posted 20 December 2013 - 10:14 AM
Badger, Tedsey, and Janne,
Along the road to PCRU did you have occasional increases in your PCR readings? I'm not exactly an optimal responder but seem to be making progress. I got to CCyR after about 16 months but the same time had a PCR increase from 0.6% IS to 0.8% IS (although the results were from different labs). Just curious if you went through this as well.
Take care, and happy holidays!
Posted 20 December 2013 - 10:47 AM
I've never had the IS available, just the log reduction numbers. While on Gleevec, I was at a 3.99 at eighteen months. I dropped to a low of 2.33 and hovered around 3.0 for a long time, mostly because I was on a lower than recommended dose of Sprycel and the Tasigna because of side effects. Things started to move once I was able to tolerate a normal dose of Tasigna. In the space of six month, I went from a 2.88 to PCRU.
Posted 20 December 2013 - 10:17 PM
Congratulations on PCRu!! Maybe '09 was a slow year. That's when I was diagnosed and I was a turtle on Gleevec, also.
Enjoy your status and try not to waste time focusing on your next test.
Posted 21 December 2013 - 09:17 AM
Don't be sad be happy you reached the goal. Mine took 6 years and 4, now 5 since Iclusig was removed from the market by the FDA, different TKI's. Have a drink and be thankful, I know I am.
Posted 22 December 2013 - 12:06 AM
Hi: Glad you decided to be happy rather than skeptical. You should do very well, and your fortunate that there are a few TKI drugs so you can find the right one that works for you. I am a very skeptical person most of the time, but I Thank God everyday for where I have gotten to with my Gleevec. I just pray that they find something even better than a TKI in the near future. Enjoy the Holidays and Celebrate.
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