New Member
Posted 27 March 2014 - 07:03 PM
For those that have been following the previous thread: I have been lowered to 20 mg of sprycel after 3 years.
After 2 months, the PCR has come back at undetectable!
Yipeeeeeeee!!!!
Oh, and I feel SO MUCH BETTER.
Hope this gives some extra information to our little pile of anecdotal data.
Caroline
Advanced Member
Posted 28 March 2014 - 08:02 AM
Congratulations! It's great to see so many people doing well on such a low dose of Sprycel. My doc was astounded when I maintained PCRu on 50 mg. . .of course it hasn't been very long and one test is not a trend.
That said, your results make me hopeful that at some point I'll be able to go even lower.
Marnie
Advanced Member
Posted 28 March 2014 - 08:22 AM
That is awesome. Congratulations.
Advanced Member
Posted 28 March 2014 - 10:51 AM
Lowering my dose has caused me to almost relapse. I lost Pcru and every PCR is a little higher despite increasing dose back to 100 mg.
Switching and lowering my dose has been the stupidest thing I have ever done. Don't know why I'm the exception here but this has been a big mistake for me.
New Member
Posted 28 March 2014 - 12:19 PM
Hang in there Lucky - it has to be so frustrating to be having these set backs. Try to hang in there - I hope you hear of an improvement soon. And please stop beating yourself up - this disease is doing a good enough job of that. Maybe (and I think someone suggested this), going back on Gleevac will get you back on track. Try to stay positive - I know it can be hard, but we are all pulling for you!
I too am contemplating lowering dosage on Sprycel and my doctor is resisting - everyone's honesty on this site helps to see the big picture. Won't rush into anything and take my time with it, maybe go into Boston or NYC for a second opinion.
I really hope it gets better for you soon...
New Member
Posted 29 March 2014 - 11:46 PM
Lucky: Oh dear, that is my biggest fear, and why I didn't stop all together. I hope you find a balance Lucky, and that it is soon! I was actually surprised that my numbers were as good as they were. I still have a butt load of side effects, although CLEARLY not as much as before, so I know the drugs are still doing something. Fingers and toes crossed!
New Member
Posted 29 March 2014 - 11:48 PM
Thanks for all the good wishes everyone. I will post back in another 2 months with next test results for those that are keeping score. wink!
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