I just received my pcr results: NOT DETECTED!!!
I stopped Sprycel 2 years and 4 months ago!!!
It is possible, guys. 😁👍🤪🤩😷
The interesting fact is that I was never undetected before on Sprycel (100 mg for 4 years and 50 mg for 7 months). I had a big pleural effusion and I had to stop Sprycel to heal my lung. My pcr was very close to undetected: detected but not quantifiable = less than 0.002%. And stopping Sprycel did not change my pcr results for 2 years!! It was unexpected to say the least.
Please don’t hesitate to ask questions.
All the best,
Great result on undetectable when treatment free!
I stopped Datatinib 18 months ago after 8 years of treatment. PCR at discontinuation was varying between 0.003% and undetectable. My count slowly went up to .02% after a year treatment free, but it's now back to 0.01%. It seems that my immune system is managing to keep the count down itself.
When it was climbing up from 0.001% towards 0.2%, I was pretty convinced that I'd be back on treatment but it doesn't seem to have worked out that way, it's just annoyingly slightly higher than one would want!
Anyway, it might be helpful to people going treatment-free to know that a rising count isn't necessarily a one-way trip back to treatment, results can stay higher than on treatment, but not get high enough to need to restart
Thanks to all for your kind words. It means a lot.
And I wanted to share an interesting fact about my CML. I stopped treatment after 4 years of Sprycel (2018) because of a pleural effusion and my pcr is stable.
But in 2016 (2 years in treatment), I had a problem with Sprycel (100mg) and some cranberry extracts (against bladder infection). My pcr begun to rise slowly and when I stopped the cranberry extracts, my pcr went back down. I suspected that the extracts had a interaction with the absorption of Sprycel and therefore decreased the amount I was treated with and my pcr went up. So it means that at that time, I was not able to stop treatment or even decrease, without my pcr going back up, and 2 years later, it was the right time....
So, if you fail TFR at one point, don’t despair and try again later !!!