You are here

12 month BCR reading not as expected



My 12 month IS reading is showing as 0.3% following a 9 month reading of 0.187%

The consultant has freaked me out a bit, requesting a new test in 4 weeks and a check for a mutation. He even started discussing the possibility of needing to change TKI which I am not keen on hearing as I don't want to risk new side effects after overcoming a very difficult first 6 months on Imatinib (400mg).


Any thoughts would be very welcome.




Hi Roza, Your consultant is just being a little cautious. Statistically the difference between 0.187% and 0.3% is not significant by itself. If your next test is an increase from 0.3% that starts to become a trend and they would start to think that something might need to change. 0.187% at 9 months is a pretty good outcome so likely you have nothing to worry about, and the test in 4 weeks should put your mind at rest. I know it is easy for me to say that 14 years in to this, but you're well below 1% in a good timeframe; you're in a pretty good place and any changes in trend need to be monitored and if necessary acted on.   

Many thanks Alastair. That's reassuring and hopefully I'll be able to come back with good news then.

I would wait to see if you have a trend before any switch.  It may just be a plateau with a drop coming up.  Alistair is right that 0.3% at 12 months is pretty good.  I have seen my results stay similar within 3 months (and even rise a bit) followed by a drop in the next labs.  Hope your 15 month turns out exactly that way.

Many thanks, I think there is so much focus on the 12 month point from the time of diagnosis, it just makes it a bit more nerve-wracking than it probably should be. Really appreciate the support.

I was checked for a mutation due to sub optimal results at 3 months. It seems to be a standard medical protocol when there's a blip in bcr/abl progession.

I agree the extra tests are from caution, nothing to worry about.

There are 5+ drugs for cml so even in the case of mutations you should have no issue. Cml itself is caused by a gene mutation, you're already a mutant :D

...just remains to be see what kind

Ps there was no mutation, im still on 400mg imatanib, with time side effects diminished. Do a search on this forum for tips on managing them. Best of luck!