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Should I be concerned?

Hi all,

Haven’t posted in a while and wanted to get some thoughts.

I was diagnosed in Oct 2019 and never got past 20% with my BCR-ABL on Imatinib after 8 months of treatment. I switched to 800mg of Nilotinib and after 3 months went to 1% and then down to .05% after 6 months (where I was thrilled). Just got my results back  after another 3 months and have now bumped up to 0.3% (over a 1/2 log increase). This doesn’t seem like a PCR variation, but would appreciate any thoughts and feedback? Time to worry?
 

Thank you!

Hi,

before you start to worry you should wait until your next PCR result rather than take this one test as an indication that your BCR/Abl % is rising. I am not sure why you said that this result 'does not look like a pcr variation' ... individual pcr tests can, and do, go up or down, you should be looking for a trend rather than one single result. 

Sandy

 

Thank you Sandy for the reply! As you can tell I’m a worrier. I guess that was really my main question. Are fluctuations of this magnitude normal? Have others seen similar blips of this size and then everything was fine there after?

Thanks Again!

Hi KingBurger,

I have been on 100 mg Sprycel for the past three years and have generally fluctuated just above 0.1%, which is considered by CML specialists to be in a safe zone at this duration. During this time I've had my numbers bounce from 0.256% (12 months) to  0.945% (15 months). A follow-up test at 16 months showed 0.315% so there can be a relatively large fluctuation in numbers at this magnitude within the test. I know just how scary these fluctuations can be, but hopefully that makes you feel a little better. If your oncologist hasn't suggested it yet I would probably request a second test, sooner than usual, to confirm the increase but at this point I wouldn't worry too much. I would also look into whether this was the same lab performing the test.

Thanks,

Ian

Thanks Ian, that’s really helpful. I go back in a month for another check.