You are here

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!


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. 



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

Been waiting since Monday to get my PCR results back. Anyone have any good tricks to keep the mind off waiting? I think waiting for results is the hardest part of CML!

Yeah this part of CML truly sucks the anxious waiting in my opinion is very unnecessary. In the UK I wait 4-5 weeks for my results and when I check the time stamp of when the results were complete it’s about 1week after the draw so 3-4 weeks of nothing is completely unacceptable in my opinion.

But overtime it does get easier. I had a draw 3 weeks ago and still have until 21st May to get the result when I know it’s defo available to put me out of my misery.

The way I look at it too is no news is good news when it comes to any test. You’ll learn more as I have to just get on with things in the comfort that our meds work. And I am sure if we lost response  or had a large rise the docs would be quick to take action. But who knows health systems are crippled somewhat these days.


Thanks Alex for the response! Just particularly nervous this time around with the rise I saw in the last draw. Fingers crossed!

Sidenote on waiting times and cost
I have a reimbursement based insurance and its costs over 1000usd per bcr/abl and full blood cout where i currently live. It takes 2-4 weeks to get the results and the tests from various patients are batched every two weeks, i assume because we are rare.

Ive never paid less than 500usd per test (except in africa). Worth considering when you speak about test times in the uk.

I guess I should consider myself lucky on that front. I’m also in the States and it takes about 10 days to get results back. Thankfully the cost is covered by insurance!

Blimey thats such a lot of money. I do feel sorry for the US health system. We are so very lucky here in the UK and shouldn’t complain but it’s all relative isn’t it.