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(Somewhat) newbie asking for some guidance



I'll apologize in advance for some mistakes in English since I'm from Estonia.

I was diagnosed with CML in December 2018 which was a huge shock initially. I didn't know ANYTHING about leukemia or that there are different types of it. I started with imatinib but didn't respond well to it so my doctor changed the medicine to nilotinib (Tasigna) in July. My BCR/ABL (I'm not sure if I'm wording it right) was 2% at the time so not ideal. 

Today I got new PCR test results and my BCR/ABL is 0.02% which in my understanding is a cause for celebration.

Basically what I'm asking is: am I doing okay now? I feel better, I want to celebrate a milestone but I still feel I don't understand my own condition well enough so there are some fears. My doctor told me that they won't be doing tests from the bone marrow anymore unless there is a suspicion that the illness has gone worse. While I'm happy about it (the bone marrow tests hurt like hell) I'm afraid that maybe when it's going badly they wont see it just from the blood tests. I'm not sure if it's even possible but like I said, I feel like I don't know enough.

Mbrit -

Congratulations on reaching 0.02% in less than a year. Any level below 0.1% is major molecular remission AND you will never die from CML. Over 95% survival rate for patients attaining this milestone and the other 5% die for other reasons. In other words, you beat the disease. Your focus should be on vigilance (regular PCR monitoring) and dose modification in order to lessen any side effects you feel (or even don't feel!).

It will take several years of continuous drug treatment to lessen your leukemic stem cell (LSC) levels. LSC's are largely dormant and are the reason TKI's do not "cure". Stopping treatment early usually leads to relapse. So taking your medication is very important even though your disease burden is very low.

Your next target is to achieve a PCR of < 0.01%. This level is statistically indistinguishable from "undetected". Your result would be in the noise of the PCR test in terms of precision and accuracy. Eventually you may achieve a true "undetected" status which starts a "clock" where you could consider stopping treatment to test permanent remission. But that is years away.

Read elsewhere on this forum how to improve your immune system and even "coax" your LSC's out of dormancy so they get killed. When LSC's divide, that is when TKI's can kill them. Non-dividing cells are not affected by our drugs (yet).


Thank you so much for taking the time to answer!
I feel alot more at ease now and will start researching all the new information.
Thank you again!

Also, see the resources on this site (at the top) in Patient Info and About CML.  Everything you could possibly want to know is contained in  

I have read the general info about CML but I have not been able to find blogs like the one you mentioned. It has so much great information, thank you very much!