3 replies to this topic

[Floa7]

My son and I both got diagnosed with CML the first of the year, 2012. In 6 months my BCR-ABL came back not detectable, 0.1% My sons came back at 56%, His WBC was 10. We got the results today and his WBC were 7 and waiting on the BCR-ABL results to get back. The oncologist said if those results BCR-ABL were not down, it showed the Gleevec was not working on him and he would try another TKI on him. We are both on G 400mg. But he don't take his pill as faithfull as I do. Then the dx said we must have different CML because the G didn't work for him. What is your opinion of this?

Will let you know what his results are.

[Susan61]

HI:  You have a few things going on here.  First of all the Gleevec could be working for you, but not your son. People switch TKI drugs all the time so they can get the response they need.  The other thing is that you cannot miss your dose of your TKI, or of course you will not get good results.  Tell your son to take it everyday at the same time so he does not forget.  Tell him to pick a certain meal of the day to take it with so he does not forget.  My pill is part of my breakfast every morning.

    Yes, please let us know what his next test result is.  Also, let the doctor know that he has not been faithful with taking the Gleevec before you switch to another drug.  Give the Gleevec a chance to do it  job.

Susan

[TeddyB]

To start with, everyone responds different to the tki`s, so if you respond fast it doesnt mean that your son will, and it also might depend on how early it was caught and a number of other factors.

Like Susan says. He can not miss his Gleevec, its very important to take it every day, or it might not work as it should. It is very important the first months/years so that the tki can get control over the disease. Even though it is a very treatable disease, it will progress unless treated correctly, he is really playing with his life if he skips his medication on a regular basis, tell him to stop and to take his pill as prescribed.

Sorry for the lecture, but its not something that should be taken lightly.

How many did he miss?

If he only missed a few pills in 6 months it shouldnt make a big difference, but if he has missed a lot of doses then that might explain the bad PCR result.

Have a nice weekend

Hans

[CallMeLucky]

This appears to be an adherence issue.  He has to take his pills, everyday, without exception.  If he is not taking his pills consistently then it would make sense that he is not going to get a good response.  It is also worth pointing out that switching to another drug is not likely to help if the issue is adherence.  He can try every drug available but if he doesn't take it, he is not going to get the results.

If he takes his drug consistently and does not get a good response then a mutation test should be done to see if there are any mutations.  A different TKI from Gleevec may be needed for him.  But first and foremost he needs to take his pills and he should be very honest with the doctor about what he has been doing so the doctor can treat him accordingly.