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BCR ABL Increase

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Hi All

Hope you're all safe and well.

Advice needed please. I was diagnosed in December 2020 and my BCR ABL got down to 0.2% on 1st September 2021...(from June's blood tests) and then 0.000% on 24th November 2021....(from September blood test) consultant was really pleased as was I.
Now just had call from consultant to say my BCR ABL has gone upto 1.1% on my blood tests in November 2021.

The only difference has been my 3rd primary covid vaccine a week before I went for my blood tests. I've put a bit of weight on....but kept walking, working full time, kept taking Imatinib at 10am every day.

I'm now getting my self in a state over the increase. Consultant is going to rerun tests on 24th January to see if a blip...but that's 4 weeks of worry until results come back.

Any advice would be greatly appreciated.

Thanks all, sorry for the long post 😊😊😊

Take care

Deni

I would have a re-test to confirm it is a true 1.1% and not a lab or clerical error.  If it is then you should test for mutations to see which other TKI will benefit you.  The good news is that you responded pretty well from the look of things and another TKI might just do it.  I would add that I switched at 18 months when my test showed 1.2% and another TKI brought it back down and slowly keeps going down (or it was a false alarm/never re-tested).  53 months on and still MMR.  There are 5 or 6 other options to try (one very recent) so there IMHO is no reason to spend 4 weeks panicking.  You have only tried the very first TKI available from the beginning, and it works for some people, but there are other stronger options.  

Hi.. completely concur with Colorado guy, there is nothing to worry about.. I started on Imatinib and responded well then moved to Dasatinib to try and lower the BCR percentage down further as it was stuck at 1-2% for nearly 2 years..  Dasatinib did not agree with me so moved to Bosutinib and now responding really well with no side effects. My journey has been 3 years to date and others take a lot longer to get to the position you did early on. There are lots of options still and blips are quite common in this journey I am led to believe. Put it to the back of your mind and try not to worry about small percentage swings. Enjoy life. 

Thank you so very much for your replies. I suppose it is still early days and I am a worrier anyway..... more so since diagnosis.

Hopefully it's a blip and I can carry on as before. If not then we carry on the fight.

Thank you again....it is very much appreciated.

Take care

Deni x

My son also responded very well and in 9 months his bcrabl reading was just 0.142 on Dastanib. But after that he got the same reading. He also gained weight this time.
I hope the next results in March are undetectable.
Is gaining weight has anything to do with the bcrabl reading or treatment?

My consultant hasn't been bothered. He just doesnt like unexplained weight loss as this can indicate the CML is too active again.

Deni x

Ok thanks
Weight gain is better that way.