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BCR-Abl level up

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I was diagnosed in January this year. My BCR-ABL at diagnosis was 18.9%.

At 3 months on Imatinib it was 12.6%.

At 6 months 0.045% which my consultant said was a miraculous result.

Then disappointingly 6 weeks later it was 2.3%.

(I await the result of my 10 month test). 

My consultant agreed the last result was a disappointing. 

It's my first knock back on this path and I can't say I'm coping well with it. Maybe I got complascent with my results being so good on Imatinib, but I think I realise I am really not okay with it all yet.

My blood results remain good and improving but this BCR-ABL up turn has scared me. Especially when the consultant asked if I was indeed taking my tablets.

This may sound silly but I have even thought that it might be that my recent batch of Imatinib has a use by date just 3 months away. 

The consultant suggested one of the results may be wrong or inaccurate...but this only serves to concern me more as you hope these critical tests are accurate and can always be trusted.

If it continues to go up he says the next step is to increase my dose on Imatinib but as the side effects are just starting to settle I am very concerned about an increase. 

 

I can understand your concern, Helen. 

It may be that your second "miraculous" result was less than accurate, as this sometimes happens and the other two results show a reasonable decline.  There are a lot of things that can make the tests less accurate and it may be worth while asking your doctor about that.  I hope your next test shows more progress in the right direction.  Remember that this is "a marathon, not a sprint", as I was told when I was impatient for a better result. 

Good luck!

Olivia

Hey there

Sorry you are feeling stressed by the numbers, however do remember, at some point they are just numbers...indicators! The important thing is how you FEEL physically and if you can get on with your life, if thats ok then stressing over numbers is counterproductive for you. Many experts are concerned about giving patients regular figures exactly for this reason ie that they stress over small differences when its not relevant either clinically or to the patients day to day life

It strikes me that you should have gotten a few more bcr-abl tests in the last 10 months if they were worried about it, but thats water under the bridge now. 

As to my own story, I had poor results at 3 months and decent results at 6 months, and a very fast molecular remission (by 10 months). What changed between 3 and 6 months? I did. That is to say, I did not realise that the drug can be very sensitive and I started to be very regimented on taking the dose at EXACTLY the same time each day and the results improved. Around the 4 month mark,  I got put on Tasigna (because of the poor results) and then put back on imatanib (because of an eye issue that in the end was unrelated to the meds) but was put on higher dose 600mg. However I felt it was wrong for me, I did my research and thanks to a video on this site, I learned that time to molecular remission has no correlation to life span.

I decided that 400mg of Imatanib felt right for me, I asked to be put back on 400mg and the doctors agreed. I decided it was enough and (low and behold) it was enough. It may sound a bit hippy but I do think the mind has a big impact on the body. My attitude ha always been that CML was going to be minor inconvienence on the way to the rest of my life. Now 18 months later the CML is not causing me any problems.  (I have some difficulties with retinal issues due to how late my CML was discovered....but thats another story)

You have a choice to live your life or worry about small percentages, TBH 2.3% at 6 months is a pretty ok result irrespective of what came before it and if you dont want to up the imatanib yet then dont do it :)  Decide that it will be enough and it just might be. And make sure you take it at exactly the same time each day, if you are not already doing this, see if it has an impact.

For info my results were: 33% at 1 month, 15.9% at 3 months, 13% at 4 months, 4% at 5 months, 0.042% at 7 months, undectable by 10 months. Bear in mind between months 5 and 7, I had taken Tasigna, Imatanib(two different western generics and Veenat(an indian generic).  

Keeping my fingers crossed for you.....my feeling is that you can try Imatanib 400mg for another while and there are different doses and 4 other medications to try...it'll be ok. xx

Thread continued from: 
BCR result