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BCR ABL increase

Hi all. I wanted to reach out to see if anyone has had experience with increasing BCR ABL and mutations, or has any information to offer. 

BCR ABL

diagnosis 36.6 %
could not tolerate 600 mg Tasigna so reduced to 400 mg
3 mo. 7.3%
6 mo. .86 %
9 mo. 2.97 %

I just got tested for mutations but will not get the results for a few weeks. I know I need patience, not a strength of mine, but my anxiety is through the roof. My doctor talked to me about starting Bosutinib but in the meantime upped my Tasigna to 600mg. What I can not stop thinking is, I will be on a 3rd generation drug in less than a year and that terrifies me. What if I run out of drug options? What then? I feel the same panic as I felt with my diagnosis but at least then my doctor told me I had several options with drugs. This completely blindsided me because I thought things were going so well. Any advice and information would be much appreciated.

Thanks,

Becca

Hi,

Retest and see,it is just 1 result,I think you need to see a pattern,this maybe just a one-off.

Thanks for your reply. I want to think it is a one-off, but I had not seen many share BCR ABL numbers that increase that much in 3 months unless there was a mutation. And I am just not finding much information on mutations. 

Hi Rebecca,

You might find some information that is helpful by reading the transcript of the last iCMLf conversation "Treatment of CML patients after failure of 2 TKIs" - we usually share the links to these conversations on the pinned post at the top of this page - I have shared the link to the video on that thread.

Best wishes,

Sandy

Hi Rebecca ,

At one point my BCR ABL went up 14% in 3 months. I was tested for mutations but didn't have any.  I had to change TKI but results started dropping again. My CML remains poorly controlled but just wanted you to know that a big increase doesn't automatically mean a mutation.

The webinar that Sandy suggests was very interesting.

Hope you get some good results soon.

Mary

 

Thanks for the suggestion. I had tried to watch it earlier and could not get it to work. Today I searched their site for the recorded talk. It contained the information I was looking for-options moving forward. 

Thank you!

Hi Mary,

Thanks for your reply. I have been so focused on managing side effects and getting back to life that I did not pay much attention to cases when the TKI did not work well. Now I am scrambling for information. I appreciate you sharing with me. I am curious as to what you mean by poorly controlled? The webinar was very helpful and eased some of my anxiety. Knowing there are more options than just a few more drugs out there helps tremendously.