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BCR ABL Increase at 9 Mts

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Apologies for creating a thread when I know there's so many others on this topic, but I am just looking for some reassurance. 

 

I've been taking 100mg dastinib since September 2021. I have had great results up until today.

• 3 month: 1.69 log reduction/(2.4%, assuming I started at 100%, I don't get reports as %IS)
• 6 month: 2.39 log reduction/(0.41%)
• 9 month: 2.15 log reduction/0.70%)

I convinced my doctor to do another draw in 3 weeks time. He was going to wait until my next appointment in August, which I understand is the normal protocol.

I did have a very mild case of Covid three weeks prior to my 9 month test, but I've never missed a dose of Dasatinib.

I know fluctuations are common. I see people jumping around 0.0x-0.00x all the time.

But given that I'm early in treatment, is this increase amount any cause for concern?

 

I feel pretty discouraged after doing so well the first 6 months of treatment. CML was already in the back of my mind after good results at 6 mos, but now it's back with a vengence.

 

 

Don’t ever apologise. We all have to air our concerns wether repeated or not, it’s part of our mental healing as much as it is our physical healing.

This thing can bounce around like a ball. And it will make your mind bounce around equally as much. I get the concern, we all do, stay below 1% CCYR and your on your way (which you already are). Blips are unfortunately a part of the journey, most of us have had them until stabilisation occurs which I am sure it will for you. On paper looks like a big jump in reality the results really aren’t too different. Next one will most likely be down. Consultants care about trends and not so much the difference between 0.4 and 0.7. You’ve got CCYR the biggest prognostic indicator that it’s mostly over for you.

I really understand that it’s hard to put this to bed until you get your next result. Accept the fact this is a lifelong chronic disorder and nothing else. I was 37 at diagnosis now 42, if I live until I am 77 can I realistically say that every PCR test that I have will always be lower than the last. I don’t think so. Get comfortable with the uncomfortable as hard as it is. You’ll be fine.

And if it helps I was 0.77 at 6 months, 3.5 years later 0.022 and approaching MMR4. Hang in there.

Alex

Thanks for putting this in perspective Alex, I really appreciate it.