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First BCR-ABL results sub optimal

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Hi all

i was diagnosed in August 2021 and started in 400mg Imatinib. Had my first blood test in November, but never got told the BCR-ABL results until today. I had my second blood test last week, so I’m assuming my 6 monthly results I will get in 3 months time.

anyway, at 3 months my BCR-ABL was at 16%. The doctor said this is sub-optimal, but “not bad” and to carry on with imatinib until my next appointment.

im feeling really anxious about this and just wondered how worried should I be.to get  From 16% down to <1% at 6 months seems unlikely so I guess from experience is it likely I’ll need to change meds etc?

thanks in advance  

Dan

Hi Dan,

It's really difficult not to be anxious when first diagnosed. Your doctor's use of the term 'sub-optimal' will not have done anything to reassure you, but their qualification of 'not bad' should.

16% at 3 months is not a bad result when you compare it to the ELNet CML guidelines of an 'optimal' response of  <10% at 3 months. Many people take a little longer to get an 'optimal' response and if fact it is very likely that you will see a bigger % drop when you get your result from you current PCR test.

You should not have to wait until your next appointment as the lab should be able to process your latest test within, at most, 2-3 weeks maybe sooner.

I suggest you contact your doctor and tell her/him that you are feeling very worried and would like the 2nd PCR result as soon as possible. 

I am not sure where you are being treated, but your doctor should be able to call you and give you the result over the phone. You obviously have TKI responsive disease so take heart from that. 

Sandy

Thank you so much for the reply Sandy, I really appreciate it. 
 

I am being treated in Wolverhampton, and must admit to feeling a bit let down in terms of care and support aside from when I was admitted to hospital and diagnosed. I didn’t get told my results from the first test until today despite chasing. My consultant is a locum, and I spoke to someone else today, but I know who the hospital consultant is so I can contact them. They said they have to send the bloods off to Birmingham for analysis which takes 4-5 weeks but will ask for a call as soon as they’re ready.

 

thanks again,

Dan 
 

 

Hi Dan,

Yes I understand. Queen Elizabeth hospital is a centre of excellence for CML etc. so maybe you could ask for either 'shared care' or preferably a referral? 4-5 weeks seems an overly long time to wait, especially as you are newly diagnosed.

Sandy