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First BCR/ABL uptick

Hi all,

I learnt about my first BCR-ABL uptick yesterday. I know this isn't entirely unusual and it may just be a blip, but it's still quite distressing. I have to go in for another blood test next week, with a follow up appointment three weeks after.

I'm on 100mg Dasatinib, diagnosed Dec 2019. I had to switch from Imatinib, having not got to 10% by three months. I'm in CCyR, but my Dr says that if I go above 1%, he'll be forced to move me to a new TKI, likely Ponatinib, including the usual mutation tests. Apparently the success rate on Ponatinib after failing two TKIs is 50%? Those aren't re-assuring odds!

93.8 - 23rd Dec 2019
26.6 - 27th Feb 2020
12.5 - 20th April 2020
9.7 - 26th May 2020 - Switch to Dasatinib
3.3 - 13th July 2020
1.9 - 11th August 2020
1.2 - 7th September 2020
0.81 - 7th October 2020

0.67 - 2nd December 2020
0.88 - 10th February 2021

Phil

None of us like “blips” but most of the time that’s all they are. I had my first blip at the 2 year mark 0.112% upto.....wait for it...... anti climax.... 0.164%. On paper it’s up when I told my consultant it was up he laughed at me and said no this isn’t an uptick they’re effectively the same result.

Rightly so we get worried when we have an uptick but let’s think about it logically. You are going to be on these meds for life and over however long your life span will be can you honestly expect every result to be down. I don’t and I think it’s massively unrealistic to think we won’t have bumps in the road. Unless a mutation shows up that’s likely all they are. At the 2 year mark I had mutation test and had to wait for the result for 6 months for a result that never came. And by that time I was MMR @0.077% when I asked about the mutation report my consultant just goes they prob didn’t even process it as I was practically MMR anyway.

Your doc is right don’t stress over at all unless you rise above 1% CCYR (which is the most significant milestone)

So in short hang in there I rather suspect this won’t be 1st and last uptick either.

As for 50% chance on Ponotinib I think that’s BS. They 1st need to know what mutation you have and give you a TKI that is better suited to that mutation. Why mention any stat until you know what mutation you have if you have one at all is my opinion. And looking at your numbers it’s looks more like a plateau or a little resistance. That was the case for me prob the same for you. And you haven’t failed Dasatinib if it’s keeping you in CCYR!

There are plenty of us that hovered around in CCYR for sometime 1-2 years so take comfort in that too.

Alex

Thanks for the reassuring comments, Alex. I’ve just got to wait it out I guess. It’s so hard to get on with life as normal with the constant anxiety in the background. 

I get it mate I really do because I’ve been there and we all worry come test time. Yes just ride it out try to do things to take your mind of it. Harder said then done being a chronic illness but that’s all it is reduced to so take comfort in the fact you’re in CCYR a very safe place to be.

Hi,

My husband just went through this recently,but the oncologist was like it is essentially flat,even then we were very scared till the next one,luckily it dropped.Every test will cause some amount of stress.Try not to worry , hopefully it will go down next test.

So the re-test gave a figure of 0.51%, which is lower than the last but one test. 

Enormously relieved - to say that my anxiety levels have been through the roof the last few days is an understatement.

Thanks for the messages of reassurance and support.

Phil

Upticks are anxiety inducers...happy for you...onward and downward :)

Labs should implement a simple rule ... if it's going up instead of down retest using the same batch. I would gladly pay for them to do it!
From the patient’ mental standpoint it’s a painstaking 3 or 4 weeks of misery until a new result and majority of times the number is in fact lower.

I'm not sure how it works here and whether the labs have access to that info. I'm not sure why it takes so long though (something fundamental about how PCR tests work that I don't understand, I'm guessing), if the process was just a lot quicker that would be a whole lot less mentally taxing. I have to wait about 18 days each time. That sounds relatively fast compared to other people's waits. I read somewhere else on this forum I think that they had to wait 48 days. That's nuts!

It seems like a smart switch because Nilotinib approaches the disease very similar to Imatinib.  I would not be surprised to see it come down.  My doctor did switch me when I went above 1.0 but it was  a severe change like 0.32 to 1.2.  This looks more like a plateau than a sign that it is not doing its job.