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Imatinib plateau

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Hi all

I've been on Imatinib since Jan 24. every set of quarterly blood results since starting has shown a downward trend until now. So
2.5%(apr 24)
0.25% (jul 24
0.1% (oct 24)
0.033% (jan 25)
0.011% (apr 25)
and most recent 0.012% (july 25)

As my response since starting the treatment had been good i have been positive about things and was just expecting it to keep falling to get below 0.01 and into MR4. The nurse who gave me my results said that i would be monitored and if the BCR ABL goes up then the hematologist may switch me to another drug. This is not something i have been wanting to think about as i suppose that would mean the CML has become resistant to imatinib and it rules it out longer term. I have been doing some research and found an article stating if the BCR ABL remains above 0.01% then that is designated as only being a "sub-optimal" response to the meds.

Has anyone else had a similar experience where their BCR-ABL has been falling and then hit a plateau and how did it play out after that? I appreciate that everyone's situation is different but interested to hear people's experiences

Also i am considering going private with BUPA. when i was diagnosed with CML i was told by the hemotologist that whether NHS or private Imatinib is the first TKI but then after that if there is a need to change treatment then there are differences with the private treatment pathway in the uk compared to the NHS. He implied that NHS will follow a fixed route whereas there is more flexibility with which treatment is used next on the private route.

Any advice would be appreciated

thanks

Joey

You’re doing great. You hit MR in record time. Give it time. Be patient. You could be a good candidate for TFR someday.

Hi Joey,

Your results are fine. The difference between 0.012% and 0.011% is statistically insignificant and within the margin of error for the BCR-ABL PCR Test. You are still pretty much at DMR (0.01%), which is excellent in just over a year of treatment. It took me 2.5 years to reach MMR (0.1%). As long as you remain below 0.1% (above this level would be sub-optimal), there is no cause for concern.

I have received NHS treatment for CML for the past 10 years and have never considered going private. All 6 TKI's are currently available on the NHS (only 2 were available when I was diagnosed). Yes, you do need to meet certain criteria to switch TKI, but since your results are still good, there should be no need to contemplate this.

Fingers crossed that your next test is lower and this result is just a 'blip'.

Take care,

James

Hi Joey,

The same thing happened to me and my hematologist was not worry at all. After 3 months I did another BCR test and my results got better.
I know it might not be easy but stay positive and if you have to change medication it is not always so bad.
I was on Imatinib but I was struggling with the side effects so then I was forced to change to Desatinib. Since I changed I got my life back!
Hopefully your next BCR result will be good.

thanks for this. That's encouraging to here your experience. I just started to assume that there would only be one outcome and that would be the BCR ABL going up. Ive had a few side effects of the imatinib myself - the chronic fatigue but also its affected my kidney function and bladder wall has thickened. After various precautionary ultrasounds and scans recently thankfully there's nothing else to see there, its just the imatinib taking a bit of a toll.

thanks Joe. think i've got to just learn that there's going to be bumps in the road on this journey

thanks James for sharing your experience. I think i just convinced myself that if the % was falling significantly each time and then hit a plateau that inevitably the trends going to reverse. I suppose time will tell and i need to persevere and be patient.

Hi Joey

I'll echo what others have said - you're doing great and have reached the response in record time! I've also done a lot of reading and have never seen the view that a result above 0.01% is "sub-optimal" - maybe that is a new way of thinking about it, but traditionally the guidelines are that you should reach MMR / below 0.1% after 1 year as an optimal response and then it should continue falling slowly. MMR is still regarded as the gold standard of treatment.

Maybe my experience will give you some hope: I was diagnosed in 2015 with 13% blasts - bordeline accelerated phase - and was put on dasatinib 100mg. My response was incredibly slow and was considered sub-optimal as I was still above MMR at 12 months (0.36%) and 18 months (0.28%). So I definitely plateaued above MMR. Nevertheless, we persisted and I eventually hit MMR at 0.042% after 24 months. I still remember my doctor's words: "You're doing fine, but not great. This means that you'll be on the drugs for the rest of your life because your response isn't fast enough for us to try coming off them, but you're out of danger."

I had a tricky time with all sorts of issues that I won't bore you with, and eventually in August 2022 I had no choice but to come off the drugs for what was supposed to be a short while due to side effects, with BCR-Abl at 0.003%. Weirdly, it has stayed there or thereabouts for 3 full years now - it bobbed up to 0.011% at one stage and then back down to 0.003% currently - and I haven't taken any medication since 18 August 2022. My doctor reckons there is a good chance I will stay in treatment-free remission now.

So it is possible to be a slow responder and still have a good long-term outcome, as my experience demonstrates! Try not to get too disappointed when the numbers come up, as there is a good chance that they'll be down again on the next test.

Hoping for your continued recovery with best wishes from Johannesburg, South Africa.

Martin

Hi Martin

thanks for the message. that really puts things in perspective for me. i have been so focussed on getting results back checking for secondary cancer (which thankfully has come back positive after various tests) i was just taking it that my BCR ABL results would keep going down so it was a surprise. But then i am a relative newby to this game compared to others as i was only diagnosed in dec 23 and as my results have been good so far i have not needed to research too much on the actual cancer (and maybe not wanted to) and have been more concerned with the effect imatinib has had on my kidneys - although this is being monitored every 3 months.

i find this forum really helpful as although everyone's journey is unique, it helps to hear from people who are walking the same path, and your experience is definately something others like myself can take encouragement from - so once again thanks for taking the time to respond

Joey