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It has been 2 1/2 years since my son was diagnosed with CML. He was initially on Dasatinib, but switched to 400 mg Imatinib due to a liver enzyme issue. We just got his latest BCR/ABL results, and for the first time, he has had an increase. He has proven to be a turtle, and after 2 1/2 years, has not achieved MMR.

Apr 2022 - 50.6635%
Jul 2022 - 25.6086
Oct 2022 - 4.3022
Jan 2023 - 0.8209
Apr 2023 - 0.5972
Jul 2023 - 0.5200
Oct 2023- 0.4792
Jan 2024 - 0.3298
Apr 2024 - 0.2919
Jul 2024 - 0.2625
Oct 2024 - 0.3363

I take comfort in the fact that he has been below 1.0% since Jan 0f 2023. However, it seems he has plateaued and has now seen a rise. I am sure at his next meeting with the hematologist that there will be a discussion about either a dose increase or a switch of medication. Is changing dose or medication reasonable at this point, or should he continue to stay the course? I know that one rise is not a trend, so do we wait another 3 months to see what happens on his next test? I am admittedly more anxious about this than he is. He is young, and I know that the hematologist would like to see him get to that magic 0.1% much more quickly. However, I also know from others on this forum that bumps up and down are not unusual, and that even turtles can eventually get to MMR. Would appreciate some thoughts on this as we weigh his options. His adherence to the dosing schedule has been good and consistent.

I would not consider this to be a big jump to cause alarm. I was not able to break 0.3 on Dasatinib 100mg for close to two years before switching to Nilotinib. Nilotinib seemed to do the trick. I think younger people do not respond as fast as others. Nilotinib got me under 0.1 and I have safely been under 0.1 for close to 5 years. I have always had ups and downs. I no longer worry about them if they are close to each other. When I switched from Dasatinib to Nilotinib I think it was a jump from 0.38 to 1.2 (which did cause alarm).

Some people take years to break under 0.1. I think it will happen soon on its own, or you can ask about Nilotinib or another TKI. In either case the "uptick" in the results is no cause for alarm IMHO. Look for two or three trends up (if they are close to each other), or a big jump up before thinking about making any changes.

Keep in mind that CCyR has the same lifetime expectancy as MMR. Under 1.0 is absolutely an important marker, and you seem to be safely there. Hope you guys see a break downwards very soon. God Bless.

Your son had a cytogenic response in less than a year. Now he’s heading toward MMR. It took me 4 years to get a cytogenic response and a year later I made it to MMR. Everyone is different. Hopefully his side effects are minimal. The main thing is that the TKI is eliminating the bad copies of BCR/ABL. If he plateaus it should become obvious at some point. From what I read on this site, Imatinib side effects aren’t as bad as on other TKIs. So take solace in the fact that while the process is slow he’s not putting a strain on his body as much as maybe being on some of the other TKIs.

In overview his BCRABL has plateaued between 0.33 and 0.26 for the last year - this range is within the level of repeatability for the test process - i.e. effectively they are the same reading. I would expect the haematologist to see what the result is in January; if it goes up again above that range they will likely want to discuss changing something. I plateaued at 0.6 for about 9 months, and the suddenly got a 0.04. Good luck.

Thank you everyone for your kind and thoughtful responses. I admit to a few tears being shed and a very deep exhale. I so deeply appreciate all I have learned from lurking about on this forum and the gentle reminders to be patient.

This is such an odd disease. As a mother, when you hear your child has cancer, you feel the need to marshal an army. You expect a flurry of intensive medical treatments and interventions. Chemo, radiation, surgeries. Anything and everything that can be done. To be told that treatment consists of taking one pill a day, blood work every three months, and the occasional visit with the haematologist, in addition to the fact that this can now be treated as a life-long chronic condition, you are left feeling a bit untethered. Everything I thought I knew about leukaemia was wrong and outdated. I still struggle with the disconnect between what I thought I knew and the current clinical reality. To say that I am grateful for modern medical science is an understatement.

I can’t speak for others but I too felt uncomfortable for many years. But over time you get accustomed to the condition and, it becomes routine.

Hi there

Your son like me and many many other "youngsters" on here take longer to respond.

The MMR milestone causes a lot of unnecessary worry, I like your son took 2.5 years to hit MMR. I hang around 0.3 to 0.1 for 2 years before hitting the MMR3 at exactly 2.5 years.

I am now almost 7 years into treatment and my latest reading was 0.008 (mr4). Everybody is different and it just takes longer for others. The trend is the most important and your son's is down upart from the 1 "uptick" which I had also and it caused a ton of stress. 0.2 to 0.3 is really the same result i personally don't consider this an up although on paper it is. As an example 6 months ago I was 0.009 and 6 months layer I am 0.008. I tiny change and really the same result as the last. Defo a turtle like many on here. Its a marathon not a sprint always helps me out.

He's in a good place just ride it out he has the same survival chances as anyone who's in deep remission. Fluctuations are very normal and I am sure like me he's going to be absolutely fine. If this disease didn't have the cancer connection you'd be less worried. Bloods simply fluctuate minute by minute. He could have PCR test the next day and it's very likely it would be different to the day before.

Hang in there and all the best.

Alex

Your son has tons of options if you decide for a switch. 4 other TKIs and 3 in trials at the moment.

As many agree on here, it's probably not needed at the moment. Imatinib is the slowest, least potent TKI. The fact that he's holding CCyR on imatinib is also a great sign for prognosis.

I have a similar history over 3 years and regrudeounly switched twice.

100%
2.4 Dasatinib
0.4
0.7
1.0
2.0
0.47
0.65
0.40 Bosutinib
0.50
2.0
0.06
0.21
0.10 Asciminib 80
0.22
0.41
1.0
0.32 Asciminib 160
0.22
0.07