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Slow and steady

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Two years ago, my now 21 year old son was diagnosed with CML. The learning curve has been steep, and two years in, I am still a worried Mom. His progress has been slow but steady. After initially starting on Dasatinib, he was switched to Imatinib due to a spike in a liver enzyme. He has been tolerating Imatinib well with few side effects. He has now been on Imatinib for two years at a 400 mg dose. His hematologist has been calm and not in a rush to change anything, though there was a brief discussion a year ago about a possible change in medication or dosage. Her attitude is anything below 1% is icing on the cake. However, after his latest results, I wonder if the discussion is not going to occur again at his next appointment in August, as he has still not achieved MMR. His numbers have been as follows:

Apr 2022: 50.6635% (at diagnosis)
Jul 2022: 25.6086%, Log 0.59
Oct 2022: 4.3022%, Log 1.37
Jan 2023: 0.8209%, Log 2.09
Apr 2023: 0.5972%, Log 2.22
Jul 2023: 0.52%, Log 2.28
Oct 2023: 0.4792%, Log 2.32
Jan 2024: 0.3298%, Log 2.48
Apr 2024: 0.2919%, Log 2.53
Jul 2024: 0.2625%, Log 2.58

I take comfort in the fact that while slow, the numbers continue to gradually improve. I have read with close attention all those people here that refer to themselves as turtles and sloths. I would be interested in your thoughts regarding discussions around dosage or medication changes vs. simply staying the course. My son is of the opinion that the drug is working, he isn't experiencing any adverse side effects, and as he is below 1.0%, he is in a safe place and doesn't need to change anything. I tend to agree with him, though you always wish things would progress faster. Thoughts and opinions would be appreciated.

It took me over 5 years to reach MMR. My doc wanted me to switch early on but I resisted as I was afraid the other TKIs had worse side effects. There are papers out there that have studied the progression of treatment on different age groups. I would encourage you to look into that. I am not a doctor but in my experience I would say your son is progressing in a positive direction.. Keep up the good work.

Joe

I would agree with your son. Below 0.1% is “optimal” but he is in a downward trajectory, even if slow, and generally anyone below 1% does pretty well. The 0.1% target is a scientific one, not one you might look for in clinic.

Persist.

BUT … is there anything around adherence? Are they taking it every single day? I don’t mean 9 times out of 10, I mean every day.

His adherence to the drug is very good. He has missed one dose in the last year and takes it within a one hour window every day. He is living at home while a student, so Mom has been able to keep a watchful eye! :-) He does not drink alcohol (doesn't like it) and eats as well as any 21 year old would. The greatest challenge is trying to convince him that his sleep schedule is important and that a little bit more exercise would do him well. Those things will get better with time and maturity. It seems that he is just one of those patients for whom this is a little slower process. Thank you so much for your comments.