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Hi There,
A long time ago since I posted something. I plateauted a few years with imatinib 600 (in the beginning sub optimal responder and changed after 1 year from Imatinib 400 to 600). Diagnosed June 2018.

I reached MMR after 36 months (0,05IS, 33 months 0,12IS) But reached exactly 0.01% IS one year later. After that it went a little up and down. A year ago we decided to go back to 400mg and numbers were still decreasing. Somethimes it is measurable, but sometimes no number can be given. (0.01IS is the detection limit at my hospital. After 2 times no number, it is now 0.02%IS again.

My doctor thinks I am around the detection limit of 0.01%IS.

Below are the numbers till month 57.
3 6 9 12 13 14 15 18 21 24 27 30 33 36 39 42 45 48 51 54 57 months
26 2 0,57 0,84 0,74 0,35 (600mg) 0,34 0,25 0,17 0,29 0,23 0,13 0,12 0,05 0,05 0,03 0,06 0,01 0,02 0,03 0( <0.01IS)

7/3/23
<0,01

7/6/23
0,05

13/9/23
<0.01

9/1/24
<0.01

6/5/24
0,04

5/8/24 again with 400mg
0.02

5/12/24
<0,01

7/4/25
<0.01

29/7/25
0.02 ...

What is your opinion?

I have a similar situation with Nilotinib, if I stick to 450mg/day (which is not even a recommended dose) I can remain undetected.
I am now at 400mg / day mostly because my oncologist doesn’t want me to ‘experiment’.
At 400mg I am hovering around the 0.0x range.
To be honest I am comfortable there, I’m done chasing undetectable or TFR. I have accepted that I will be on TKIs for the foreseeable future.
And I switched to Nilotinib from Imatinib and I find I remain at the same level with both meds at the 400mg / day level.
But the side effects on Nilotinib are much easier to handle. I had real bad back and bone pain with Imatinib.

JP

I do not have any side effects from Imatinib and Nilotinib is a no go because I have arteriosclerosis.