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12 month PCR still no MMR

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Just got my 12 month PCR result. Did not achieve MMR. The IS is .207. The lab report says failure to achieve MMR in 12 mos means a different treatment should be considered. On Imatinib 400 mg now. What should I expect now, should I ask for a different TKI? How do we decide these things?

I know it will be OK but it’s still disappointing. I guess it means it will just take longer for me to get to a reduced dose or even TFR.

At diagnosis it was IS 49.03%, 3 mos. 5.56, 6 mos. .55, 9 mos. .37.

What do you guys think?

It’s my understanding that the 12 month time frame is a optimal
milestone. 18 months and not achieving MMR is the point where
therapy reconsideration would be considered depending on side affects.
With that being said, as long as the trend is in the right direction the
therapy is working. That you have gotten the leukemia blood cells out of
your blood, or cytogenetic response, your safe from danger.
When the leukemia is in the blood and propagating is the health concern.
What’s a few more months...Give it a little more time.

Romo

Hi Justine, You are pretty much where I was 12 months in (which is almost exactly 10 years ago). I plateaued for another 3 months and then at 18 months got to MMR, and undetectable (by the standards of that time) 3 months after. Dose reduction wasn't on the horizon back then - I started on this six months ago. I'd definitely say keep going - your results are still trending in the right direction. 

Justine, I don't think you should feel badly about this.  When I was starting out in 2009, as long as the trend was downward (which yours is), nobody would switch you or mark you as a "failure" at this point.  The worst they would call you was "turtle."  My onc at that time certainly noted that I "wasn't quite there yet," but he didn't freak out and scare me or anything, and I just steadily kept going down.  I got to MMR at about 22 months.  Different onc, different drug, cut to the chase all these years later - it has been a slow but steady downward march to <0.01% IS.  For me, who knows, this may be as good as it ever gets and, I think, that's probably fine.  Anyway, if I were you I'd try not to worry and just be patient for some more months.  You're in a very good place right now even if it didn't change.  Just sit tight - it'll happen.  (Unless you'd LIKE to switch for SE reasons - you certainly could do that.)  It's just that, since they changed the Guidelines, peoples' expectations and fears have come into play, and some of us oldsters are around to show you that turtles get there just fine.

Hi Justine, 

You’re right that the guidelines say treatment change should be considered is greater than 0.1% at 12 months.

But you’re trend is downwards, and 0.2% is not really very far from 0.1% at all. So you and your doctor can certainly follow the guidelines, consider a change of treatment and very quickly say “nope, let’s stick”. Guidelines are only meant to be guidelines. They’re specifically not called rules for this reason. If you were tested again, you may well be at MMR.

For what it’s worth, I didn’t hit MMR at 12 months and am well into MR4.5 now.

David.

Thank you, Romo, Alastair, Kat, and David. It is really reassuring. I look forward to some time in the future when I will be able to help people as you help me and so many others. Justine

Justine:

Your trend is right and you could very easily reach MMR on your next test.  This isn't a race, but reaching MMR and better does feel good. As long as you continue to trend down, you should not change treatment unless your side effects are significantly affecting your quality of life.  Nilotinib and dasatinib often get people to MMR faster than imatinib, but the long term safety profile of imatinib is better than the other 2.  If I knew 18 months ago what I know now, I would have opted to start on imatinib because nilotinib beat the crap out of me until I was able to start reducing dose (went from 600 mg/day to 450mg to 300mg and finally to 150 mg/day about 6 months ago).

By the way, you are already helping all of us by sharing in this forum.  Stay active and keep us informed.

Thank you Cmljax!