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12 month PCR no MMR

Hi all,

It’s been a while since I’ve been on here as I was taking sometime to mentally adjust to my diagnosis. Mostly I’ve coped well with day to day battles some good days some bad mostly mentally.

Anyways I am taking 600mg Nilotinib my PCRs are as follows.

Presenting PCR 13% IS. This was low and a check was performed for p190. Not detected I have regular p210 control gene.

3 month PCR 2.1% IS

6 month PCR 0.7% IS

12 month PCR 0.3% IS

I was really sure I’d be at MMR today and massively disappointingly not 😢. Never been so obsessed with decimal numbers 🙄

My consultant not concerned one bit and said the guidelines are 12 - 18 months said your doing well just keep taking the pills. He said it wasn’t ideal but I was doing fine. I realise many people are turtles but I am getting a little suspicious that something’s a miss considering I had such a low presenting PCR near the beginning of my journey. I originally had a high Sokal score and massive spleen and 330 wbc. He said if I don’t meet it by month 18 they perform a mutation test. Starting to think or as I say get suspicious about my CML. My blood counts are all perfect for over a year.

Any advice appreciated. Obviously it’s out of everyone’s control. I’ve never missed a dose. 6 months only dropped 0.4% is that turtle or super turtle? My doc is not concerned should I be?

Many thanks

Alex

 

For Months 6 thru 11, .7, .2, .3,  etc. then on month 12, .02. It can happen any time. You’ll get there, very close. Now I get .07, .03, .05, .0000, .02, etc. It sucks and will consume you. I finally tuned it out. As long as there’s no disease progression, it’s great news. 

Your trend is good and there's no reason to believe it won't continue. While it's impossible not to worry at all (I've been <.003% for 18 months and I still worry a little at times), you have no reason at this point to worry too much.  Your doc is right.  While it would be nice to get to MMR quickly, this process is not a race - some just take longer than others and there's no real evidence that being a but of a turtle is worse than being a hare.  Hang in there.

Hi Alex, I was diagnosed April 2017 and did not achieve MMR (0.0924) on imatinib until 21 months. Last checkup, at 24 months, I was lower still, at 0.049. Doing pretty well on imatinib and my oncologist didn't want to switch drugs, so we stayed the course. I'm a turtle but doing fine. Try not to worry. TKIs are truly amazing. We are so very, very lucky and blessed. Take good care!

Hi Alex

Hang in there... I know the results are disappointing and I was there myself with 0.57% after a year. But as others have said, the trend is so important and yours is downwards.

I only reached MMR at 24 months and it was one hell of a rollercoaster, with all sorts of complications. But here I am at 42 months with a steady MMR and a level that has plateaued at 0.03%. This disease DOES become easier to manage with time.

I have lost a great deal due to CML and I have also accepted that for me a stopping trial is not likely to happen. But I have never forgotten how terrified I was in the early years so can identify fully with the worry that it's not coming down fast enough.

My advice - have faith that the TKI will bring it down. Hoping for a better result for you next time!

Best wishes

Martin