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MMR finally

Hi all,

I don't post often on here, but when I have done it's usually been me stressing about my slow response!

I was diagnosed in Dec 2019, and after just over 2.5 years I've finally reached MMR.

I started on Imatinib, but failed that after about four months and switched to Dasatinib 100mg daily, which I've been on since, despite some bumps on the road and blips in my BCR ABL readings. 

I just wanted to check in again, and say thanks for your support. I'm an anxious type but hearing from similar posters in my age bracket (I was 41 when diagnosed) with a similarly slow response (@alexmcpee and others) but eventually reaching MMR has been immensely reassuring!

And similarly I just wanted to pass on my encouragement to others who might read this who are presently in this situation - even if initial results are not very encouraging and if your response is a slow one like mine, it's still possible to reach MMR eventually. 

All the very best,
Phil 

Congrats Philmc! Always good to hear positive results! I wish you continued success. You are an inspiration.

Good to hear. It can be stressful but I agree that hearing from others is reassuring (Alex, ipmaki, etc). Same situation for me and latest results still MMR.

Hi Phil ,

Thanks for your encouraging post . I was diagnosed September 2021 and have failed to meet any targets so far. Started Imatinib which worked for several months. Changed to Nilotinib after investigations for mutations/resistance toTKI . Still waiting for results of June 9 month BCR .So many people write glowing reports of rapid drop in numbers that I feel a bit of a failure. Your slow progress to MMR is really encouraging. Thanks for sharing.

Stay well 

Mary

 

 

Hi Phil

Congratulations on your MMR from another slow responder (I also took around 2 years).  It's amazing how a lot of the anxiety and worry around the CML disappeared for me once I reached this "magic" figure that seems to mean so much to all the doctors and clinicians.  It's great news that you finally hit that target.

In my own case, I have had a steady downward response and am now bouncing around in and out of MR4 / MR4.5.  I doubt I'll ever see undetectable but I'll take it after spending such a long time trying to get below that 0.1%.

Onwards and downwards.

Best wishes from South Africa

Martin

 

Congrats on reaching that level. It's always nice to know you're not alone in situations like this. I'm 35 and was diagnosed 4 years ago, I think it took me around the same time to reach MMR. Like you, I get anxiety just thinking about my quarterly test results, and even stress when my results fluctuate between %0.0002 & %0.00088. But it helps to read that there are indeed other people experiencing the same things you are.

 

Congrats again :)

Congratulations!  I am also a slow responder (.1 after 2 years).  You got there and you’re going to be just fine!  

Congratulations!  I am also a slow responder (.1 after 2 years).  You got there and you’re going to be just fine!  

Thanks all!

The guidelines and milestones are there to help, but for slow responders they can be somewhat counterproductive. Some of the printed material I received that set out MMR as a target by 1 year - and the memorable line that "most people don't need their TKI changing" - although well-intended and probably true for the vast majority, was not particularly reassuring in my case. I think it's been mentioned several times on this forum, but a doctor at Imperial more helpfully remarked that no study had shown a survival difference between 1% and <0.1%. While my haematologist was (rightly) concerned as to whether I was taking the pills, I'd never missed a dose, I'm not sure that I was completely believed and this only added to the stress of the consultancy appointments. At one point I was referred to the hospital for a potential heart problem, which was assumed at the time to be a side effect of the drugs, but has since cleared up and looking back was equally as likely to have been stress related. 

I hope the official advisory materials are improved in the future, but in the absence of that this place has helped me enormously as I've already said!

Take care folks!

Best,
Phil

Hello everybody,

Diagnosed in November 2016 (date burned into my memory) and finally achieved MMR 0.08 10/05/22, 0.15/07/22 after five and a half years. Though I don't think I'm the slowest 'turtle' responder. Luckily for me my consultant, though arranging monthly tests to keep an eye on my blood counts, didn't pass on the stress of my not achieving 'clinical' guidelines. 

Just keep on keeping on and congratulations.

RosieM

Fantastic news exactly 2.5 years for me too. The guidelines cause a lot of stress and anxiety and I believe they are out of date somewhat.
Enjoy the news it becomes a whole different beast when MMR (A pussy cat in my case.)

Alex