Positive cml

Hi all hope all staying positive

My name is Paul I was diagnosed with Chronic myeloid leukaemia ('CML') in April 2005 did know what was going to happen my daughter was 10

Started off on glevec for many years then changed to disatanib started on 100mg now down to 20mg

As of tomorrow I’m being taken off my medication as my results have been so positive over the last 5 plus years blood count of 0.001

So fingers crossed all goes ok will keep you informed of progress

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Hello @paulGrayson

Welcome to the forum - and thank you for taking time to send in your post

I was also only diagnosed in April 2025 after a few months of investigations - my heart goes out to you as it comes as a real shock at the time.

Hoping everything goes well for you - and do keep us updated

Kind regards

Mike

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Cheers Mike will do

Hope you’re doing okay stay positive :+1:

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Fantastic! :heart_eyes:
Congratulations :partying_face:
After 21 years you’ve been in this for the long haul. Wonderful news indeed, how lovely to hear this. Thank you for sharing and providing hope and inspiration to all of us here.
Health and happiness xx

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@paulGrayson, what wonderful news - thank you so much for sharing this with us as positive and hopeful stories are alway a welcome addition to the Forum. Starting treatment-free remission after more than 20+ years of living with Chronic myeloid leukaemia ('CML') is a proper milestone!

It’s natural to feel a mix of hope and nerves at this point, but I’m glad the regular monitoring means you won’t be navigating this without a safety net. If you find those feelings are weighing on you at all, we have some information and tips from others who’ve been in a similar position that you might find helpful.

Our lovely blood cancer nurses are also available to talk through any concerns you have, or if you’d just like to chat about how you’re feeling. You can contact them (for free) on 0808 2080 888 (Option 1).

We’d love to hear how you get on, so please do keep us posted, and please do feel free to offer your own lived experience advice to others on the Forum who might be earlier on in their diagnosis.

Take care,

Ceri - Blood Cancer UK Support Services

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Welcome to the forum @paulGrayson and thanks so much for sharing such inspiring news.

Personally and I’m sure others will agree that it’s great to hear positive news :grinning_face:

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Great stuff @paulGrayson, such lovely news to share! Congratulations on your longevity and remission, a dream come true I would imagine.

Perhaps a slight sense of loss might appear too, at losing this part that you’ve had to live with for so long? Not all losses are bad though, right?!

Thank you so much for sharing here—like others have said it can really help give hope and maybe even something to aim for with our own treatments.

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Hi @paulGrayson That is good news indeed. I was diagnosed in 2003 and i am below 0.01 and have been for a couple of years. I am on a very low dose of asciminib which has no side effects at all.

Fingers crossed you can stay of the medication which would not have been anything we would have though of back when we were diagnosed. The good news is you can easily go back on medication if needed. Good luck.

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Hi all so week without taking tablets no side effects

Bloods booked for 28 April will let you know results

Hope you’re all doing well and keeping a positive mind :face_blowing_a_kiss:

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Excellent news @paulGrayson, long may that continue!

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That’s great news @paulGrayson and thanks for sharing :+1:

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