CML coming off chemo

I just had a visit with my haematologist and she told me that the hospital has been going through all their Chronic myeloid leukaemia cases and looking at who might be able to come off their chemo.
( I knew that research on a worldwide spread had looked for people who had tested negative for mutant white cells with Chronic myeloid leukaemia for a number of years, to trial taking them off their chemo medication. The results were promising and the research was widened to more people.) My friend’s London Hospital was part of this and she may stop her chemo.
It is wonderful to see the research going so well. Patients records were studied and decisions were made about which patients could be considered. My consultant told me that my records were looked at but I did not meet the criteria because I had been at the blast phase and it is not considered safe to include us.
I think the roll out will be slow and steady and those patients who have had negative results on their BCRable for several years and maybe whose Chronic myeloid leukaemia was found at earlier stages will be under consideration.
I would like to hear what news the experts have of this and if anyone has taken this step.
I was a touch disappointed that I could not benefit, for all of a day,!but the joy I have from seeing the results of wonderful research and those amazing researchers and knowing that people will practically benefit in such a big way is fabulous. I am sure that their blood tests will continue but not taking strong medication for your whole life was always their goal, with safety nets.
It obviously takes time and group meetings to discuss each patient so hospitals will move at an individual pace. I do not know how many years you have to have had negative scores for either but it is a little golden light in the future for many people.
I would not want to get people’s hopes up too much but it is great to see research bearing fruits.

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Hi @GrandmaJo great to hear from you.
It’s news to me although I have to say I do not move in medical circles.
I will copy your post to the Blood Cancer UK nurses in case they can comment.
All I can say is anything that entails reviewing patient records is good news to me.
Really look after yourself and thanks for this post.

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Hello @GrandmaJo, thank you so much for taking the time to share this information with our forum. As you say, it’s so wonderful to hear about the results of promising research in the world of Chronic Myeloid Leukaemia. It would be fantastic to hear of anyone personal experiences with coming off their treatment.

There have been lots of exciting trials exploring reducing or stopping TKI therapy in Chronic myeloid leukaemia.
One of which was the DESTINY trial which ran in 2017, (which was partly funded by Blood Cancer UK)

If of interest to you, here is an interesting webinar all about treatment-free remission with input from a team of Haematologists. Treatment Free Remission (TFR) and Dose Reduction in CML – what is right for me? - YouTube This webinar discusses the results of the DESTINY trial (amongst other trials about stopping TKI’s in more detail), and also the current guidelines clinicians follow when making treatment decisions.

Finally, here you’ll find some patient information about who might be able to have a treatment-free break; (Having a treatment break for chronic myeloid leukaemia (CML) | Cancer Research UK). As you’ve already highlighted Jo, you’ll notice that there are several set criteria, one of which is that a person must not have had a history of having had history of a blast phase, alongside having achieved a certain level of response over some time. As you say, whilst not an option for all, it’s exciting to see such promising research in any event!

Importantly, anyone with Chronic myeloid leukaemia must note that you must consult your healthcare team before making any changes to or stopping TKI treatment as a particular set of criteria must be met before proceeding safely, and it would need to be done under the careful supervision of medical professionals.

Hope this information is helpful Jo! And thank you for sharing once more.

Take care,
Rachel
Clincal Trial Support Nurse

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Thank you for that.
I always remembering being told that the patients who take their tki medication without any missed doses and at the same time each day have the best responses. It is so important to follow those rules. We are in the hands of our wise consultants.

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Hi @GrandmaJo and @ClinicalTrialsSupportService - I apologise for the delay, I missed this post previously, but wanted to share my experience of coming off medication.

I was diagnosed with Chronic myeloid leukaemia 12 years ago. I started on Imatinib but then moved to Nilotinib after 2 years as the first line treatment wasn’t getting me to where I needed to be. I have now been off the medication for two years after a very gradual reduction in the dosage from 800mg daily to 400mg then 200mg. I am monitored very closely, and whilst my BCR-Abl results do fluctuate - it is at very, very, very low levels and sometimes undetectable so things appear to be under control.

Mine is a positive story - I feel very lucky. The biggest factor for me was psychological… I found it quite scary initially to come off the medication and not know what would happen. But I was very well looked after and as I say very closely monitored so any change can be spotted early.

When I was coming off the meds I was also part of a trial at my hospital so they could try and ascertain what determines whether people can come off meds or need to continue. Hopefully my participation will help to shine a light for paving the path forward for others too.

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