Hello. I have been on Nilotinib since my diagnosis of Chronic Myelogenous Leukaemia in August 2014. Thankfully, my molecular response levels are at MR4.5 and MR5, beyond which the bad cells are undetectable. This has been stable for almost 5 years and my oncologist has mentioned coming off the meds at some point.
That’s a nice prospect but also very scary one as it means a departure from a stable condition under medication.
I understand there is precedent, but was wondering where I might find the best documentation about this? Some stats on relapse rates etc. - will have to think long and hard about this.
Thank you and all the best to all those who continue to deal with illness.
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I should add I was diagnosed in Hong Kong and am now retired and continuing my medication in India.
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Hi @Chanak a great big welcome, and a good question and I have no idea on stats or precedent.
Perhaps it might also depend what is usual practice in India.
You are also a very special, unique person.
However having been so stable on your medication for almost 5 yrs, must mean that it is very scary for you on several levels.
I will copy your post to Blood Cancer UK’s nurse advisors @gemmabloodcanceruk @laurabloodcanceruk and @heidibloodcanceruk just in case they can help you in any way.
Take your time and only make a decision when it feels right for you.
Please let us know how you get on.
Look after yourself and be very kind to yourself.
Thank you Erica,
As i understand it, treatment of CML with Nilotinib, despite its relative “success” does not have the depth of track record as Imatinib. My oncologist is recognised in the field of Haemato-Oncolgy bith in India and abroad, and feels that it is worth a try, given the steady (and good) outcomes I have been fortunate to experience.
I suppose for me, whilst it is technically a good idea, it is more a matter of getting my head around the idea of deviating from “steady state” and that comes with its own brand of nervousness!
Let’s see, I’ve asked my doctor for as much information on the matter and will let myself come to a decision in my own time.
Thanks again.
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Yes, just take your time and only make a decision when it feels right for you.
Please let us know what you decide and look after yourself.
Hi. I watched a webinair on this from leukaemia care uk a few weeks ago and i assume it is still available on their website so perhaps have a look there to start with.
I did mention the statistics on there to my consultant but she seemed to say success rates are much lower than it states. . I believe she did agree that 50% of those eligible do manage to maintain low levels of decease. I think also those that failed to maintain, easily managed to get back to their previous levels when returning to medication.
One of the main studies showed the best result was by reducing the dose by half for 12 months before going to no medication.
I do think it is a very personal decision and if you tolerate nilotinib well when this may be a difficult decision to make. Best to find all the information you can before talking it over with your consultant.
If i find the names of the studies i will post them later.
All the best.
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Try this
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Hi @Chanak I have been thinking about you, how are you doing now?
Look after yourself.
Hi Erica,
Thank you for writing. All good here. I have an appointment with my oncologist on a week’s time where we will discuss coming off the medication. Let’s see! Otherwise, it’s my golf that causes me the most excitement…
All the best
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Hi @Chanak Please let us know how the oncologists appointment goes next week and make sure you ask everything that you feeling and thinking and also any practicalities.
Golf sounds exciting to me. I pass a golf course nearly every day and there are a steady stream of people driving (in their cars !!!) in and out. The Clubhouse also have facilities that I need upon occasion.
Look after yourself
Hi @Chanak, I do hope you’re doing okay? It’s normal to be nervous when it comes to treatment decisions, particularly around stopping any treatment that you’ve been established on. It’s great to hear you have an upcoming appointment with your oncologist, as it’ll be really useful for you to share your concerns with them and see if they have any more information they can provide you to help. I thought I’d share our CML booklet with you, in case it’s helpful at all- Chronic myeloid leukaemia (CML) booklet | Blood Cancer UK Shop. Sometimes having a bit of information to spark discussions with your team can be useful.
Please do reach out if there’s anything we can do to support you ( Blood cancer information and support by phone and email | Blood Cancer UK).
Best wishes,
Tanya.
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Hi Tanya,
Many thanks for the message and the booklet. I am as comfortable with continuing my medication as i am with altering the dosage. From what i’ve read, if one elects to change anything, it appears most practical to reduce to half the current dosage and see how things pan out for at least a year.
Will post the outcome of my visit to the Doctor on this forum.
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Hi @Chanak I have been thinking about you, how are you getting on?
Look after yourself.
Hi Erica,
We’ve decided to postpone any trial of altering my dosage of Nilotinib for the moment.
I had a good discussion with my oncologist and realised I wasn’t quite ready for that step just yet.
I can sense that I’ll probably get there later, but for the moment, I’m comfortable with the (blessed) steady state I’ve been in for a few years now.
Trust all well with you.
Regards
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I am so pleased that you have made a decision that feels right for you @Chanak.
Yes, as you say perhaps you might feel differently at a later date and that is fine.
Thanks for letting us know.
Look after yourself and please keep posting.