Hi I just wondered if anyone has ever come off medication if bloods have normalised?
I was diagnosed with CML in 2016 and been on nilotinib since, my bloods have been perfect now for the past 5 years and BCR undetectable, today my haematology nurse rang me to see if I wanted to consider coming off the medication due to my great results, I would be closely monitored and if any raises I could go back on them. My next appointment is Jan so I’ve got until then to think about it… if I did I wonder if my immune system would be better, please could you let me know your thoughts on what you would do…thanks Chris x
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Oh @Chris4pace I cannot help but it must be a big decision for you.
Firstly, in your post you mention that it was your haematology nurse that contacted you which is good news because you have a contact there to answer any fears, questions, practicalities you might have before your appointment in Jan.
You also say that you would be closely monitored if you did come off your meds, so if there were any side effects they would be picked up on quickly and action taken.
As for asking about your immune system that certainly is a medical question.
Perhaps write down all your questions so you do not miss anything before making a decision.
I will copy your post to the Blood Cancer UK nurse advisors in case they can add anything @BloodCancerUK_Nurses
Please let us know how you get on.
Take care of yourself
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Thanks Erica, my nurse is just so lovely and always on hand if I ever need advice… I will be going in armed with all the questions… 
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Hi Chris
Firstly welcome back & also so very pleased too hear of your excellent blood results. This really does sound like a personal choice for you too make & it’s good to hear that you have such a lovely nurse. I expect it us quite a hard decision to make but sounds as though your team will be with you all the way. As @Erica says have a think & write down your thought & questions. Keep us posted about your decision Take care & keep being well 
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Hello there @Chris4pace
It is very good news to hear that your CML is so well controlled. Nilotinib is not known to suppress your blood counts like chemotherapy does as is targeted to inhibit the action of the abnormal protein (BCR-ABL) that signals cancer cells to multiply. So I would expect that if you blood counts (Full Blood Count in particular) in normal now then that should continue once you stop your treatment.
As @Erica and @JoJoflowergirl mentioned, being prepared with the questions about this for January (or before if you need to discuss) is very wise. I would also add what parameters would there be to re-start treatment, so that you are aware of what the team are looking for?
I do hope that helps and keep in touch,
Kind regards
Gemma
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I wonder if you have thought about just reducing your dose to start with if you are concerned. This has been done in research and proved to be a good start and then you can either progress to no medication or stick to a reduced dose. I have reduced my Nilotinib dose 3 months ago and all good so far.
Good luck x
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Thank you for your advice, I have wrote some questions down and no doubt I will have a million more by the time I go for my appointment on 24/01/23 … I will keep you update… hope you are all well x
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Hi @Chris4pace Please do let us know how you are doing and how your appointment goes tomorrow
Take care of yourself
Hi Erica hope you are well, my appointment was cancelled on Tuesday due to no consultants being available, it is rebooked for the 7th Feb, that’s the day I retire from work (9years early) 
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Oh @Chris4pace I get all keyed up for appointments and emotionally I do not take it well.
That is typical that the appointment is rebooked for 7th Feb on the day you retire.
Please let us know how the whole day goes and how you feel about retiring 9 yrs early.
Look after yourself
Hi Erica hope you are well, I’ve had my appointment today and all went well, I have decided to come off the medication and be monitored closely for the first few months then 6, 8, & 12 weekly. I’m going to Cape Verde in the morning so the consultant advised I would be better off stopping them when I return as I would possibly get side affects from coming off them…she said that my bloods have been normal for 5 years and should be fine off them… love Chris
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All did go well @Chris4pace didn’t it and good advice.
Have an absolutely wonderful holiday in Cape Verde.
Please let us know how you get on over the next few weeks
Hi Erica hope you are well, I’m back from cape verde and had a lovely rest…I would like to give an update on coming off Nilotinib, I was advised not to come off them gradually and to just stop altogether. It has been a week and a half now and the only symptoms I seem to be getting at the moment is a bit of bone pain in my back and arms but not painful enough to take pain relief, I have noticed I’m not as tired too, I’m feeling a little anxious about my appointment in 2 and a half weeks incase there’s any changes… x
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Hi @Chris4pace Cape Verde sounds wonderful and please do let us know how you get on at your appointment in 2 1/2 weeks time.
Perhaps just keep a diary of your symptoms, the severity and impact on your life and if you get worse please contact your medical team before your appointment.
Look after yourself
Treatment Free Remission … tki withdrawal symptons.
2010 Imatinib 2year trial.
2012 switched to Nilotinib.
Nov 2021 half dose. 1year
Nov 2022 NO MEDS.
I have read so much information regarding the worldwide decision to trial cessation of medication in long term stable molecular patients.
All the Experts cite pain as a side effect but blur the cause by adding age, previous pain issues, pain thresholds.
None them have addressed physical limitations due to joint and muscle disturbance.
My hands are swollen and knuckles click.
Mid upper arm muscles are unresponsive.
Dressing and hair washing are wearying.
I can’t imagine being able to garden when I haven’t the strength to grip a mug or pen.
Consultant suggested Ibuprofen for ‘inflammation’
Made me queasy so sticking with paracetamol.
There is nothing in the published data to pinpoint how long tki withdrawal symptons will last. 12 weeks, 48 weeks and longer.
My bloods are checked 8 weekly by Addenbrookes.
I have 4 monthly Consultant phone appointments.
I accept that decades of taking oral chemo could damage organs but they need to realise that the musculoskeletal symptoms of cessation are debilitating.
I will drag on until May phone consult.
Be Warned fellow CML patients.
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@Erimar a welcome to our forum you certainly have some really nasty symptoms.
I have to stress this is your experience and we are all individuals with individual experiences.
I am presuming your consultant is up to date with your symptoms, the severity of them and the impact on your daily life.
I am not a medical person but perhaps if your symptoms get worse before your next appointment please do contact them.
Please do let us know how your next appointments and tests go.
Look after and be very kind to yourself
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Thank you for ‘listening’
I am grateful for my very healthy 10 years on Nilotinib.
I know others have not tolerated it so well.
Obviously I am hoping the ‘niggles’ won’t last too long.
If CML’rs don’t report personal experiences we only have the wordy scientific data to wade through.
It has always been a Guinea pig situation and continues to be so.
I expect others will come forward with their concerns as more of us are chosen to Stop Meds.
We are fortunate that the NHS are looking after us.
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I was on imatinib then moved to Nilotinib and have moved to reduced dose 6 months ago. Still stable on my last blood test. I don’t think I will be moved off meds as it has taken me 20 years to get to this level. I am not aware of any side effects that relate to the dose reduction but i have seen webinars talking about the sort of side effects you have which must be difficult to deal with. We expect to feel better coming off medication so it must be such a disappointment . I think the view is that the effects should improve over time but there is obviously no guarantee. Would there be an option to go back to a minimal dose and see what happens?
Sending you best wishes and hope you find something that might help. I have seen magnesium recommended as a supplement for pain as well as turmeric but best to ask your consultant first.
x
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Morning Chrispy
If bloods go haywire Nilotinib resumption will be ‘automatic’
Resting during winter is not a hardship. I will have to pop paracets when garden needs my ‘muscle’
I can cope with niggly pain but doing chores with clumsy hands is wearying. I suppose I am getting exercise bending to pick up dropped things.
I will Post again in May when Consultant will give March 7th pathology/Addenbrookes results.
Thank you for responding … much appreciated 
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Good afternoon just an update on coming off Nilotinib, I am now on week 4 and had my bloods done yesterday & all is good, my Bcr results will be in the next few weeks, I feel all good at the mo, I’m actually feeling no different to what I was when I was on them… I hope it continues like that & doesn’t progress to what a few people have experienced with the side affect… I’m staying hopeful, grateful & so positive and have such a good mind set that this will be the best decision I made to stop taking them …
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