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Nilotinib side effects

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I have to start nilonotib 300mg twice daily next week and reading through some of the possible side effects I’m now getting rather worried.  What is the best way forward to minimise some of the negative impacts it has on your system?  

Hi Mick I’ve been on Nilotinib for 4 years, I’m on 400mg twice daily as for the side effects everyone’s different, I’m not suggesting you won’t get them but I work in a physically demanding job,on regular nights and at 62 still feel great, give them a chance and see. Peter 

Thanks for the reply Peter 

I’ve not had much luck with side effects so far, probably over concerned.

Good to hear you are doing well!!

Regards

Mick

Hi Mick,

Mainly just hope they don't affect you! There are many potential side effects, but of course not everyone gets them. It's also worth remembering that people who are doing absolutely fine and have little to no issues don't tend to post on internet forums telling everyone that - they're just getting on with things. So don't get overly concerned about the kinds of posts you see online more than necessary.

All the same, you might end up with some problems associated with nilotinib. I don't think you can really do much to prevent them besides eating well and being in good general shape - it's more about recognising them and reacting to them. Some people get rashes so find a good emollient cream useful. Others get muscle cramps and find magnesium is beneficial, along with heat and massage.

David.

Hi there,

I have been on Nilotinib for 18 months now.

In the beginning I had sore scalp (this disappeared after a week).

Slightly red eyes (this has mostly gone).

I have had muscular skeletal aches and pains but very negligible from time to time, mainly in my shoulder blades and neck region, wrist and lower arms. I have constant folliculitis it's not itchy but raised bumps/rash at the base of the hair follicle mainly on upper arms and legs and slightly on chest. You can get cream to tackle it and it works but all the time you are on this drug you will have it and I am not sure you should keep using prescribed cream over and over. I just leave that to it.

Blurry vision from time to time (Once every few months). I do also get drier eyes, sometimes in the night they water too.

I have had some numbness in my finger tips on right hand that lasted for about a month then buggered off.

A lot of passing wind. A lot of CML'ers can attest to this :-)

I have had lately a lot of tiredness and fatigue (last 8 months or so) but I believe this is a bout of depression setting in rather than the pills. Difficult to know really if that is pills. I am inclined to say depression.

If I can think of more I will update this post. I am coming up to my 18month PCR test and so far all blood counts have been perfect and PCR declining. Hoping to make MMR on this test, but that will happen when it happens.

If you let it this thing will consume you. I have been guilty of this of late but I know I will get back on top. Nothing lasts forever.

All the best

Alex

Hi Mick, just to clarify my point on the side effects of Nilotinib, I started on imatanib, which failed to have any success, i was then put on Nilotinib which has controlled my condition, I personally believe the positives far outweighs the negatives, I forgot to mention in my earlier comment I also go to the gym regular, we haven’t to let this condition rule are life.

Thanks David

I agree it’s hard to get a true picture relying on research papers and NHS guidelines.  Still getting over the affects of Dasatinib and reading the information on the tinterweb your head assumes the same problems will occur.

regards

Mick

Peter, do you have any problems with recovery after doing gym training?

I have always been very active until I was started on Imatinib but due to a lot of knee pain and very slow recovery it’s an effort to get much done.  Both Imatinib and especially Dasatinib have had severe impact on cardio respiratory function due to an undiagnosed underlying condition and I’m hoping this will not happen on Nilotinib
 

Regards 

Mick

 

Hello Alex 

what was the cause of the numbness in your hand?

wind! Lol  from what I have read elsewhere this may be caused by a change in gut bacteria, the root of many problems!

Depression can have major physical complications also, it’s not all in your head as some folks wrongly believe!  I had a really bad spell whilst on Imatinib, don’t want a repeat of that situation!!  The only relief I got from it was to get out on the pushbike and didn’t stop moving until my head was right.  Hope you find a way to get round it!!!🤞

regards

Mick

 

Alex - I definitely got depression with imatinib.  Definitely.  Nilotinib is chemically very similar to imatinib.  I forget whether or not Sprycel is an option for you, but the depression was vastly improved with a switch from imatinib.  For me. Maybe try it?

Well the numbness was defo the tablets as id never had anything like this before. It was mainly in the fingertips and it went and didn’t come back. The first month on Tasigna I had sharp stabbing pains in my forearm that came and went for a while then stopped all of a sudden. Tabs clearly play havoc and cause all kinds of strange things. I believe my said mental state is more situational how can any of us get a diagnosis of a lifelong Cancer and not get depressed at some point. Hope it’s not the tabs as I’ll be on them for life if all goes well. I am prone to anxiety also so that constant state isn’t good. I am taking steps and seeking professional help to get on top again. Once I hopefully reach MMR then I will relax a bit more. I’ll do all I can to come out on top. One life I am not going to take it lying down!

Also have hair thining mostly of the pubic variety good bye leg hair 🤣

Hopefully you will reach MMR very soon and get the dosage lowered to see if you can maintain the level and reduce the negative effects! 
 

Hi Mick, my gym routine isn’t the same as it was prior to my diagnosis 5 years ago, but nothing else is the same, I put nearly 2 stone on in weight in the first 3 years, I decided to address my situation and get as much normality back into my life as possible and if I can’t “reach” the heights I did before at least I tried, I got a stone off and I’m more sociable than I was at the start, and I put this down to people like David, John and Skubba who have answered a lot of questions on Cml Support that I was worried about in Cml. Ps I now walk on the treadmill instead of running, and the same with every other excercise I do, just do things lightly, and enjoy. Peter 

Hi Mick,
I hope you started nitolinib and you are tolerating well!I agree with David that what you can do is eat & sleep well, stay in good shape and mood as much as possible.I am on nilotinib 600mg daily for a year now and overall I'm doing ok with side effects.In the first months I had a lot of hair loss, muscle pains and itchiness.Also my sugar blood level is a bit higher than what it used to be but still within normal range.What I personally do is to take some vitamin D and eat lots of fruits.
Let us know how you are doing!
Best,
Vicky

Hello Vicky, thanks for the reply!

pleased to hear you are coping well with the side effects! 

I start meds on Monday as they were out of stock in the chemist.

Did your initial side effects improve or have they stayed the same?

Do you have to take any other meds to counteract the blood sugar or increased cholesterol? 
 

Regards 

Mick

Hi Mick!
Yes they definitely improved!The only side effect that I have at the moment is a bit of hair loss.About blood sugar,no I'm not taking any meds but I'm checking the level every 3 months.Hope I've been of some help and I wish you a good start with your medication!
Best,
Vicky

Vicky it’s definitely helpful to hear you and others are coping well with the side effects.  😁

Hi all,

I've been reading all your posts, since I'm on Nilotinib too.

Many familiar statements cheeky

But one particular sticks out for me: what's the deal with the red eyes? My eyes are definitely more red after I started Nilotinib (almost 5 months now), and they have their ups and downs, but they are also a bit dry, especially during the night.

For whomever had the same issue: Did this subside? It's quite annoying, since my work is 8 hours in front of a computer screen, and I am constantly trying to avoid dry eyes with eye drops.

Regards,

Koralia

I had dry eyes while on nilotinib.  An ophthalmologist recommended artificial tears, which you can buy at any drugstore.  It helped quite a bit.

MicK;

Joining this thread a bit late - sorry.  I have been on nilotinib for a bit over 3 years now.  Started on 300 mg/day 2x/day and it beat the bejeezus out of me.  I had many of the typical side effects - fatigue, scalp sore and itching, some nausea - and I had some unusual ones - dozens of squamous cell skin cancers, bad heart arrhythmia, terrible dry mouth causing swollen salivary glands followed by intense mouth sores.  Fortunately the medicine worked well and fast so I worked with my onc to reduce dose from 600 - 450 - 300 - 150 mg/day over a 6 month period and most of these side effects went away or became much less serious.  Even on 150, I still have occasional heart flutters (benign) for which I take a beta blocker which helps, some insomnia, mild occasional neuropothy and very mild occasional dry mouth.

So, if you can reduce dose, pursue that aggressively provided you are at MMR or better (I have been MR4.5 or better for 2 1/2 years.  Other than that, exercise regularly and hard, eat a healthy and balance diet, supplement with D3 at least and do anything else to keep your immune system as strong as possible.

Best of luck

I can also really recommend Carmellose Sodium drops. They are ever slo slightly viscous, so stay in your eyes better than something very watery and really lubricate your eyes. 

I bought these ones, because I felt single-use ones were a bit more hygenic to carry around with you, but you can buy a normal drop-bottle too.

https://www.butterflies-eyecare.co.uk/products/lumecare-carmellose-singl...

David.

Thanks for the reply! 
pleased to hear you have managed to get side effects to a tolerable level!!
very useful to know you are still training as exercise has always been my main life therapy.  Struggling to get much done at all at the moment due to side effects from the various meds I’ve had previously.  I’m still trying to figure out the best regime for drug timing and when to eat to minimise the stomach problems.  I’ve started to feel discomfort in what feels like the pancreas area over the last 2 days and concerned about how that can affect nutrient absorption.

regards

Mick

When I was taking nilotinib twice per day, I took it at 0830 and 2030.  I only eat twice a day at around 1200 and 1800, so that was outside the forbidden eating windows, so I was OK there.  Now that I take 1 150 mg capsule per day, I take it at 0800 and don't eat until 1200.

Continuing to exercise hard during those first 6 - 9 months was extremely hard, but I forced myself and actually worked out even harder than I was pre-CML. I am so glad I did now, because at almost 67, you can lose the benefits very quickly and they are hard to get back.

Don't forget the dose reduction plan - what is your current PCR?

I’m not sure what the PCR figure is now as it has risen over the last few months due to inconsistency of treatment.  He mentioned it was at a stage where mutations can occur.

Got to agree always best to try and keep what strength and fitness you have as it gets harder to get it back as you mature! 

thanks for the reply always reassuring when you hear folks can still be active with this condition with the right treatment and a bit of luck! 💪🏻