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Hi

i have recently been diagnosed and have been on 300mg twice a day of Nilotinib for 4 weeks now. I would like to know if anyone else has side effects. Mine are pretty bad they include

nausea to the point I can’t eat, fatigue where I just sleep all the time, aching in the back of my neck that gives me headaches, a pulsing feeling in my head, hot and cold constantly, blurry vision. I was worried the CML was causing these symptoms but it’s only been since I started the meds except for the blurry vision and head pulsing. I am coping with them and my Dr says it should all settle down as my body gets used to the tablets. I don’t want to reduce my dose as it is working quickly and bringing my levels down from 100,000 to 29,000 in 2 weeks and getting better!!!! Any help would be very appreciated as I am very scared and just not sure anymore.

Thanks

I had some of these problems, in particular the gut problems and the fatigue.  The fatigue hit me hard the very first day I took it, and persisted for most of the two months that I was on it.  The pharmacist recommended activity to combat the fatigue and it did seem to help.  For the gut problems I often did not eat much and kept my dietary choices simple.  I also had the head pulsing.  I never did find anything to help that.

Hi there,

I’ve been on Nilotinib for 20 months. I’ve had all those symptoms except for the sickness. The neck and shoulder blade aches/pains were terrible in the first 3 - 6 months. The only thing that relieved it was a hot bath every night with DR Salts bath salts. I to this day continue to have this routine. I have no symptoms now except for the blurry vision (not very often and tends to be 1 eye), sometimes they also weep in the night now and again and I have very mild folliculitis on upper arms and legs which isn’t itchy. I would say I am 98% symptom free. Some will come and go and there seems to be no reason or rhyme. The one that freaked me out the most was numb finger tips on my right hand for about a month. That too went and never returned.

The key take home is give your body a chance to adjust to its new normal everything will settle down.

It is a scary time in the early days but you’ll soon see this is nothing more than a chronic illness, the main thing is you’re responding well. Just keep taking your meds as prescribed.

Maybe you could change the times you take your meds so it doesn’t cause sickness. I am sure this will pass.

Alex

Hey

it is so good to know the symptoms are normal. I started today with a time change instead of taking them one hour before I eat I took it 2 hrs after and found I could eat tea this way. The neck pain is probably the worst thing at the moment but am managing it with paracetamol. I am starting to slowly learn that it is a chronic illness and talking with people who have the same thing is sooo helpful. Hope you are all doing well!!

 

Hello Janita

When I was initially given Nilonotib my side effects were similar.  I discovered by accident that if I ate first thing, waited a minimum of 3 hours before taking meds and then waited at least 2 hours before eating the sickness/diarrhoea was very minimal and really helped to settle the major stomach issues I was having.  I do only drink water in the 3 hours prior to taking meds and have coffee but no food 1 hours after ( eat after 2 ). I was initially setting my alarm early in the morning to take meds then eating 1 to 1 1/2 hours after, that for me was causing so much stomach problems I was very reluctant to go out just in case I needed the toilet.

I now only eat a small meal in the morning but do include a high protein powder drink (mixed with water) so that I know there is a good source of nutrition to the start of the day.

3 hours after eating and 2 hours after meds appears to work for me so may be worth trying.

I really hope you find a plan that works!!!!🤞

Yeah defo! When you start this journey it’s very scary because the symptom list is as long as your arm and actually the meds were more scary than the CML in the early days for me. Give it time and I am sure you’ll be like me, doing absolutely fine. The physical symptoms can be tough but also make sure you take care to watch you mental and emotional states. If you let it this thing can consume you, even if you are doing well. If you ever want to message me on here you can so you don’t feel so alone. Having Nilotinib experience I can help.

Take care

Alex

Hey Alex

thank you so much. I guess my biggest fear at the moment is my levels will go too low and I will have to stop the meds. I have another blood test on 6th Jan so I’m hoping for good news and yes you are right CML can consume your life which I’m trying not to let it. I’m not sure how to message you yet working on that one lol. I’m finding just picking throughout the day and eating when I am hungry is helping with the sickness instead of 3 meals a day. The stiffness and soreness in my neck is pretty hard to deal with but I’m getting there. Hope you are well!

Janita

Hey Janita,

No problem. I was sooooo scared in the early days. My blood levels have always been great since being on Nilotinib but everyone’s bodies acts differently. I am sure yours will stabilise once your body is accustomed to it. To message directing in the menu bar click the little icon of the person head then type in the name of the person you want to message in my case you’d type alexmcpee.

Having someone who can answer questions from experience is invaluable to us. I’ve got a very nice man I speak to regularly and he’s always there when I need him. I am happy to do the same for someone else.

Yeah my neck pain was awful for a while, but it’s never returned after having it for 6 months on and off, it felt like I twisted my neck or a really bad pinched nerve. I tried everything but as I said the only relief was a hot bath with bath salts and tiger balm helped a lot.

Hang in there!

Alex

Hey Alex

i guess it’s hard to think as well I’ve only been on these meds for 4 weeks ( seems like a lifetime) and need to give my body time to adjust. I’m such a family person and am struggling with not being able to do things with my family I feel bad needing to rest but I’m learning I need to otherwise I’m exhausted. My husband is great but I know this is hard for him I’ve gone from a bubbly happy woman to a complete bitch at times lol it’s nice to know I have someone who is on the same meds as me and all this is “normal” thanks for taking time to talk. 

Janita 👍

It's good that you are giving some time to getting used to the med, but keep in mind that, IF things don't get better, bad side effects are a legitimate reason to try a different TKI.  In my case, I never could get used to Gleevec (very similar to Tasigna) - I tried for two years.  It's possible that a dose reduction might have made it tolerable, but they didn't do that in those days.  Anyway, switching to Sprycel really helped a LOT.  I never had another bout of nausea, for instance.  Depression lifted, puffy eyes got tons better, skin was no longer cadaver color.  I don't know about your neck pain, but it could very well be that you are a "Sprycel person" and not a "Gleevec person" in terms of side effects.  They both work on the CML, as we know.  But sometimes side effects are insurmountable.  Only you can know.

Hey

all I know at the moment is the side effects are ruling my life!!!! I can’t plan things with my family as I never know how I’m going to feel from one day to the next. Is it normal to not want to eat anything even if I’m not nauseated I just don’t have an appetite. I’m scared to tell my Dr about the side effects incase she drops my dose or changes me as this drug is working. I’m really confused and scared.

Janita

Janita - Something I wish someone had said to me all those years ago when I was suffering like you:  "You don't have to feel this bad!" But, strangely, not a single doctor (onc, pc, nurse-practitioners) said that.  Instead, I got:  "Most people tolerate the drug very well."  Fast forward to now:  The entire CML community is finally on the same page regarding a long list of very real side effects, some of which are to a degree intense enough to generate extreme misery.  I can remember - truly - feeling I couldn't go on.  I know exactly what you mean about the nausea, about not being able to plan family things or say yes to anything because you might be so sick and fatigued when the date comes around, the lack of appetite - real and metaphoric.  Don't be scared to speak up!  You deserve to feel better!  The oncs are the ones who know about the reasons for the side effects, but they're completely clueless about doing anything.  The PC's know how to treat sick symptoms, but they don't understand CML and TKI's.  Even all these years into it, there is this disconnect.  Ask to change TKI's.  Remember, Gleevec and Tasigna are very close relatives; Sprycel works in a different manner (with a little overlap).  You may feel much, much better with a drug switch, and, as I said before - they all work on the CML.  Barring a switch, you have got to get this guy to lower your dose, at least for awhile, to see if your side effects become tolerable or disappear.