Hi.
I was diagnosed with CML few months ago and have been taking imatinib 400mg once a day.
Since I have experienced some unusual things, I was hoping maybe someone could help to see if those might be side effects.
I have been taking Imatinib since late July 2022, everything was fine in the beginning, I had some nausea but mild and rarely. After a month or so, I noticed swelling under my eyes. Some days it would be worse than others.
The latest thing that is happening is swelling of my lips. It looks and feels the worst in the morning and calms down throughout the day.
I have also noticed in last few weeks my lower lip is chapped, it pealed and it is still not completely healed.
Also the inside of my mouth ( inside of my cheeks and around my teeth ) has some redness as if I hurt myself while brushing teeth or smth. My dentist advised me to change my toothpaste, so I will try it to see if anything changes.
I don’t know what to think of it all, so every experience of Imatinib would be very useful.
I am worried about my lips swelling, so if anyone had something similar happen to them, please share your experience.
Hi @rina a great big welcome, I think most of us have dilemmas about whether symptoms we have are due to our blood cancer, treatment or something completely unconnected.
What I would say is to write down all your symptoms and their severity and impact on your life.
Your medical team need to know what you are experiencing in case they can assist.
I await any others with experiences of Imatinib and it’s side effects in case they can help and I will copy your post to the Blood Cancer UK nurse advisors @BloodCancerUK_Nurses
Please let us know how you get on and look after yourself and be kind to yourself
I hope we could help each other with individual experiences. I am always telling myself everything is fine and will continue to be so and my doctor reassured me that people with CML live as long as any other healthy human as long as we do our check-ups and take the drug.
He also mentioned the possibility of going off the drug after two year period of remission. I am sorry if my spelling is off, English is not my first language.
In the first few months of taking Imatinib, I took it in the afternoon-evening but now switched to morning-noon because I thought maybe it would reduce my under eye swelling. I have been taking it morning-noon now for the last month and my under eye swelling is a little less visible. Maybe it has something to do with it and maybe it doesn’t but it is worth a try for anyone who has similar experience.
What I have also noticed is I get slightly nauseas if I take Imatinib immidiately after a meal or if I eat in the first hour after taking it.
So the best way, for me anyway, is to eat one hour prior taking the drug and than waiting at least an hour before eating or drinking anything else besides water. It has helped with nausea.
If anyone has experienced lips swelling or ulcers, please share it
Hi @rina . I took immatinib for a few years before moving to Nilotinib but i didn’t have the side effects you describe so i can’t really help with that but i would suggest talking to your consultant about them. In the early days side effects can be a worry and some do fade. I think i was told to take it with food but it was some time ago so I may be wrong. Have you checked the instructions with the tablets as to the recommendation? I think it should also include side effects you should be worried about and those that are normal. I just had foot cramps, tummy upsets and occasional red eyes.
Good luck and hopefully you can make contact with your consultant or nurse to give you peace of mind. x
I have told that to my hematologist but his response was it isn’t a big deal and he would not give me any additional treatment because there are people who have much worse side effects. I haven’t told him about my lips swelling but will do so at my next check up in a month.
BCR ABL scores were low but not at the most optimal level. Nilotinib is a stronger drug and my levels are now at 0.008 so i have reduced my dose. It was not related to side effects.
I have CML and am on Imatinib. It has worked well for me. I am very glad to have it.
I do have some eye sensitivity and cannot use mascara etc and get very red eyes it’s even a drop of dilute shampoo in them. It fades after 4 hours or do. I also find plasters produce a sort of prickly rash. Generally I tolerate it well but get mild nausea and so have it part way through breakfast which helps a lot. One particular brand does upset me and so the hospital avoids that one for me. Apparently it is the tablet coating and not the actual Imatinib which does this.
I hope this helps you.
I have been thinking about you a bit more this morning and have a touch more advice.
When I was first given Imatinib there was a pharmacist in charge of the chemo patients. He sat me down and had about a 15 mins chat about them.
One of the things he said was that on the packet you will see it says cytotoxic do not handle this medication. This means that the Imatinib is poisonous to skin and so to minimise your skin contact with it. He told me to open the foil over the tablet with a finger nail or knife tip. Have a tumbler full of water ready. Then tip your head back and drop the tablet down your throat and follow it with drinking the tumbler of water.
Never crunch on it with your teeth you will break the tablet’s protective coating which is there to keep your throat safe. Always remember this is a powerful drug and that is why it is only dispensed in a hospital pharmacy. Be prompt to inform your consultant if you have any unusual symptoms.
The other thing which I found was that a yogurt a the end of breakfast does seem to coat my stomach and prevent nausea. I was also told not to skimp at breakfast but have a ‘substantial breakfast’.
This has all become normal to me and it took a bit of time to drag it all out of my memory.
He is a great guy and is always there at the hospital to support chemo patients. One day I saw him sitting down with an elderly lady and her husband to offer them advice on her first chemo. The other pharmacists defer to him and his expertise.
I hope this all helps you.
I’ve been on Imatinb for 10 years so far and have ticked off most of the side effects at some point over that time. I started at 200mg/day and been down as low as 100mg 3 times a week. Currently on 100mg daily.
In no particular order:
Wave of nausea between 20mins and an hour after taking it (I take mine in the morning) - whether I have something to eat /drink doesn’t really make a difference.
Skin damages easily: especially around the eyes and shins.
Sunburn: really susceptible to sun- so hat and factor 50+ when the suns out (I tan really easy!)
Random itchy spots: these pop up occasionally and almost anywhere.
Vision changes: I’ve had some weird vision changes (prescription changes) which have been attributed to being on Imatinb
Loss of swallowing reflex: odd one this, much worse on early versions of generic imatinb - doesn’t happen with gleevec or latest version of generic.
Fatigue: comes and goes- creeps up on me when not expecting it - goes away for no particular reason.
Bloody eyes: random bloodshot eyes (happened more on higher dose)
I’ve got CEL (Chronic Eosinophilic Leukaemia) so on Imatinb for life. I’ve got used to Imatinb now and the side effects. None are really debilitating- and Imatinb, of course, keeps me alive - so I just accept the weirdness and randomness of the side effects as part of my new normal😀
thank you so much for sharing your experience.
Maybe this is why my tongue feels like I’ve burnt it for the last few days…maybe I did burn it on coffee without realising, I don’t even know anymore.
I will try to rush swollowing it to see if it gets better.
Did you maybe find anything that would lessen or prevent these side effects?
I also have nausea 20-60min after taking the drug. Sometimes it appears and sometimes it doesn’t. I thought I had a way to avoid it, as I described earlier but yesterday, I got it anyway.
Thank God it comes like a flash, lasts 10-20min and goes away. I hope this won’t get worse.
Could you describe those vision changes? I am wearing contact lenses or glasses since I was a child and have pretty poor vision without them - can’t see far without glasses.
This morning I am feeling pretty dizzy, like a slight shadow in front of my eyes also, but I get this on PMS days, so also not sure if it is that or the drug.
Sometimes I think maybe the drug increases those sensations that I experienced before - like occasional vertigo, fatigue as you also mentioned and so on.
If I understood you correctly, most of your side effects disappeared over time? Do you maybe recall how long it took for them to start going down?
I am so hopeful my under eye bags will go away at some point, it is very frustrating when my colleagues ask me if i was out partying the night before and as a woman of 39, it gets discouraging when I look myself in the mirror
I know I should be very happy my diagnosis isn’t as bad as it could be, but it is a constant reminder when you see how it affects some things that are noticeable to others.
May God give us all the strenght and the wisdom to find the best way possible to cope with this state.
Thank you all soooooo much, you are such an amazing and inspiring community
I’ve not really found anything which lessens the side effects if I’m honest - I’ve more learned to live with them - part of my new normal.
As far as my eyesight goes, I’ve had to have a number of changes in my prescription that the optometrist says she wouldn’t have expected (all correctable with specs).
I forgot to had that I do get brain fog somewhat regularly which (as you describe) feels like a veil over your eyes - or like your wearing a dirty pair of glasses - often accompanying the fatigue.
Dear rina
Just a quick message to wish you a Happy Christmas. Hopefully lots of fun and things to distract you. Just remember to take your lovely Imatinib and enjoy your ‘substantial breakfasts’.
Grandma Jo
