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Advice needed please!


Hello all


I was diagnosed with CML in Nov 2020 and put on Imatinib 400mg daily straight away. Apart from a little nausea I coped really well with it and was feeling good and somewhat 'normal' on it. My blood levels responded very well and were all at a normal level 2-3 months in, then it all changed. My 3 month blood review showed a reading of 31% ( sorry not sure of the correct terminology for the test!) so my haematologist decided to stop the Imatinib and put me on Dasitinib instead 100mg daily to reduce the level quicker. I had an ECG and chest x-ray done, again, all normal.

On the first day of taking it I had an horrendous headache ( like a migraine) which I couldn't shift and then 2 days in my face became swollen (eyelids and nose) and I had a very red, hot and sore rash all over my face, it looked like I had sat out in the sun too long with sunglasses on!

Rang haematology and they said to stop taking it, take antihistamines instead and they would see me in 2 days time. Reaction subsided with the antihistamines and I was then put on Nilotinib 800mg daily approx. 2 weeks after finishing Dasatinib.

Unfortunately, I have had the same reaction to this TKI too only more severe. I stopped taking straight away and again was advised to take antihistamines and atm am waiting for a call back from the department to see what happens now. I am a fit person who exercises daily, I drink gallons of water and try to look after myself well but this has completely thrown me now and I am reluctant to try anything else for fear of the reactions happening time after time.

Is this normal? Has anyone else experienced this at all? am I being paranoid? I felt so well on Imatinib and now feel so deflated, andy advise and words of wisdom would be very much appreciated!

Thanks J

Could you ask them to start on a smaller dose like 50 mg that might help with the intensity of side effects.I don't know much but from what I have read headaches are a common side effect and usually subsides in time.

Hello Janet

Sorry to hear you are having all these problems with the TKI’s. Everyone seems to have different results and side effects with these drugs. I would think in the first instance you need to talk, at length, with your haematologist. 

Not sure where you live, but here in Oxfordshire I have an Advanced Nurse Practitioner who I can telephone any time - it usually takes a day or two to get a response, but she is a specialist in CML. If you have one of these, I should contact her/him immediately, especially if you are unable to get hold of your haematologist.

Failing the above, it might be worth your while researching a CML specialist haematologist near to you and getting in contact with him/her as soon as you can. You clearly need some specialist attention.

Other ports of call: - I have used Macmillan on an occasion, they may be able to point you in the the right direction as far as specialists are concerned.

Lastly I should pester until you get to see a specialist. You should not feel alone and ignored at any time.

Do use this forum as much as you need to. I was diagnosed roughly at the same time as you. People here are very helpful, knowledgeable and encouraging.

Incidentally, 800mg of Nilotinib twice daily sounds like a massive dose. Was that a typo?




Thanks David for your kind reply.


Nilotinib was 800mg per day taken in 2 doses 12 hours apart with the usual fasting regimes applied, sorry I put that bit in wrongly! It seems that I am sensitive to something in both drugs which is worrying me but Im seeing my haematologist in 2 days time and she has already been discussing my case with a CML specialist so will see what happens next.


In the mean time I will as you have suggested do my research and see if I can find some answers!!!!


Thanks Again J

Thanks An for your reply, its certainly worth asking when I go to clinic in 2 days time




Your story brings back bad memories.  I was Dx 9/2016 and started on 600 MG nilotinib daily (300 mg 2x/day 12 hours apart). Had a myriad of bad side effects including 50+ squamous cell skin cancers, swollen salivary glands caused by severe dry mouth, irregular heart beat, fatigue, GI distress, etc, etc.  I worked with my doc to reduce dose by 150 mg/day 3 times over a 6 month period until I hit 150 mg/day 1x/day.  All side effects resolved except irregular heart beat and I reach MR >4.5 in less than 12 months. I took a beta blocker for the irregular heartbeat and that helped, but it still bothered me, so I tried TFR (quitting completely) and that failed so I went back on nilotinib 150 mg/day and quickly reached MR >4.5 again. Then I developed neuropathy and my oncologist and I decided to switch to 20 mg dasatinib 1x/day which I have been on for 6 weeks now.  I have a intermittent cough and mild shortness of breath, but Chest X-ray and echocardiogram yesterday were all clear.

Bottom line: it's a process for most of us. Goal is to find the lowest dose that still controls the CML.  If you're like many of us, that can be much lower than the doses you are on now.  My doc would not permit dose reductions until I hit MMR (i reached this in 82 days), so if your latest PCR is MMR or better, there is no reason why you shouldn't be able to go to no higher than 450 mg/day nilotinib or 50 mg/day dasatinib.

The body also takes time to adjust to any TKI, so patience id also important.  Some of the side effects you are experiencing early on may very well subside or even disappear over the course of the first 6monthsor so of treatment.

Advocate for yourself and good luck

If you haven't already read the book, "The Philadelphia Chromosome" by Jessica Wapner, it's well worth a read. Lots of good background to CML and discovery of treatments.


Thanks for your reply, it really sounds like you had an horrendous time! Im back at clinic this afternoon to see what they say, staying positive for a more productive outcome!

Hello Janet 

Sorry to hear you’ve had so many problems with the meds so far!  I went through similar problems and changes of meds until I was settled on Nilonotib.  Initially I was given 2 x 300 daily but that was causing problems with my pancreas.  I’m now on 300 once daily, still having some problems with side effects but managing to tolerate them for most of the time.  
it may be worth asking about adjusting dosage  levels so the side effects are more tolerable for you!

Fingers crossed for you! 🤞


They have no justifiable reason to start you on that strong a dosage. Nilotinib 800mg is very high, even if you have a high sokal score. Ask them to lower the dosage. 


Good luck