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Nilotinib symptoms - missing a dose

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Hi,

My husband has been diagnosed with CML.

He currently takes Nilotinib 300mg x2 a day.

He recently missed his morning dose and just took his evening dose due to time lapse. Later that day he became extremely fatigued and has since had pain in his chest, breathlessness more frequent rashes and a general unwell and spaced out feeling.

I was wondering if anyone else has experienced these types of symptoms following missing a dose or do they seem to be just coincidental?

He has been on Nilotinib since Jan 16 and we are coming up to the 3 month review. Up to now his symptoms have been quite mild, just general nausea first thing in the morning and sore eyes at night (mainly due to tiredness) but the last day seems different.

Any advice would be greatly appreciated

Many thanks

Hi Emma,

It sounds purely coincidental to me. Was it the first time he missed a dose? If so, he might have found that quite stressful in itself which could have lead to him feeling a bit off-colour.

I hope your husband is doing well. You'll find this forum a great resource for finding things out about CML and all that goes with it. People here are really experienced with CML so will be able to help you find answers to most things.

I hope your husband is doing well and responding to treatment very well. Where is he being treated, if you don't mind me asking?

David.

Hi.... it is very likely -  as David has already said - that it is coincidental that your husband felt these symptoms when he had missed a dose. What is worrying is that he had chest pain and breathlessness which may be linked to nilotinib. I would advise that he contact his treating clinician if these symptoms persist over the next few days. In some people nilotinib can cause adverse cardiac effects, so it is best to be pro-active and contact his hospital for advice.... as I say if his symptoms persist or get any worse. It may well be that his breathlessness, fatigue and chest pain are because of his being overly anxious, but you did mention that he has a rash too so all in all these symptoms do point to the side effect profile of nilotinib. 

If this proves to be the case then his clinician may well change his treatment to one of the other TKIs available as 2nd line therapy. Please update us here when you have more news.

best wishes,

Sandy