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Again, severe reaction on Nilotinib.

Hi,

I have been off Nilotinib for 3 weeks today following severe skin reaction. I have been supported with Steroids during this time, both IV & tablets.  Over the last 14 days all had settled down & I have gradually been reducing the dose of steroids in small increments. Dose today was nothing. I restarted Nilotinib last Thursday but only I'm once daily. The aim was to gradually increase the dose up to 300mg BD. BUT yesterday I had a small patch of very red itchy skin. As the  day has gone on the rash has become much bigger, red, very itchy & my face has started to swell again. I am so disappointed, I was hoping Id be okay.

My question is, where can I go from here? I reacted badly to Glivec, then I have had 18 months on Nilotinib & now this. There is Disatinib, but my consultant was worried about pleural effusion. Is it looking like I may have to go for a transplant?

I am very worried, any advice would be most welcome. thanks

Ali.

Hi Ali-

No advise I'm afraid, but just wanted to say that I'm thinking of you, and that as stated on this site many times, if it's your fate to get CML then now is the best time as there is so much being done. This forum and others are peppered with stories of people who have undergone BMT's and gone on to live healthy and full lives...

I hope that you are able to talk with your consultant and that they can reassure you of where you are headed, and that in turn this gives you something to work towards and fight for.

All best wishes-

ADJL

Dear Ali.... I am sorry to hear the rash has come back. However it might be that you could control it with a small amount of steroids for a short time? or is that not possible? 

I would not start thinking about transplant just yet. You could probably do better to ask for a second opinion at the Hammersmith. Would that be a possibility? Dasatinib does have pleural effusion as a side effect but I am not sure how common that is. Why is your doctor so worried about that in your case? I would certainly want to try dasatinib if I were in your position. 

Sandy

Yes Dasatinib  can give you pleural effusion, one in ten chance,but the possible  gains over a transplant are massive,with monitoring the risks to health are quite low.That said its worth having siblings tissue typed as a plan B.

Hi Sandy & all & thanks for your posts.

Sandy, The Dr at the hospital is reluctant to put me back on steroids as I have had so much over the last few week. I saw my consultant yesterday & he is going to contact Prof Craddock in Birmingham to see what he suggests. We discussed Dasatinib and I think he is worried with the edema I had with Glivec & the swollen face that I've been having now with these adverse reactions to Nilotinib. We discussed going back on Glivec, but I am not happy about that. Also slow dose interferon , I cant remember the correct name but that doesn't sound very nice either.

I am feeling very stressed with the uncertainty & off treatment for 4 plus weeks now. The consultant is worried that I am going to get these severe reactions with all the TKI's. I am back in clinic next week. Also he is going to try to get Nilotinib 100mg from the drug company for compassionate reasons as they are only normally used in a trail situation. I was only on 200mm once daily for 2 days before the rash started again so I wonder if 100mg will do the same. 

Ant thoughts would be gratefully received.

Thanks

Ali

Dear Ali.... if your pcr is very low then low dose IFn would be something to consider. I know there is a trial in Germany that has effectively kept low pcr status stable with low dose IFN... once every two weeks. I know someone who is taking this and he says the only side effect he has is feeling quite grumpy and low for a couple of days after the injection. Otherwise he is fine and his CML is controlled without TKI's.

Dr Craddock is a great CML doctor so you should get the best advice as what you can do next... I am sure you could at least try dasatinib. As Michael says ... not everyone suffers the pleural effusion effect.

 

try not to worry too much,

Sandy