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Hi

Hello all

Am new to this site - although I have had CML since 2006. Have just had my medication changed from 400mg Imatinib daily to 400mg Nilotinib twice daily as the imatinib has stopped working and am finding it hard to adjust - I have been on it 1 week and got past the feeling nauseous but have come out in a dry itchy pimply rash all over my neck and face. Does this get better with time? My consultant says I can take piriton to help with the itching but it doesnt seem to make it any better.

Have always coped well with my diagnosis of CML but am now worrying - as my consultants say there is the possibilty the CML has mutated - I am waiting for the results for some tests which should be back 2/3 weeks time - in all honesty the last appointment passed in a bit of a blur and I didnt really take in what he was saying- and he has referred me to the transplant centres in Sheffield and Nottingham for preliminary discussions for a BMT. I can feel a touch of panic setting in - and just wanted to be in touch with others in the same situation who understand.

Sue

Hi Sue,
regarding the rash- please see discussion thread below about this side effect of nilotinib, there is some good advice from people who are currently treated with this TKI.

As to your mutational status - do not panic just yet. Your doctor has changed you to nilotinb which is effective in the majority of mutations (apart from T315i). There is also the possibility of dasatinib if you do not respond to nilotinib well enough.

It is highly likely that you will respond well to nilotinib so try not to worry too much.
There are two other TKIs currently available bosutinib and ponatinib. They are available through either clinical study or compassionate use...depends where you are treated. Ponatinib is currently in phase 3 clinical trial called EPIC- in US and Europe- and is effective in dealing with (T315i)...but you can still access this TKI- again it depends where you are treated.

You need to ask your doctor for the results of your mutation analysis as well as the % of bcr/abl - then you will have more information about your current level of disease and therefore the available options.

Sandy