Could I ask for some advice please? My husband is thinking of asking another consultant for advice on living with the side effects of Glivec. Having been PCRU for 3 years it is obviously working and he does not want to change TKI. I have read on this site about CML Centres of Excellence and am wondering if he could seek help from one of these? We live in the North of England. Who could we see and how would we arrange it? Many thanks.
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Hi... side effects are a serious issue if they affect your quality of life and even if you are a good responder you should not just 'put up with' side effects and soldier on.
During the Glasgow Seminar this issue came up- good response to imatinib but very troublesome side effects. I think there were several people there in the same situation as your husband-and the advice from the clinicians who were presenting was something like this "doctors need to know about how you are coping with side effects if they are to give you the best possible care" ... ie. you can and should switch to a 2G TKI if imatinib side effects adversely affect your QOL.
Of course, there are some clinicians who might not feel this way, and if your husband would prefer to change his treatment centre then he could consider the following.... depending on where you are in the North.
There are centres in Liverpool, Leeds, Manchester, Newcastle amongst others, so let me know which City you are most near to and I will send you the contact details.
Sandy
Dear Lydia,
I will contact you with the contact details of Liverpool and Leeds. I think the lead haematologists at any of the centres mentioned would be sympathetic- Liverpool is a very good centre and of course as my family lives there I have a soft spot for the city- but I am sure others on this forum who are treated at one of the above mentioned centres might have some input/advice.
meanwhile I will send you the details.
Sandy