As some of you already know, this years UK CML Patient Education Day will be on November 14th at Hammersmith Hospital Du Cane Road, West London. If you have suggestions for topics that you would like to see covered on the day then please reply here and I will pass them on to Prof. Apperley who will be hosting the Day with other CML clinicians. As always they are very keen to cover subjects that are important to to us- patients and their families who live with CML and its treatment on a day to day basis. Thanks for any input you may have which will make this important day as successful as it has consistently been for the last decade. Sandy
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UK Patient/Carer Education Day
Categories:
Off the top of my head:
Clinician's view of NICE/CDF review of TKIs
Current view on long term prognosis
New developments - i.e. any new TKIs, T-Cell trials etc.
TKIs long term effects on health
C
Top of my head...
Long term or irreversible effects of prolonged TKI use. Seems to be an increaseing confusion each time I ask the question, although I am finding some people slowing down young, cracking joints etc.
Break out sessions, perhaps on concerns related to each attendee. Therefore if you have concerns about side effects, pregnancy, Hematologist's inter-operability with GP's and other fields then maybe you could speak to CML'ers over a coffee by submitting an interest on registration and then areas to chat at some point throughout the day. I attended last years with my wife and felt it was a missed opportunity for so many people with such a rare disease to sit together and not engage with each other. I imagine it is awkward for some people to introduce themselves with "I have CML, have you?" amongst carers, siblings and professionals during coffee breaks.
I am not sure I would attend again if I am honest if it was the same topics as last year. Obviously survival is paramount, therefore sessions on new data is a must, however if we are taking these pills for the rest of our lives and carrying residual CML what can we expect with regard to other health issues? I'm 35 and fear about the quality of the future over the length.
Maybe monitoring other issues and supplement use for peaks and troughs in blood work. Key side effects and red flags to investigate deficiency?
Obviously we are all different and I respect entirely that other people may have issues that are far more important to them, I just want to state what I would like to see.
Thanks Sandy.
John.