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Patient Seminar

Have just come back from Cardiff, really good day, nice to meet friends old & new. Always learn something new, & the future for us with CML, is looking better all the time. 

Just a short note to say many thanks to Sandy and all of the Doctors and nurses at the CML conference in Cardiff today, as a recently diagnosed patient the help and advice was superb. I would recommend to all if you get the chance to attend any future events to do so, for the info gained and also to get the chance to discuss our condition with other patients.

Nigel

Hello Nigel,

 I hope you got home ok. It was nice to meet you at the end of the day. It is also nice to see that you found the day usefull, & hopefully we can meet up at other events, maybe at the Hammersmith meetings next year.

All the best

Bob

Thanks Bob likewise nice to put a face to a name, thanks for making me so welcome. I have had a look for the Hammersmith date in Jan but could only find 2011's, do you have any details as yet ?   ndeekes@onetel.com  

Nigel

Excellent day, very much enjoyed it, and all the talks were very worthwhile attending. Please pass on our thanks to Andy and all the staff at UHW, they must have worked so hard to make all the arrangements, particularly Kate - the Welsh cakes were a wonderful touch ! Diolch yn fawr iawn i chi gyd. See you at the next one. Edward and Theresa Cooper 

I agree that the seminar was good this year with very clear presentations- particularly from Professor Apperley. Professor Steve O'brien's talk about the STIM trials and the similar trial that (we hope) will open here in the UK at some point next year. Steve called it the 'Destiny' trial/study and the rational behind it sounds good in my opinion. I know that he said the UK clinicians were being more cautious than their French and Australian colleagues but if I understand it correctly- maybe more of the patients enrolled will keep CMR status because as they will be kept on a low dose of imatinib (and maybe reducing it even further over time) the residual disease will be controlled in that way. 

I have started writing up a report on the day- although I did not attend all the breakout sessions- particularly the side effects one. 

If anyone took notes or had particular impressions of the day and would like them to include particular points in my report then please send them to me by email. I hope to finish the report by Friday at the latest.

Best wishes,

Sandy

I know I missed meeting up with quite a few of you and the only downside to these kinds of meetings is the lack of time to talk with everyone. But I did manage quick catch ups with some. It was great also to meet up with people new to these kinds of seminars and who were very positive about the experience.

I think this kind of patient day- specific to CML- is unique (certainly in Europe) and I am proud of and thankful to the NHS expert CML clinician's ongoing commitment to their patients. They give up a considerable amount of their free time to make these Seminars so successful.

 

 

I would like to thank Sandy and all the speakers and organisers who gave up their time on Saturday to make the seminar so worthwhile.

regards to all

Chrissie