hi everyone
i am going to the seminar in liverpool on saturday, this is the first one i will have attended, not too sure what to expect really but will look forward to meeting new people!
alison
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seminar 22nd jan
Hi Jackie and Alison and anyone else going to Saturday's conference - hope you are well. This is my first one too. Not sure what to expect - it's going to be good to meet so many people that I have never met before although I feel as though I know many of you through this wonderful website. I'm sure it is going to be a very interesting day and look forward to meeting as many of you as I can. You'll enjoy Liverpool too - it's a wonderful city. See you Saturday, Peter
Hi all,
Meeting up in the coffee break would be great Alison, and anyone else that wants to, my e-mail address is Quelline@aol.com if you want to message me direct.
Jackie
I will be at the Seminar from 9am tomorrow morning and look forward to meeting up with everyone. The organisers have given me a table so I will be clearly visible.... it can also work as a meeting point for all those who want to connect with each other.
I am sure you will find the Seminar of great support.
Sandy
Hi Peter,
unfortunately I missed you.... I had hoped to talk with you but maybe we should have arranged to were red roses ;o) I hope you enjoyed it- I thought it was excellent and well pitched between basic information and the current good news clinical data re: 2nd and 3rd generation TKI's.
I thought the breakout sessions were good- I went to the stem cell transplant one with Dr.Graham Smith which was relevant for me, and then Dr. Marin's wonderfully ironic performance re: clinical trials etc.
I took quite a few notes throughout the day so will try to write them up this coming week and produce a report. I do hope everyone found it a good experience. I am only sorry that I did not get to talk to that many people. I did try and I hope we get some new members as Prof. Clark and Prof. O'brien did encourage delegates to access this site.
Sorry we didn't meet up, but hope you found it all useful.
Sandy
I just wanted to say a very big Thank You to everyone involved in the Liverpool seminar.
This was our first seminar since my husband's unexpected diagnosis in August 2010 after a routine blood test. Although we are beginning to come to terms with CML in our lives, it has been a difficult few months. We found the talks to be really useful in increasing our very patchy knowledge and thought the level of information was pitched just right for us. Chatting to others living with CML was a special part of the day, as were the moments of humour provided by Doctor Marin and also during our breakout session on 'Living with CML'. Support comes in all shapes and sizes, and we certainly experienced it on Saturday.
If you haven't attended a seminar before, do consider going to the next one. I can recommend it!
Julie
I agree totally with everything you said about the Liverpool Seminar and want to thank the CML Team for organising such an excellent and informative day.
I was also diagnosed in late August 2010 after a routine blood test and really struggled initially to come to terms with the diagnosis and it was so useful for my partner and myself to get more information about the condition and the treatments available. It was also really good talking to people and knowing that there is support out there.
Helen
Hello everyone, I've just signed up to this site after getting details about it from the seminar in Liverpool. It was a good day, interesting and strangely comforting. Thanks to everyone who helped to organise it. The only shame is that the timetable was so full there wasn't much time for chatting with other people. What I did notice was that you couldn't tell the difference between carers and patients, everybody looked so well! (Did anybody notice the willy on the fallen angel in the foyer? Not remotely relevant, I know, just wondered.)
Anyway, about me: I was diagnosed in January 2005 after the blood transfusion service phoned and advised me to see my GP. Talk about panic attack, it's a miracle I didn't drop dead from a heart attack on the spot. Between giving blood on the Thursday, white cell count 200, and being dragged under protest into hospital 8 days later, the white cells had doubled to 400. So what a good job I went to give blood or I wouldn't be here now to tell the tale.
Anyway, after a lot of jiggery pokery and a couple of transfusions I went onto Glivec 400mg and have been PCRU (PCR undetected) for about 3 years, or it might be 4, I forget. So what a lucky bunny am I. I am very well and enjoying life. Usual side effects but it beat being dead hands down.
If I can be of any help or support to newly diagnosed patients or anybody who's just fed up with it all, don't hesitate to get in touch.
Very best wishes from Shelagh Nugent