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2014 CML Patient meeting

If you would like to suggest a topic for this years Patient Meeting in Gateshead, UK the please put you suggestions here.
For example:

Understanding PCR results:
ELNet recommendations- understanding timelines and goals:
Pregnancy/Fertility issues and TKI therapy:
Stopping/discontinuation Trials:
Generic imatinib and access to 2nd Gen TKIs

Managing Side Effects:
Complimentary therapies:

I am sure there are many more subjects..... please let me know and I will pass on the most popular suggestions.

Sandy

Hi Sandy,

I met two people at Oxford who were quite "new" patients, and I think were a little overwhelmed with all the information. I wonder if there would be value in one of the breakout sessions being dedicated to new patients? I know when I was a brand-new patient, I had loads of questions that may seem quite basic now but at the time I had no idea.

Do you have a breakdown of attendees length of time with CML? If there is a sizeable group, maybe this is worth thinking about?

Another topic that might be interesting would be future therapies. I know this wouldn't be very detailed, but perhaps just a short piece on the kind of research that is ongoing into the disease. As with the OHSU "one down" thing some weeks ago, it is an easy trap to think that since we have good TKIs that there is no ongoing work for a cure.

David.

Hi David,

thanks for your feedback. I think Dr.O'brien (who is running the day this year) has an idea to cover the basics... but I think your idea for it to be a breakout session is a better one as the majority of attendees have at least a working knowledge of CML. Would you be willing to help with this kind of breakout session? It could be a sort of CML 101. I will ask if the registration form could include a tick box to indicate if someone is newly diagnosed.

Ongoing research to find a 'cure' is a big topic for everyone- I will ask if this is going to be covered- I am sure it will.

Sandy

Hi Sandy,

Yes - totally happy to help in this, or any aspect of the day to be honest.

David.

Not sure but how about a session on transplants? I know there are other forums but people often have it at the back of their minds and an overview may be of interest?
Also a session for those who want to ask questions of patients rather than experts? I think we all use social media to chat to others and sometimes it would be helpful to do that face to face.

K

That is a really good idea. At the Glasgow event a couple of years ago there was a session billed (I think) as a discussion of side-effects, but which turned out to be a presentation by one fairly recently-diagnosed young man, on his particular problems and experiences. OK in itself, but not what I had hoped for. Discussion on how to deal with side-effects - both physical and emotional, short-term and long-term - could be very useful. Perhaps some of the medical experts could benefit from hearing from us?

I'm looking forward to the day.
Olivia

Thanks David, Karen and Olivia. I think it will be a more successful conf. if it is designed around what patients want to know about. Your suggestions are good and I have sent them on to Prof. O'brien.

Sandy

Hi

Immunotherapy and personalised therapy are the two fast emerging techniques in lukeimia. Can we get some update and directions on this ?

Thomas