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2016 UK CML Patient Day

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Professor Copeland, the Chair of the UK CML Working Group, has contacted CMLSg to say that she is starting to think about the programme for the 2016 UK Patient Day, which will be held in Manchester on 24th September - the venue soon to be confirmed.

I wondered if those of you who attended the 2015 London meeting, or those who plan to attend this years meeting, would give some feedback about what you feel worked well at the 2015 meeting, as well as any ideas for additional topics that could realistically be included for this years meeting.

2015 meeting:

  • Was the level of content sufficient?​​
  • Webcasting the day... was this helpful
  • Audience participation via mobile phones- was this helpful/enjoyable?

What topics would you like to see repeated or ideas for new topics to be included this year.... which might include the following:

  • Understanding molecular testing/qPCR testing- would you like to see this session repeated?
  • Available data from Destiny and the various EU stopping trials
  • Cancer Drugs Fund and access to 2nd Generation TKIs in England
  • Access to 2GTKIs in Wales/Scotland/N.Ireland- how does it differ from England?
  • Issues surrounding the introductions of Generic imatinib- the new brands? How do they differ- if at all- from Glivec.
  • Individual patient stories - should this session be repeated? was it popular/helpful?
  • Your ideas for specific breakout sessions?  Pregnancy/fertility etc./ Carers/family session......? Setting up local face to face patient group meetings?

Other ideas?

Thanks for your help,

Sandy

Hi Sandy

Thanks for letting us know and giving us the opportunity to contribute.

Could I personally suggest a topic on TKI withdrawal, or continued side effects after discontinuation of TKI's?

Maybe this would be of use due to some of the facts coming out of the EuroSki trial in Sweden, especially if patients are aiming for the long term goal of TKI cessation.

Also breakouts aligned to issues in which people facing similar concerns can volunteer to meet and chat, for example;

Fertility, side effects, trials, managing CML with other conditions.

I remember when I went to the Newcastle meet in 2014, I came away feeling like it was a missed opportunity to be in the same location as numerous people with a rare condition and not chat to each other. 

Anyway, just my thoughts.

John

Hi Sandy

I would like to second John's plea for a session on withdrawal and the possible effects.  

Also, a briefing on what the introduction of generic imatinib will mean for those of us who are doing OK on the original formula.

I'm not sure how useful webcasting would be for me personally, but I do certainly look at the presentations when they are available and find them useful and interesting.

I would also be interested in finding out ways of contacting other patients who live in my area - although I have chatted to one or two in the hospital waiting room, they may not be attending their next appointment on the same day or time as me, so contact gets lost.

Thanks again for all your hard work

Olivia

Just wondering how you are these days, John?

Best, 

Chrissie

I find Web casting on demand to be most useful.   I've tended to watch them when I can and also just skip the bits I'm not interested in.    (I'm self employed with my own business and so find it difficult to be away at all, let alone to attend something like this)

I'm not personally interested in Individual Patient Stories.... though I'm thinking something specific re "managing drug side effects" might be useful

I think your suggested break out sessions sound good.

Understanding molecular testing is something I'd suggest can't be repeated too often... unless there's a sense that those who support these events are already knowledgeable.   I do know though that every time I visit the specialst centre that someone asks me to explain.... I always suggest "ask your specialist" but I think folks often don't like to do that for fear of wasting time or maybe even seeming they just can't ask.

Data & stories re stopping trials are of huge interest to me.  I know DESTINY is still in process and too "young" so I want to know where else and how long and what happened and what's it telling us?    (What's the longest people have been SAFELY off TKI's?)   

I'd like to see something about the process of providing cancer drug prescriptions.... We all know that there's a real problem and that a lot of us have been forced to accept a VERY flakey service whereby we're traipsing around or waiting at home for a meagre month's supply.    VERY disruptive to lives.  VERY concerning having such a low supply.    VERY unacceptable.    

I think it would be good if there could be something like sessions from say Financial adviser / insurance company ... so many of us struggle to access products and when we find them they are inaffordable or contain massive exclusions.         Also something about what benefits are available e.g.  for those who perhaps are in hospital, having to travel a long way & miss time from work for appointments