Southampton CLL patient meeting

[HAIRBEAR_UK]

SOUTHAMPTON MEETING

We are fortunate to have Dr Andrew Duncombe MA, MB BS, DM (Oxon), FRCP, FRCPath, a consultant with a special interest in CLL as a guest speaker. I enjoyed his expert talk two years ago, when he focused on the current clinical trials. It will be interesting finding out how the landscape has changed.

I was unable to attend Liverpool but am attending Southampton and looking forward to hooking up with on-line friends.

There are still places available to join us at the Members' meeting of the CLLSA at:

Southampton General Hospital, SO16 6YD

1st July 2013, 10:30am to 4:00pm

The main purpose of all patient meetings is for you, the patient, carer

or friend to meet other people with CLL, and to exchange experiences.

Details of how to get to Southampton General Hospital are below and an information sheet can be forwarded on application..

The full programme will follow, register now if you wish to attend as numbers are limited .

To reserve a place please email the trustees' Personal Assistant at:

[e-mail] ,

or write to CLL Support Association, 39-40 Eagle Street, London, WC1R 4th

To attend our free patient meetings CLLSA membership is required, you can do this at the same time as reserving your meeting place by email at [e-mail]

Directions: cllsupport.org.uk/Southampt...

Southampton Hospital overview, maps and directions: nhs.uk/services/hospitals/o...

See you in Southampton

Nick

[pitbull]

Already registered, see you there

[simon2388]

These meetings look very interesting - are there

ever any sessions organised in the London area?

[HAIRBEAR_UK Founder Admin in reply to simon2388]

For the last few years we have had a meeting hosted by the CLLSA supported by GSK and London clinical consultants at the GSK HQ in Brentford. The next London meeting this year is in the great hall at St Bartholomew's London on December 3rd supported by Professor Catovsky, Dr Samir Agrawal and team.

[Quizzy]

Looking forward to my first CLL meeting

[HAIRBEAR_UK Founder Admin]

For those just registering here are the Southampton directions I have just added to the post; cllsupport.org.uk/Southampt...

Looking forward to meeting you

Nick

[HAIRBEAR_UK Founder Admin]

Hi Everyone please accept my apologies this is a little late, I think the recent upgrade, summer hols and the broken search may have prevented us sharing our experience of this here or is there a thread I can find?. Here is the report I filed for the newsletter and association website update. I believe Mikey and others may have notes or feedback they may wish to add.

Report on the Southampton meeting 1st July 2013

Travel to July’s meeting at Southampton General Hospital was assisted by good weather, was well attended and enjoyed by a good many. Dr Duncombe’s talk was very extensive, focussing on some very important areas. One of those was about CLL immunity issues which included CLL self-help, prophylactic antibiotic medication and vaccination strategies that are important for CLL patients. This was also expanded on in his Q&A. His power point slide detailed CLL specific and the most current recommendations about annual flu vaccination, also pneumonia, Hib and meningitis vaccination strategies too.

Dr Duncombe spent a while reviewing new treatments in trial and their prospects and focussed on the success of UK involved research and drug developments likely to come available for us that will work. He spent some time reviewing performance graphs between Rituximab and Ofatumumab . Showing us how successful this new humanised monoclonal antibody therapy is at targeting CLL cells, even for those with little CD20 which will not respond as well to Rituximab. Both new next generation monoclonal antibody therapies, Ofatumumab and Obinutuzumab, are currently entering the UK approval system and CLLSA as a stakeholder is involved in the consultation process.

Several trials were explored involving the new BCR inhibitors. Several may be coming available to the treatment naïve which compare different conventional combinations against those including the new inhibitors. These are offering several less toxic treatment options within the clinical trial environment. Some also have the important feature that they allow cross over at the end of the trial term to the other arm if disease continues to progress.

I feel sure Doctor Duncombe’s talk did not leave people feeling they may miss out. He confirmed that even some of those requiring first line treatment that are suitable to receive FCR will be involved in trialling the latest small molecule pathway inhibitors. CLL10 was planned to launch in November (now early 2014) enabling some to enter a randomised trial of the BTK inhibitor Ibrutinib plus Rituximab versus FCR. It is an exciting time as there were updates given on several of the trials coming available for different populations that involve Ibrutinib and other inhibitors such as Idelalsib GS1101/CAL101.

Thank you Dr Duncombe, the Southampton trials team and the patient panel for a very interesting question and answer session, which the doctor extended until time allowed. The relaxed and informal coffee time chat was enjoyed and engaged everyone, the Q&A had to be halted to allow us all to depart. Thank you Andrea for chairing an event that was relaxed and very informative and to Sarah for her work setting it up and manning registration.

There were more smiles evident on people’s faces as they were leaving. It was a very comfortable meeting; a big thank you to all who joined us and helped put it together. It was special for me as I got to meet for the first time several who I spend so much time with on line. As I conclude this report more news has come in from research that adds much hope for those feeling trapped with FCR treatment. Andrew Schorr at Patient Power provides a video that touches on the thinking about those still in remission after 9 years post FCR. “Is Long-Term CLL Remission with FCR a Cure?” - “This is the first time in CLL the word "cure" has been discussed in relation to a chemo-based regimen.” patientpower.info/video/is-...

Nick

[Mikey47]

Cheers Nick, saved me copying over from Mac's.

Hope you are well,

Mikey