Barts Meeting - Summary of meeting now in thread - CLL Support

CLL Support

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Barts Meeting - Summary of meeting now in thread


A big thank you to those who arranged such a sucessful event at Bart's hospital. A great way to celebrate the CLLSA's 8th year. Thanks to Prof Daniel Catovsky and Dr Samir Agrawal and Dr Tim Farren for the medical input and to the two patients who told their stories, all very informative and helpful. Thanks also to the great group who gathered and hope that the 50% who had never attended such a gathering before felt it had been worth attending

Lymphoma Association, Leukaemia & Lymphoma Research, and Macmillam all provided support stands in the hall, with information to take away for patients. The Recipie book will come in handy.

Samir mentioned there were two statues of Henry the 8th in London on view and Bart's has one of them. Can't locate the other one. Tim mentioned the buildings like the Great Hall , Great Staircase with the Hogarth Paintings and Henry the 8th Arch had been used as film sets. A great location for the meeting and to look around

A report is being prepared and will be released here shortly

Photo of St Paul's take after a very long but worthwhile day !! Will take time to recover but worth the effort

19 Replies

Yes I have seen that one - it is the other one Samir mentioned but could not say where it was that I was trying to locate. May be it is the only one !!

I found the ICHOR trial really intersting - doing the research the right way around. What did you find was the most intersting area covered?

HAIRBEAR_UKFounder Admin

Thank you for getting A post up Myrddin. It was great to see so many attend and so many new faces.

Seeing familiar friends again and finding out how everyone is getting on is one of the best bits of the day for me and of course meeting up in person for the first time with more from our group here.

CLLSA are continuing to develop relationships and collaborations to support members. It was a privilege to have supporters from Macmillan, Leukaemia & Lymphoma research and Leukaemia Care at the meeting including a table of literature provided by Lymphoma Association to add to that of the others. I was able to thank them today and was pleased to hear much information and literature was given out on the day. What wasn't to hand on Tuesday they were sending out today and several CLLSA members were able to join their initiatives and local groups.

It was an information packed day and good that Barts could discuss their progress with their on-line outreach project to support care in the community and also their ICHOR work using their pet novel inhibitor in trial. It seems every centre of excellence are developing their innovative approaches to managing and treating CLL and Bart's has a few exciting projects they wished to tell all about. Dr Agrawal was a winner of one of the NHS Innovator Awards in 2006 for his work on the introduction of new diagnostic tests for the diagnosis of leukaemias. his team are now taking this work further into developing research in this same area that may lead to future breakthroughs and treatment improvement. The outreach program is also a revolutionary leap forward, who knows he may soon be up for another?

Dr Agrawal and Dr Farren are now in the US to join the global medical haematological community at ASH as latest work including their own is disclosed. .

Myrddn mentions,A report is being prepared and will be released here shortly, I hope we can have this with you tommorrow. As the Doctors are away for a week we will hold on some of the detail of their projects until they return. I'll ask them to do a write up for us to follow up with.

Thanks again to everyone for making it a good a day.


Hi guys,

I had been meaning to put together a write up about the day but have been busy since and at hospital in Bournemouth today.

I particularly enjoyed Samir Agrawal's session about the ICHOR study and got the chance to tell him so. I also spoke to Steve and Anthea about their experiences and Anthea's looking at the possibility of the RESONATE2 trial that I am on (now that she is 65!).

I too would like to see the slides again as my notes are scant. I have a short note about Interleukin 6 , the JAK2 blockade and chemosensitisation. Also the Ruxolotinib.

It was good to meet Mike and Penny and Jan and Kevin and Nick again. Also people that I had met at Southampton meetings.

On the way back to St Paul's tube we got stopped at the end of the Old Bailey as the van carrying out the two muslims who killed Lee Rigby was brought out and the area cleared.

Shame we didn't get to meet Myrddin.


HAIRBEAR_UKFounder Admin in reply to Mikey47

Hi Mikey it was good to see you again. We have a report in hand thanks, we will have it up soon. Slide presentations may be made available and added to the website report in the future. I am sure Drs Agrawal and Farren will ensure we have something from them. Prof Catovsky's was from a colleague there may be permissions required. I will follow this up though.

We will out line the ICHOR study tomorrow but get a more detailed review from Dr Agrawal and team on their return from ASH

Myrddin and I were having coffee opposite the exit to the old bailey when the armed unit pulled up and drew weapons ahead of the convoy leaving the pound. they weren't taking any chances with security.


I think the other statue of Henry 8th is probably the one in Madame Tussauds :)


Hearing these things makes me wish I'd been there. Is there any chance that the speakers' talks could be recorded in future, and available to others?


Ernest2 in reply to PaulaS

Hi Paula,

That is a tricky one, although I think it has may have been done before by CLLSA and even perhaps some video. You have to first put yourself in the speakers shoes, and remember the result may be available for the world to see, so you have to get it all 100%. It's a difficult conundrum.

As Nick and Myrddin say above we do have some fairly comprehensive notes, but a few things we must sort out before publishing, that just can't be done as quick as we would all like.


Paula, I have a DVD of the midlands conference May 2012 which Chaya Venkat also attended.

It's the Midlands Fifth Anniversary Conference, so may have been a special occasion. The conference was sponsored by Roche and MacMillan.

HAIRBEAR_UKFounder Admin

CLLSA have not recorded other meetings yet as we have limited resources and are sensitive to the wishes of speakers and attending members. There may still be copies of the 2012 DVD available through

Hi I really enjoyed the Bart's meeting as its my home hospital and my consultant. I especially enjoyed the science and meeting other people in the same boat as myself. It would be great if we could video these meetings then put them on the net. I have watched so many of Andrew and Brian's and found them invaluable information. So even if we cannot video the whole can we not get short videos of interviews as they do. Perhaps we could even get some help from them? Could the trustees not invite them to a meeting and get their help in setting something up?

HAIRBEAR_UKFounder Admin in reply to jangreen

Hi Jangreen I have just posted this info in another thread for you. Unfortunately the agenda fixed for Barts was so full we were unable to announce our own developments.

So here is as opportunity to tell some.

You will be pleased to learn about developing colaborative initiatives between CLLSA and partner organisations to produce material with a UK and European perspective. For hosting here and on the CLLSA website. I am pleased to announce we are moving forward with a more active collaboration and alliance with Andrew Schorr and Patient Power. Partners page

Short term CLLSA and Patient Power have designed a few new video players to make available groupings of different types of video as they come available from variouse venues: one for Living with CLL, one for UK & European Perspectives, one for Global perspectives., We will also be creating material from interviews with UK patients and carers these are in planning for the UK. This all takes time but is underway.

We will not be videoing patient meetings or speakers talks. But hope to be able to interview selected patients, carers, advocates, health professionals and clinicians at these create relevant educational material in the future. at the moment Andrew is at ASH with Brian and others interviewing selected people to provide a variety of perspectives from those attending Ash.

When every one including our own are back from ASH we will announce things properly. I am hoping to get the initial players sited pretty soon after a few early fixes have been carried out. nearly there.

Nick. ,

There are a lot of privacy and disclosure issues if meetings are recorded. I think that short interviews with the presenters , along the Patient Power model, would give us what we want and avoid the privacy issues and be very cost effective. They would be ideal for inclusion on the web and for playing from the CLLSA site.

TITLE: CLLSA Meeting St Bart’s Hospital, London 3rd December

The historic Great Hall at St Bartholomew’s Hospital was the magnificent venue for the London meeting of the CLLSA. The meeting was well attended, filling the Hall, and with a good balance between recently diagnosed and pre and post treatment.

Presentations were made by:

Professor Daniel Catovsky is one of the original medical advisors to the CLL Support Association (CLLSA), which celebrates its 8th anniversary this year.

Dr Samir Agrawal MRCP FRCPath PhD Consultant Haemato-Oncologist at St Bartholomew’s Hospital (Barts), and The London NHS Trust. He is a leading expert in CLL and one of the Trustees of the CLLSA, and a Medical Advisors to the association,

Dr Timothy Farren, Post doctoral researcher and Clinical Scientist at St Bartholomew’s Hospital (Barts), and the London School of Medicine and Dentistry.

Two Barts Patients also talked about their journey with CLL.

Professor Daniel Catovsky - notes from Presentation

A wide-ranging presentation suitable for all backgrounds

Difference in response to CLL: Male and Female

There are differences in response to CLL between Male and Female patients. CLL in Women: Occurs at an older age, Staging is generally lower, Prognostic markers are better, Less cases of aggressive disease

Treatment for Women: Overall response rate (ORR) is better, Progression free survival (PFS) is longer, Overall survival (OS) is longer.

This despite the fact he ratio of Male to Females starts the same for Monoclonal B-cell lymphocytosis (MBL) the precursor to CLL.


Some of the newer mutations of interest are TP53 , NOTCH1, SF3B1, MYD88

Monoclonal Antibodies (mAB)

Rituximab, the “R” in “FCR” is a monoclonal antibody targeted against the B-cell surface CD20 antigen. Trials are running using Ofatumumab and Obinutuzumab. Tests are showing worthwhile improvements in PFS over Rituximab. These studies have been for older patients, with Chlorambucil used for the Chemotherapy component.

Chimeric Antigen Receptor modified T-cells (CART) Therapy

CART - Patient Power Video interviews explain developments past and present in this area.

2012 Prof John Gribben (Barts)

2013 The Promising Path for CAR Immunotherapy

The latest version of CART research now involves the further modifying T cells from unmatched donors, it is hoped to produce a pre prepared infusion. So that when the graft versus leukaemia response is activated these modified T cells will it is hoped only remove tumour cells and not healthy B cells as well. This method may allow production of cells capable of use for patients whose own T cells function is already compromised.

This is extremely expensive and at this stage highly experimental.

You can also view the latest developments in immunotherapy discussed this year by Prof John Gribben of Bart's in the patient Power video:

How Existing Immunotherapy Might Fight CLL:

New Drugs exploiting B-Cell Receptor (BCR) signalling pathways

We are aware of the new drugs on trial, most well known Ibrutinib (now called: Imbruvica), that interrupt the signalling pathway from the B-Cell Receptor (BCR) on the B-Cell surface, to the nucleus within. As these drugs do not create a lasting remission as sole agents when used to treat CLL they need to be taken continuously to maintain this or used in combination to strengthen remission. there is not enough long term data yet to see the long term picture.

There are three groups of kinase inhibitor each with many different agents coming into trial that will be targeting them. Several new ones are added to the list below of those you may already be familiar with.:

BTK: (Bruton’s Tyrosine Kinase) Ibrutinib, CC-292/AVL-292

PI3: (Phosphoinositide 3 Kinase) Idelalisib (GS1101/CAL101), IPI-145, TGR-1202

Syk: (Spleen Tyrosine Kinase) GS9973, Fostamatinib (R-788), PRT2070

These pathway inhibitor drugs are planned to be combined with other agents in many ways over the coming years.

It may be some time before this approach is available for first line treatment for the majority As these new drugs have and are mainly being trialled in relapsed and refractory patients to start..

A few observations of Fludarabine / Cyclophosphamide / Rituximab (FCR) Chemoimmunotherapy

Some groups of patients within CLL are still in complete remission ten years after treatment. This group have been identified as those with mutated IGHV.

FCR is the current gold standard treatment in the UK for fit patients, and has dramatically improved outcomes for many requiring treatment. Originally developed under the guidance of Dr. Michael Keating, CLL specialist at MD Anderson.

Combination Therapy

Various potential combination therapies involving novel inhibitors were described, and the general idea was that actions of different novel drugs probably don’t overlap, and combinations create synergy as each operates on different mechanisms. Long term we will see combinations involving different antibody therapies, modulators and novel inhibitors together. These may create MRD status and strong remissions using less toxic footprints.

In the UK Chemotherapeutics are also in trial in combination with novel small molecule inhibitors to develop strategies that may also produce MRD status and a lasting remission.


•(Q)With the new drugs & technologies should we be considering starting treatment earlier? (A) With current knowledge the answer is no, but we may be able to guess which treatment might be the most effective.

•(Q)Do the new treatments give an improvement in the condition of the bone marrow, given that this is difficult to test? (A)Thought to be yes, but may be indirectly.

•(Q)When best to look at patients prognostic factors?(A) Currently only used when treatment is being considered

This allowed Prof Catovsky to point out that what are considered poor prognostic markers today relate to the treatments available now. Novel therapies are producing good responses in these categories; therefor what is considered a poor prognostic marker today may not be in the future.

Prof Daniel Catovsky’s presentation ended with a warm round of applause for his presentation and lifetime’s contribution to medicine and CLL.

Afternoon Presentations

The afternoon session was introduced by Arthur Graley - thanking Dr Samir for making a whole day available for the gathered meeting and for his help addressing medical issues for the association

Dr Samir Agrawal Presentation – Reality Check

Dr Samir said he was honoured to be a trustee for the association and how it was a reminder of the human side of their role, which can easily be forgotten.

The new drugs, Ibrutinib, Idelalisib have shown great activity for those with advanced Refractory CLL. These new drugs are currently not licensed. Initially they will be licensed for use by those with advanced refractory disease. Use as first line treatment may be some time off.

Prof Catovsky mentioned how the treatment of CML has been transformed from a killer, to one that is managed possibly cured by use of tablet treatment for life using Imatinib,

Unfortunately CML bears no relation to CLL . In CML the scientists identified one abnormality, which in not found in any other cell in the body. Imatinib is able to use this and not affect other healthy cells.

Unlike CLL where current inhibitors in trial are not CLL cell specific. The hope is that a similar approach will work for CLL eventually but this may not be possible because of the complexity of CLL. It is still early days.

Dr Samir Agrawal Presentation - ICHOR study

ICHOR (Blood of Greek Gods) is a new innovative UK study by Bart’s to attempt to generate a future completely new kind of treatment. The ICHOR philosophy is to start with the science of the cell operating mechanisms and biology, and then try to devise a treatment from that

Chemotherapy achieves a good kill by focusing on rapidly reproducing tumour cells where they can target the cancer. CLL cells accumulate and replicate less quickly that is why treatments may not be as effective. ICHOR attempts to induce chemo sensitivity in the CLL

This approach to treatment would be a two-step process: sensitisation, followed by chemotherapy. The level of Interleukin -6 is higher in CLL and so has been identified as a potential prognostic marker. The inhibitor being trialled to sensitise CLL cells to treatment reagents blocks signal pathways that are involved with this inflammatory chemokine.

Ruxolitinib is the existing inhibitor being trialled.

Initial requirements for volunteers for the trial once opened include a normal Neutrophil & Platelet count.


Key steps in ICHOR study - Study drug, by tablet, day 1 -7, blood test day 1 , 2, 3, 4, 8, 15 and 28 days. The blood will be used to check in the laboratory whether the cells have been sensitized and whether one chemo treatment would be better than another

Does Ruxolitinib affect normal cells? Jak2 is in all cells but is not active in all cells. This drug caused a drop in Neutrophil count in normal patients but the levels recovered in days once they stopped taking drug. The trial involves taking the drug for only 7 days, which is expected to sensitise the cells without significant negative effects. The drug has been used for treating other conditions for about 5 years.

Dr Timothy Farren – Transform Outreach Cancer Care. TOCC

This pilot project aims to bring the support of the CLL specialist team into the home via the internet and follows on from work done in Leeds. The Bart’s initiative will use modern technology to reduce the cost and patients effort/risk involved with visiting the hospital for blood tests and consultations.

TOCC features include:

•Online surveys to record patient symptoms

•Blood testing kits sent to patient – so blood taken locally at GP surgery. The bloods will be fast tracked to the hospital via Royal mail.

•Blood results and charts will be available ahead of any consultation

•Ability for Video or Phone consultation with specialist

•Empowers the patient

•Feedback to :

Patient Perspectives

Two Bart’s patients then give us a perspective on how their treatments had gone.

Patient 1– Experience of novel agent Lenalidomide in a CLL clinical trial

Patient 1 was diagnosed in 2009, shortly after diagnosis and after considering all the pros and cons. was entered into the phase 3 “ORIGIN” trial of Lenalidomide . An unexpected complication meant the starting dose was not possible initially.. By the time the initial dose was reached the trial was stopped on safety grounds.

The good news is the patient has seen a drop in the ALC since coming of the trial, despite not completing the intended course of treatment.

Patient 2– Experience of a “traditional” treatment for CLL FC

The audience was moved by the honesty and sincerity of the difficult experience described to us.

Patient 2 was diagnosed in 2002 following a routine company medical check-up at the age of 41. Over time pain in the glands was noted after long days, and CT scans followed. Further test were carried out to confirm CLL. Bone marrow samples were taken, and whilst afterwards on reflection these were tolerable, the lack of knowledge beforehand was unsettling.

Fludarabine / Cyclophosphamide (FC) treatment was started as this was before Rituximab was available. Patient 2 explained several complications experienced in addition to the psychological burden of the CLL and all the treatment.

Patient 2 had the support of his company, and kept working during the long period of treatment, taking 5 days off work for each round of the chemotherapy. The good news, 6-months after treatment, Patient 2 was declared to be in remission and which has now lasted 6 years.

It took great courage to take to the lectern and share personal stories with so many, thank you to both for this at such short notice.

Final questions with Dr Samir Agrawal

Dr Samir Agrawal ended the presentations with a final question and answer session here is an example of one answer how he views CLL sweats:

•Night Sweats: CLL is not the only cause of night (and day time) sweats. The key word is “Drenching” a need to change cloths/bed sheets.. Only regular Drenching sweats would be considered a CLL diagnostic factor. There is a blood test available where ladies are not sure whether their sweating is due to CLL or the onset of menopause

Arthur Graley then concluded the meeting with thanks to all those who had helped organise the meeting especially Sarah Tobin , warmly wishing us all safe journey home, and best wishes to us all to look forward to Christmas and the New Year.

There are two meetings currently being planned for the next 6 months the first in spring at Glasgow and then at Cambridge in June/July.

Thanks to Leukaemia & Lymphoma Research, Macmillan, Lymphoma Association and Leukaemia Care for provision of educational and support literature and their support on the day.

ErnieUK & Myrddin reviewed HAIRBEAR 23:02 07/12/2013

sparkler in reply to Myrddin

Yes, thanks for such a good summary of the day. It helps to make up for not being there!

sparkler x

HAIRBEAR_UKFounder Admin

Thank you both for your overview report of the meeting. It is a difficult task and I think you have captured much of what went on. It was a taxing day mentally as there was a lot of new medicine covered and so many different types of treatment approaches discussed and several treatments I'd not heard of before. You have done well to reduce this down. I know the morning talk did baffle many who were new to CLL and meetings.

This thread can be used to discuss explanations, to help peoples understanding. often the speakers provide an easy overview of CLL to aid those at the beginning of their journey. I think Bart's had a lot they wanted to share of the exciting developments in CLL medicine so time did not allow for a CLL explanation . That was unfortunate as looking at the hand count at least 50% of those attending were first timers. Ahead of the next meetings we will discuss this provision.


Thank you Myrddin for putting all that together for us. No easy job


Myrddin in reply to Hidden

Joint effort ErnieUK did a lot of the work and HAIRBEAR reviewed and updated - hopefully includes enough info to give a flavour of the meeting - but not the same as being there and hearing first hand with slides .

Social side is a big part of the meeting too - catching up with those you have met previously and those who are at their first meeting. Was good that there were so many who were attending their first meeting though not all of these were recently diagnosed.


I have absolutely no problem in saying a big thank you to all collaborators, for putting together a post which has indeed given those of us who were not there a flavour of the meeting. Agreed it's not the same as being there, but better than nothing, and I look forward to maybe attending myself one day..

Thank you


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