CML Horizons 2015 – Barcelona

This year the Chronic Myeloid Leukaemia (CML) Horizons conferences was held in Barcelona. The organisers have made this excellent collection of web streams and documents available for those of you that made have missed things. It’s a wonderful conference and I would highly recommend dipping in and watching some of the presentations; the PDF report is also an excellent read.

Watch the presentations here:

1 May 2015: www.cmladvocates.net/cmlhorizons/cml-horizons-2015/video-streams-day-1-fri

2 May 2015: www.cmladvocates.net/cmlhorizons/cml-horizons-2015/video-streams-day-2

3 May 2015: www.cmladvocates.net/cmlhorizons/cml-horizons-2015/video-streams-day-3

Alternatively, see all sessions as webstream-links and PDFs: www.cmladvocates.net/cmlhorizons/cml-horizons-2015

I’d also like to share the brand new CML Horizons 2015 conference report, which provides a summary of all sessions. www.cmladvocates.net/download/cml-horizons-conferences/cml-horizons-2015/578-cml-horizons-2015-conference-report/file

Finally, the photo gallery of CML Horizons 2015 can be found here: www.cmladvocates.net/cmlhorizons/cml-horizons-2015/photo-gallery

Huge thanks to the steering committee of the CML Advocates network for sharing this and congratulations on another superb year. Kris

Leukaemia Care: Patient and Carer Conference 2013

Yesterday was the Leukaemia Care Patient and Carer Conference held at Worcester Rugby Club. Anyone who reads this blog will know how fond I am of Leukaemia Care and the event was tackled with the usual friendly, welcoming attitude we’ve come to expect from the family. Doctor Richard Taylor, independent member of Parliament for Wyre Forest between 2001 and 2010 and co-Leader of National Health Action Party, facilitated the day. As President of Leukaemia Care he was the perfect choice to ensure the day ran to time and bring order to discussions.

The day started with a presentation on ALL (acute lymphoblastic leukaemia) from Monica Else, a senior scientific officer from the Institute of Cancer Research. Monica’s husband, a patient,also attended and they provided a fantastic insight into how the science translates into real life. This was followed by the inspiring Lisa Nelson who, although enduring two transplants, brought optimism and courage to the stage. Tuney Thomas, a clinical nurse specialist from Worcestershire Royal Hospital spoke about chemotherapy and cut through the science and rumour with panache. Deborah Alsina, CEO of Bowel Cancer UK, spoke from a carer’s perspective as her husband has leukaemia. Their story of imatinib, dasatinib and babies struck a chord with me and it has been a long while since I have been captured by a speaker so much. I’m not sure anyone in the room wanted her to stop.

After a very tasty lunch break with the opportunity to catch up with old friends and new, we headed into breakout sessions on clinical trials and benefit advice. John Donohue, a charted clinical psychologist from Russells Hall Hospital, spoke in-depth about the psychological and emotional experiences of blood cancer patients. This was a difficult one, a very divisive subject and John handled questions and wide-ranging topics carefully and with care.

Then it was my turn. I thoroughly enjoy spending time, talking and sharing my experiences with an audience, it’s a very liberating and cathartic thing for me. This was also the first time, against advice, I spoke about sperm banking and fertility treatment. Without it I wouldn’t be a Dad; it is so important for the cancer patient. I’d like to think the delegates felt comfortable, well they laughed in all the right places, although I’m not sure they’ll ever hear a bell ringing the same way again. The day finished with a panel discussion, which I was part of. Lots of questioning and a fascinating discussion about the part Facebook plays in the care network. My good friend Nigel Deekes was in attendance and delivered some impromptu and informative words about the subject.

What struck me from the day was that Leukaemia Care really do care, they are a fantastic national charity who have great potential to make lives better. Controversially, perhaps, I did challenge them to bring more young people into the fold. I don’t think there was a delegate under the age of 25. Without young people, who are sadly the next generation of patients, I fear for any charity. The challenge was accepted with eager vigour as I expected. I can’t wait for the next conference.

I left brimming with new ideas, watch this space, and inspired by stories of courage and care. The Leukaemia Care team deserve a huge pat on the back for delivering a fantastic event and if anyone can tell me a better way to spend a Saturday I’d like to hear it.

www.leaukaemiacare.org.uk

Lisa Nelson

Doctor Richard Taylor

Monica Else

Kris Griffin and Doctor Richard Taylor

CML Aide Memoir free download

Just a very quick post, I wanted to make available an Aide Memoir I’d produced for the CML Horizons 2013 conference in Prague. It contains some hints and tips on becoming connecting using social media and has some good CML website links on it.

A big thank-you to Lisa from One of A Kind Creative who put this together for me.

Kris

CML Aide Memoir Download

CML Horizons Conference, Prague – Day 2

That was a late night! I have a habit of doing this, always the last to leave the party. I won’t tell you what time I crawled into bed, what happens in Prague stays in Prague. So after an omelette, espresso and eye cream the day begins. Upon entering the conference room I’m grabbed by a delegate I met last year who asks me how I am able to look younger than I did last year? Today is going to be a good day!

Jane Apperley, a leading light in haematology and transplant developments from the UK provides an interesting insight into the science of transplants and if they still have a role in treating CML. Of course the answer is yes. It’s clear that TKIs have helped and there is great work still happening, survival rates are good and improving, it’s becoming clear that an early transplant decision presents a better outlook. I look forward to sharing Jane’s slides with blog readers.

Tim Hughes took the stage again to present the latest data on STOP trials. It’s clear that his TWISTER trial is backing up the data on the French trial, 40% of patients stopping imatinib therapy under controlled conditions stay in remission. Where the CML came back treatment resumed and all patients returned to remission. Success criteria improved with combination therapies. Recent STOP 2G-TKI in France have shown that there is a success rate of around 60% with patients on dasatinib and nilotinib who stop under controlled circumstances. There are clearly many STOP trials happening, results are promising, interferon, and possibly immunotherapy, certainly help and it is well worth us keeping our eye on results. It’s important we talk about this and tell people, especially politicians, this is the cure we allude to but worry about pinning our hopes upon. Our hopes are well founded and just in the last year I’ve seen rapid developments.

“Killing the Last Leukeamic Cells” certainly got the attention of the audience and this was a genuine statement. Who’d have thought we would be having this conversation 10-15 years ago? The key, we found out, is detection and a far more sensitive method of tracking but, again, the talk was of cure and absolute belief that this can happen.

I thoroughly enjoyed giving my talk about being connected and using social media as an advocacy tool. It was a very humbling experience to be invited and I’m very grateful to the steering committee for the opportunity. Things went well, I felt like I could have gone on and on, always the same when you are enjoying yourself but I hope delegates were enthused and understood the power of being connected.

The afternoon session covered vital topics like quality of life, adherence and pregnancy. Fabio Efficace presented detailed data on quality of life and the devastating effects of fatigue on the CML patient. Understanding side-effects is key to developing new treatments and managing old ones. Quality of life is something that must go hand-in-hand with staying alive.

On the subject of staying alive we discovered that one fifth of patients surveyed in a recent poll were non-adherent (they didn’t take their tablets when they should). We know that high adherence is key to treatment success so this comes as a surprise. We need to support patients and inform that taking medication every day is important. It is easy to shirk responsibility and hope that someone else manages the message but the reality is that this is collective responsibility and we must all play a part in supporting the CML community and communicating how important adherence is.

Doctor Jane Apperley took to the stage again this time to present CML and pregnancy. There are clearly issues taking TKIs and the advice was for women to come off treatment during pregnancy. For men sperm banking is the safest method. It angers me when I read self confessed experts giving bad advice, particularly about pregnancy. This is not an issue we should be gambling with. Professor Apperley is a leading light on this subject and she is very passionate about enabling patients to become parents. Ultimately there is another life here at stake. I am thankful to my first consultant who ensured I sperm- banked on diagnosis. Without that advice I wouldn’t be a Dad now; thinking about my little boy Luca, this is a very sobering thought.

The day concluded with patient groups and advocates from around the world presenting the work their groups were doing. Bringing developments together in this way certainly gave the day a truly an international feel. It certainly bodes well for International CML Day later in the year.

The evening brings a chance to socialise and relax away from the hotel. What for breakfast tomorrow? What time will I get to bed? And how many more times will I try and crack a joke with a non-English speaker only for it to fall flat?

All these answers and more tomorrow. Same bat-time…same bat-channel.

Kris

The CML “club” in Prague

It’s late, I’m writing this in bed an hour after I had the BEST club sandwich I’ve ever eaten. I’ve spent most of the day travelling, finally arriving in Prague just a few hours ago. I’m speaking at the CML Horizons 2013 conference which is being held over the next 3 days. I was lucky enough to attend CML Horizons 2012 in Munich last year and it was only on my journey to the hotel with delegates I met last year that I remembered just how intense the conference is. After exchanging pleasantries and accounts of weather in our various countries the topic soon landed on generic drugs and pricing. All of a sudden, after 8 hours travelling, I had to up my game. The names of drugs escaped my brain, numbers suddenly became random strings and I found myself working hard to keep up. The 160+ delegates will be bombarded with info over the forthcoming days, ready for us to disseminate to our respective countries when we get home. It’ll be good to see friends and spend time with the Midlands crew: Tony Gavin (from Leukaemia Care) and Nigel Deekes (who runs the CML-UK Facebook group).

I’m looking forward to delivering my talk on using the Internet for advocacy, that’s on Saturday, and hearing from a variety of people from around the world speak about their particular CML specialism. The conference will inspire, invigorate and drive many of us on again to continue campaigning, publicising and pressing the issues that need to be dealt with.

I’m going to try and blog at the end of each day with details of what we have heard. Feel free to ask questions or leave a comment, in fact I’d love you too.

All the best,

Kris

Event: Leukaemia and Lymphoma Research Impact Day 13th April 2013

I’ll be speaking at this free event so please come and say hi if you spot me. Thanks, Kris

“We won’t be satisfied until every patient with blood cancer can live fully the life that they were given; a life where the diagnosis of a blood cancer has no impact.

In the 53 years since we started the journey to beat blood cancer, our mission has never been clearer: we stop people dying from blood cancer; we make patients’ lives better and we stop people getting blood cancer in the first place.

In 2013, thanks to the collaborative efforts of many throughout the world, survival has improved dramatically since research began in blood cancer, but there is still work to be done both in saving more lives and minimising the impact on the quality of life of patients before and after treatment.

Join us in London on 13 April to hear how we are doing, meet some of the amazing people involved and discover why there has never been a better time to make a positive impact on the world.”

Event details

Date: Saturday, 13 April 2013
Time: Starts at 9:00 am

Location:
Tower Hotel
St Katharine’s Way
London
E1W 1LD

http://leukaemialymphomaresearch.org.uk/event/special-events/impact-day-2013

Britain Against Cancer 2012 report

Recently I attended Britain Against Cancer, a one day conference in London where politicians, clinicians and patients come together to talk about the issues surrounding cancer policy in the UK.

I attended this conference as I wanted a chance to explain why CML patients need access to a wide range of treatments.  Regular readers will know that I am currently being treated for Chronic Myeloid Leukaemia (CML) with dasatinib. Whilst other treatments, including imatinib and nilotinib, are available having been approved by NICE, dasatinib is only available on the Cancer Drugs Fund (CDF).

I am concerned that, across the country, patients have variable access to dasatinib and other non NICE approved treatments through the CDF.  It is important that CML patients have access to a wide range of treatments as for some, neither imatinib nor nilotinib prove clinically effective or patients find the side effects too severe.  This is the reality for CML patients and I wanted to make sure that attendees at the conference were aware of this.

The first speech I heard was from the Labour Shadow Health Secretary Andy Burnham and what struck me most were his comments about the Cancer Drugs Fund (CDF).  The CDF is designed to give patients access to cancer drugs that have not been approved by NICE and this is the route that many CML patients take in order to access dasatinib.  In his speech Burnham explained that he did not support the continuation of the CDF and he did not view it as a funding priority for the NHS.

I disagree with this.  My personal experience of the CDF is that patients can receive drugs that they otherwise would not. If the CDF is removed and nothing is put in its place then there is a risk that access to CML drugs will get worse, not better.

I raised this issue with Andy shortly after his speech and explained that it is critical that patients have access to as broad a range of treatment options as possible.  He agreed that this is indeed important and requested that I write to him following this conference.  I will of course write to him and make this case in more depth.

After taking part in a session about including the patient voice where I highlighted the need for patients to be involved with cancer networks, we took a break for lunch.  Refuelled and refreshed I then heard from Sir Mike Richards who was the former National Clinical Director for Cancer and the now Director of Domain One of the NHS Outcomes Framework.  I explained to him that it was important that not only were the right treatments available, but that the NHS didn’t lose sight of treating rarer cancers such as CML.  Sir Mike agreed and pointed to the recent figures on CML, as reported on this blog post , which showed that the deaths from CML have halved.

We then heard from the Secretary of State Jeremy Hunt who gave a wide ranging speech that focused on the importance of improving patient outcomes and even covered dementia.  It was interesting to hear him speak so much about dementia, as it is expected that this will be a core focus of the Government in the run up to the next general election in 2015.  I managed to catch up with him afterwards and made clear my views about the importance of the CDF.  He told me that whilst the Government is very proud that 23,000 people have currently received treatment through the CDF, he could not yet give further details as to whether the scheme would be extended post 2014.  I intend to write to Mr Hunt to raise this issue again and to ensure that access to CML drugs is at the forefront of his thinking in the run up to the next election.

I found Britain Against Cancer to be a very rewarding experience and I welcomed the opportunity to express the views I raise on this blog, in person to politicians and key decision makers.  I am keen to use the momentum from this event to further my campaigning activity and I will continue to post details on this blog.    Kris

Meeting Labour Shadow Health Secretary Andy Burnham MP at the Britain Against Cancer conference.

LINK: All Party Parliamentary Group on Cancer – website

 

CML Patient Day – Glasgow – 17 November 2012

A date for the diary. The next CML Patient Day will take place in Glasgow on 17 November 2012. Keep an eye on details HERE.

Best wishes,

Kris