The third ALK Positive UK forum meeting took place at Maggie’s Cancer Care Centre in West London on 9th February 2019.
There were 20 patients and 22 carers present.
The meeting started with an open forum where attendees were divided into two groups in separate rooms. There then followed nearly two hours of wide-ranging discussion with patients giving an outline of their journeys.
Debra Montague, presented the following report on behalf of the Trustees of ALK Positive Lung Cancer (UK):
"Well, we have been up and running for six months now and what a six months it has been! For those who aren’t aware the first meeting of UK patients and carers was held in London on 7th July 2018 and 15 patients and carers attended. The meeting was addressed by Dr Popat, a leading ALK+ expert, whose expected 30 minute presentation lasted 1 hour 15 minutes and ended with “blokes like me don’t make change and progress happen, it’s people like you”. It was decided that the next meeting would be in Manchester and would consider the establishment of a charity.
A Facebook group was established by the end of July where 47 people were added from the worldwide group. July saw us on Twitter for the first time and we increased our social media presence by starting our Instagram journey in October.
The Manchester meeting was held on 13th October and, although not well attended, got through an enormous amount of business, including the decision to seek charitable status. ALK Positive Lung Cancer (UK) was registered by the Charity Commission in December 2018.
So what have we been up to in six months? Well, we’ve certainly been busy by the list below of achievements to date:
Our website went live on the first day of Lung Cancer Awareness Month in November. Unfortunately, the analytics function wasn’t activated until two weeks ago. The great news is we have had 144 visitors, averaging 11 mins viewing time in the last two weeks!!!
Our members have delivered the ALK Positive Patient materials to over 40 hospitals to date, which has resulted in us growing our support group to 125 now.
We now have 183 followers on Twitter and we have published in excess of 200 tweets in our first six months. During Lung Cancer Awareness Month, we generated 1500 impressions all of which raises our profile and helps change the face of cancer.
Our charity is now recognised by NICE and the SMC which has resulted in us being consulted on recent drug applications to both bodies.
We recently attended BTOG2019, the British Thoracic Oncology Groups annual conference, where over 900 delegates attended over 3 days. Our stand was very busy and many delegates took copies of our materials for their ALK-positive patients. We were mentioned during one of the symposia and were recognised in the poster Dr Fabio Gomes presented.
I attended a European Patient Summit organised by Takeda in April, where I was asked to share our story of how we came about, our aims and achievements to date. As a result of that meeting, ALK Positive UK has now been asked to join LUCE, Lung Cancer Europe, and the ACC, Advanced Cancer Coalition. I hope to have more news on this at our next meeting.
Both Takeda, makers of Brigatinib, and Roche, who manufacture Alectinib, have confirmed they will include details of our charity, website and support group in their patient leaflets currently in development.
So, what does the next six months hold in store? Well, I can confirm we won’t be resting on our laurels! Between us we need to make sure all ALK-positive patients throughout the UK are aware of the support group. We also need to ensure all oncologists and oncology CNSs know where to send patients for support and information. We also want to guarantee all pharmaceutical companies will engage with us when developing resources for ALK-positive patients.
In the immediate future, we will be launching an Information Pack for all newly diagnosed patients with top-tips on how to ensure they receive the best treatments and care irrespective of where they are being treated.
We are also exploring the option of an app to support patients recording important dates, test results, side effects and mood. We will be asking members for their input into this very shortly.
I would just like to say thank you to everyone for supporting each other on the Facebook page and sharing their good news stories. I regularly see posts stating what a great group it is and people have found it very informative and supportive. This is down to everyone and I couldn’t be prouder being a part of such a caring group of people.
See you in six months, with hopefully more news on what’s been achieved!"
Debra was thanked for the report and the Trustees were congratulated on their achievements in such a short space of time.
Dr Rohat Lal of Guy’s Cancer Centre spoke and answered questions for an hour. Some of the matters discussed were:
It is important to get the right testing at the key moments of initial diagnosis and progression, so that the best treatment can be provided. All necessary test are available on the NHS. There is a need to develop liquid biopsies. Brian biopsies are too risky. Bone biopsies need oncologist and pathologist to work together so that no lesions in soft tissue are missed.
It is essential that all oncologists understand the appropriate pathways for treatment and this could be the subject of a research project.
It isn’t yet clear whether using chemo after the failure of a TKI to “mop-up” residual cells was effective but radiotherapy for small lesions might be appropriate. Trials are in progress with encouraging results.
Sequencing of TKIs is an issue. There is a case for using the best drug first but licensing conditions may be a factor to consider.
Large proportion of ALK positive patients will develop brain mets. There was a discussion about the DVLA guidelines on the withdrawal of driving licences. Important that oncologist clearly understand the guidelines and to ensure that the DVLA apply them correctly. Important to get this on the agenda at meetings of oncologists
There was a discussion about the use of off-label drugs. It is an attractive idea that certain drugs can block pathways that cancer cells might use to progress but there is no clinical evidence to support this.
Immunotherapy is not proving very effective for ALK patients.
Doctors do not object to second opinions provided they can respect them.
Dr Lal thought that the Charity’s first priority should be to support newly diagnosed patients and to help them ensure that they are tested and then get the right treatment. In due course, the Charity might consider establishing its own medical research panel and seek funding for a UK project.
Dr Lal closed by congratulating the Charity on its achievements to date.
Debra thanked Dr Lal for his inspiring presentation.
Sinead Cope of Maggie’s Centre said that Maggie’s exists to support anyone with cancer and their families and friends at anytime and wherever they are. They provide emotional, practical and social support on NHS hospital grounds. People can drop-in anytime without an appointment and the service is free.
There are 22 centres throughout the UK and each provides a wide range of courses as well as one-to-one psychological support. The centres are staffed by cancer specialists and it is hoped that Maggie’s centres will be at all 60 cancer centres in the UK.
She distributed a leaflet which explained in detail the services provided her centre.
Debra thanked Sinead for her enlightening presentation and thanked Maggie’s for allowing us to use their centre for this meeting.
Debra thanked everyone for attending and said that the next meeting is likely to be held in Birmingham on 7th September.