Birmingham Forum - Knowledge, community and hope!
Thank you to everyone who came along to the Member's Forum in Birmingham in late April and contributed to an excellent day.
Shobhit Baijal increased our knowledge and understanding of our disease and gave us hope with his overview of existing and future treatments.
Richard Warren gave us the opportunity to hear a Caregiver's experience of EGFR+ lung cancer from diagnosis to 15 months after Jenny's death. A very important, moving and courageous session.
Tracey Coles shared her experience of the role of the CNS and the supportive care we should experience.
Following this there was time for us to gather in small groups to support, share and connect.
All of this combined with a great venue, yummy food and endless cake meant that the level of good feeling and community at the end of the day was exceptional.
Here is more detail of the individual sessions.
Dr Shobhit Baijal
Dr Shobhit Baijal provided a superbly clear overview of the nature of EGFR+, the specific and common variants, and the most frequent resistance mechanisms. He shared the profile of patients. And walked us through the history, generations and sequencing of treatment, with particular emphasis on the efficacy and low toxicity of Osimertinib.
He was particularly keen to emphasise the efficacy of lower dosages in that the drugs remain effective at lower dosages, but, more importantly, can keep being taken due to the reduced toxicity of lower dosages.
He also talked about the fact that treatments can continue to be used even when their effect diminished and made the comparison between new and used cars, where the latter still work to deliver benefits albeit not quite as well. He talked about the importance of targeted interventions such as radiotherapy.
He strongly advocated the importance of biopsies, either liquid or tissue and made the case for these being self-funded if otherwise unavailable, biopsies being indispensable in determining resistance mechanisms and targeting subsequent treatment.
Whilst acknowledging the unquestioned primacy of Osimertinib, he continued to extol the merits of chemotherapy, either in combination with immunotherapy (impower 150) or as a double treatment (carboplatin and pemetrexed), because both these treatments work, albeit with more demanding treatment methods and toxicities, and were, therefore, an important part of the treatment armoury in extending progress free survival.
He gave an insight into all the current next-generation treatment trials such as Blu 945 for the resistance mutation C797S, and what he described as ‘smart tech chemotherapy’ in the form of HER3 treatment currently being tested in the HERTHENA trials.
He reassured that the treatment available in the UK was comparable with anywhere in the world and that a good oncologist with a good relationship with the drug companies should be able to access the best available treatments for NHS patients.
Finally, he emphasised the importance of working with driven, ‘on it’ oncologists – a finer example of which he couldn’t have given us!
The lung cancer CNS role and understanding supportive and palliative care.
Tracey Cole gave a talk highlighting the important role CNSs play in cancer patient care. For example, they enable shared decision-making, help with the interpretation of information, help with symptom management and progression, and coordinate with GPs and palliative/supportive care teams to support care and reduce unplanned hospital admissions. They also play a vital role in advocating for you in MDT meetings and can tailor communication about your diagnosis and treatment according to your needs (for example, in terms of how much you want to know). Furthermore, research has shown that patients with a CNS are more likely to get access to treatment and have a more positive experience of care. NICE guidelines say that all lung cancer patients should have access to a CNS for advice and support, so if you’re not sure who your CNS is, ask your oncologist for information about how to contact them.
To understand your specific needs, CNSs can carry out holistic needs assessments, which identify your specific support needs (whether physical, emotional, spiritual, social or financial), so they can work out how best to meet them. These assessments can maximise your relationship with your CNS, so if you don’t think you’ve had one, ask for one today. They are available at any stage after diagnosis.
CNSs also coordinate with palliative and supportive care teams to support you. While people may associate palliative care with end of life care, supportive care is much broader and more positive than that. For example, supportive care teams focus on supporting those with incurable disease, many of whom will have a treatable condition with a long life ahead of them. So while end of life care may be one facet of supportive care, there is also a large focus on rehabilitation and survivorship issues (for example, managing treatment-related side effects and symptoms, or supporting psychological wellbeing). Importantly, patients who receive supportive care have been shown to have better outcomes, living longer and with a better quality of life. So accessing it can be really beneficial. Supportive care may be offered by your cancer centre or hospital, or through outpatient hubs, or community specialists. To find out how to access this, speak to your CNS, GP, practice nurse, or research team (if you’re in a clinical trial). They should be able to help you gain access to this important supportive resource.
Group Discussion on Living with EGFR positive lung cancer
Below are some of the topics that arose during the group discussions and I think you’ll agree that it is interest reading. During the course of the year we will endeavour through the FB page and presentations to answer issues raised.
1. What has helped you most since diagnosis?
Treatments e.g.Osimertinib, Cyberknife
Patient Portal
Love of family and friends
My CNS
The EGFR Facebook grou
Learning and understanding more about EGFR+ lung cancer
Getting more control over the side effects of treatment
2. What would you have found valuable but not available?
Inequity in wait times for scans and results/ blood test / ECG etc
Need to be felt ‘held’ – some ‘wishy-washy’ oncologists
Having more of this type of forum for coping and being able to talk amongst ourselves / other carers.
Availability of counselling
Contacting each other – buddy system
Knowing what to expect and what comes after this particular treatment
When is the time for additional help – eg complimentary therapies.
How to live on a 3 month cycle
Availability and getting second opinion.
3. What would help you right now?
Knowing more about developments on EGFR positive
Summary documents easily understood. Not too technical.
Peer group support on FB / social meeting in groups
What supplements can be taken / not taken
Living this golden period of our life – counselling / better communication skills at diagnosis.