Members forum overview
On the 15th Oct 2022 we were thrilled to hold our first in-person Member’s Forum at Bart’s Maggie Centre in London. It was attended by 45 members, and we had a very successful day. A huge thank you to Riyaz Shah and Martin Forster for their informative and interesting clinical presentations. Jane Woods took us to a reflective place as we considered how to ‘live in the moment’ and of course, there was time for all of us to chat and connect in both the breaks and a session in which we shared our experiences of EGFR + lung cancer.
Thank you to everyone who came along and generously shared their thoughts and experiences. Together we created a day that left us all with a greater understanding of our condition, aware of potential future developments and the importance of this group in supporting each other as we follow our personal pathway. As one person said to me as she left ‘I have found a place where I belong’.
Riyaz Shah told us about EGFR and how it effects the cells. Here are some notes from that session.
EGFR+ Lung Cancer : Current State and Future Prospects : Dr Riyaz Shah
Dr. Shah a medical oncologist provided a great overview session covering, disease background, diagnosis and treatment options.
Disease
Riyaz Shah
EGFR + is seen in c. 10% of UK lung cancer patients and is the most common mutation in non-smokers, the mutation means that the EGFR gene is permanently switched on, the role of TKIs (like Osimertinib, Afatnib etc) is to switch this off.
Diagnosis
Symptoms can be vague, so currently it can take time for a diagnosis
Screening : in lung cancer unlike other cancers this is limited & focuses on older ex/current smokers and is something we need to change
Role of the MDT Meeting
The MDT (Multi Disciplinary Team) meeting is a key one which occurs weekly, the outcomes of which are measured and published, it is made up of a wide range of specialists.
Every newly diagnosed patients case goes to this meeting to be discussed & determine the most appropriate treatment.
When a patient has progression their case goes back here to again be discussed & decide the most appropriate treatment.
Key point: Your oncologist does not decide your treatment by themselves, but rather it is discussed & agreed upon with a wide range of specialists to ensure that it is the most appropriate as follows:
Pathologist – they understand the mutations
Chest physician
Radiologist
Medical oncologist – there may be yours & others
Clinical oncologist – eg with specific expertise in radiotherapy etc
LCNS – Lung Cancer Nurse Specialist, often your main point of contact
Nuclear medicine
Palliative care
The MDT will look at the type of cancer, staging & take into account the individual patient to decide on treatment.
Treatments
Surgery – for early stage
Radiotherapy – often as support for the below
TKI’s
Chemotherapy
Immunotherapy
TKIs
Osimertinib ( a 3rd generation TKI) is widely used. It has good brain penetration and is effective against a range of mutations.
Exon 20 – a less common mutation
Mobocertinib has just been approved for this mutation, which is good as Osimertinib is not always effective
Post Osimertinib
Typically, the cancer will eventually become resistant to Osimertinib, the reasons for this are very complex.
Currently in the UK there are no licensed TKI’s following Osimertinib, there are however trials ongoing featuring Amivatinab & Lazertinib
Chemotherapy
Dr Shah noted that whilst a lot of people would not think favourably at the thought of chemotherapy EGFR+ is actually incredibly chemo sensitive and hence chemotherapy can produce good results.
Immunotherapy
Unlike is other cancers immunotherapy by itself appears to be largely ineffective in EGFR+, however there is evidence that when combined with chemotherapy it may be more effective, eg IMPOWER 150.
A question was asked about PDL1 (high levels of which are often deemed an indicator of immunotherapy success), Dr Shah commented that there is little evidence of differences in response rates based on PDL1 levels.
Brain Surveillance
As lung cancer can often metastasise to the brain Dr Shah stressed that this is important to monitor this and whilst patients may not want to know they have a brain met (it could mean surrendering your driving license) the earlier it is known about the more effectively it can be treated.
His recommendation was to get a base line position ie at diagnosis and for it to be monitored regularly, this practice appears to vary widely across trusts, but it is important to advocate for yourself. A small met picked up early can be a lot more treatable that a large one/multiple mets that may only present via physicals symptoms at which point the treatment options may be fewer.
Osimertinib & Chemotherapy?
It was pointed out that in the US standard practice is to continue giving the patient Osimertinib even if they have moved on to chemotherapy and it was questioned whether the UK would follow.
Dr Shah noted that there is an ongoing trial in the UK looking at this however the results will not be available for c.2-3yrs at best
NGS Testing – Current State and Future Prospects. Molecular Profiling - by Martin Forster -Associate Professor and Consultant in Medical Oncology . UCL Cancer Institute / UCLH
Martin talked to us about Next Generation Sequencing. This is a complicated topic and he took us through how we first need to profile the cancer and this has been done in a number of ways.
IHC This is quick and is looking for proteins but only gives us a very high level of information
FISH This looks for cell structural changes and can take between 5-7 days
RT-PCR This is a search for specific attributes but only looks for the ones that you request and takes around 10 days.
NGS NGS now provides us with the ability to look for a large number of other variables with more accuracy providing a much richer picture. However, it does take a few weeks to do.
There is also the next level of sequencing such as Guardent which is also genomic liquid biopsy profiling but provides a large amount of information some of which have not currently been addressed with treatment plans.
Martin went on to discuss the benefits of each test and how a quick test can get you started and point you in the right direction to enable you to do slower more detailed testing such NGS. Especially in the first diagnosis.