Key Messages

This was my first time at this conference which is held in Lisbon every 2 years and focuses entirely on Advanced Breast Cancer.  Jo had been to the previous ABC4 in 2018.  We attended this conference & met other patient advocates from across the world.

It’s an amazing conference with a very strong patient focus. I was lucky enough to meet experienced and knowledgeable patient advocates from Europe, Asia, Africa, the Middle East, the USA, Canada, Australia – and although each country may be in a different place when it comes to cancer research and care, we patients all seemed to face the same issues:

• Access to new drugs and trials
• Varying treatment lines
• A feeling of ‘being written off’
• Dealing with drug side effects
• The psychological challenges of living with a ‘terminal’ disease

The three days I attended were fairly intensive, presentation after presentation, but I tried to capture the key messages from each talk and have summarised them here.

The keynote speaker at the opening session was a patient living with ABC, Clare Myerson, which sent a clear message that this conference is about the patients as much as the science. One quote I took from her talk was ‘a good doctor treats the disease, and a great doctor treats the patient living with the disease.’ So what did I learn from the patient advocacy sessions – here are the key messages from each session I attended:

The do’s and don’ts of complementary medicine
• Oral drugs interact with herbs more than IV drugs
• There are a considerable number of interactions common supplements and cancer drugs
• The website cam-cancer.org has information about complementary meds
• There isn’t enough evidence to say whether complementary medicine helps with side effects – there is still a case to prove

Having difficult conversations at the end of life
• MD Anderson changed the name of their unit from palliative to supportive care in 2010 (I think) and had very positive results. Far more people were referred
• There is some evidence that patient outcomes are better if there is shared decision making with the patient
• Need to have comms guidelines for doctors
• There are resources out there to help navigate difficult end of life conversations – canceraustralia.gov.au/sites/default/files/publications/findingthewordstostartaconversationwhenyourcancerhasprogressed
• Get your shit list done! Eg accounts, passwords, contact list etc
• The circle of care gets smaller towards the end and friends can feel displaced

And then there was a bunch of more scientific talks, updating us on the latest research on different ABC topics. Each topic had a number of speakers.

How to define and communicate meaningful clinical benefit
• What are the optimal end points for MBC trials? The gold standard is OS (eg time to death), but only 14% of trials use this. Researchers focus on PFS (Progression Free Survival) to enhance their chances of approval
• Need to focus more of PFS and also QoL as measures, plus also use a targeted biomarker driven approach also, to see more meaningful endpoints
• PROMs are important, but in the metastatic setting survival in itself is important
• Estimating survival times – discuss this when the patient has less than 1 year to live. Use best case, typical case and worst case scenarios with patients

Applying biology knowledge
• We want multigene testing in a single assay
• A research group found that there were 41 gene alterations in MBC
• De novo versus recurrent MBC: by recurrent we mean 3 months later or more
• De novo has longer survival and 1 in 4 in the US are dx as de novo. The rate is increasing
• ½ new HER2 patients are dx de novo
• When they whole genome sequenced 442 patients, 42% had targetable biomarkers
• Are we missing an opportunity with CDK4/6 in Her2 and TNBC?

Triple Negative latest news
• Lots of work happening in this area
• On the Olympiad trial parp inhibitors have had a good response, and patients who had not had chemo did better
• If there is resistance to Parp inhibitors, treat with platinum salts(?)
• The Violette trial showed that ATR inhibition can help
• 41% of patients have the pdl1 mutation and could be treated with an immunotherapy such as atezolizumab
• A positive message to finish with – not all TNBC patients have a poor prognosis and better stratification of patients is needed

Managing side effects
• This section of the conference covered side effects of treatment, including pain management, sexual issues and fatigue
• Fatigue is underrecognised and under treated
• Data was collected in CDK4/6 trials and almost 50% of patients reported fatigue
• Clinicians need to ask their patients about this issue

Luminal ABC latest news
• CDK4/6 plus endocrine therapy (ET) is now the standard of care
• CDK4/6, MTor and PIK3 mutations common
• The choice of ET is important, depending how endocrine sensitive the cancer is
• Use Alpelisib for PIK3 HR+ MBC

ER+ News (Peter Schmid – Barts)
• SERCAs are a new class of drugs for selective ER+ and a big area of interest by pharma – lots of phase 1 trials
• Which drug is best for the PIK3 pathway – Everolimus or another?
• Another area of interest is looking at CDK4/6 resistance
• Immunotherapy – positive about its future with ER+
• ADCs (anti drug conjugates) – Sacituzumab had a 31% response rate

Specific sites of metastases
• CNS disease – Nancy Lim believes we should do routine surveillance on high risk patients
• Not enough research – of 1474 trials only 2.6% allowed CNS disease
• Her2 patients – median survival is 3 years if under 60 and with good performance status, but cant keep radiating patients – we need more treatments
• Her2Climb good results; ADCs can penetrate some BBB (blood brain barrier); Tucatinib less toxic than lap or Neratininb, and some patients had prior TKI treatment
• Leptomeningeal disease- tried intrathecal Herceptin in 10 patients and median survival stretched from 3 – 10 months

Her2+ latest news
• Her2 survival has doubled from 2-4 years in the past few years
• We should include brain mets on trials, and take more biopsies
• CDK4/6 may help (Patricia, Patina, MonarchHER trials)
• Need more treatments for HER2 Low
• ADCs can be improved – DS8201 has a very powerful payload, a 60% response rate in patients with an average of 7 lines treatment
• TKIs being widely used, Neratinib , Pyrotinib, Poziotinib
• Margetuximab in Phase 3 trial – had a RR of 18-20%
• Sophia Phase 3 – if patients carried the CD16A gene they did better
• Tucatinib less toxic and ORR of 54%
• ZW25 had 33% RR
• DS 8201 an exciting drug – median of 22 months and 60% RR
• SYD985 very similar

Her2 Biology
• The amount of Her2 matters, and important to recheck tumours with every progression

Liquid biopsies
• Blood samples have a short shelf life – can’t sit on a runway or will lose all of the DNA
• Paul Mainwaring tested 4 tests, and they all had different results so not yet ready for use
• ASCO not recommending yet and limited evidence in advanced cancer
• They need to be standardised

The final talk I saw was from Fran Boyle and was all about the language healthcare professionals use with cancer patients. Doctors have to become bilingual – using both medical and patients’ language. Using words like aggressive, mutant, failed, random, late stage might be unintentionally hurtful for patients to hear. Doctors need to become much better at communicating and be skilled facilitators. A big ask on top of their increasing workloads, but very important.

Lastly, it was my Birthday whilst at the conference so had a surprise birthday get together with other advocates, it was lovely to meet everyone and hope that we get to see each other at ABC6.

Lesley Stephen METUPUK advocate

Please watch the video then share and sign the Call To Action and make a commitment here https://www.abcglobalalliance.org/make-a-commitment/

Watch as real women with advanced breast cancer (ABC) tell their stories and shed light on the current gaps in ABC care.  This video was filmed with real patients over three days at the 2019 ESO-ESMO Advanced Breast Cancer Fifth International Consensus Conference (ABC5)

Spread the message