EGFR Positive UK Update

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March 2022

Hi <<First Name>>,

The winters are always a bit grey and quiet but despite this we have been still beavering away on your behalf.

In this quarter’s newsletter we will share with you the new trustee structure of the charity. Some of the continued work we are doing with the various medical bodies and the progress we are making. Below there are some links of interesting articles and together with the great news that we are now registered with JustGiving.

EGFR Positive UK is run solely by volunteers. If you would like to offer your feedback or get more involved please contact us here.

Follow us on our Facebook charity page or join our Facebook Group where our community regularly share information and first-hand experiences of living with EGFR mutation positive lung cancer.

A tribute to Jenny, our Founder and Chair

Jenny was diagnosed with Stage 4 EGFR+ lung cancer in February 2018. Like so many she had never smoked and lived a very healthy life.

At the time, having previously been a successful TV producer and then having spent time bringing up her children, she was training to become a psychoanalyst. She had to stop, regrettably, as she was unable to offer patients an open ended commitment. But this meant that she had time to put into understanding more about the EGFR Positive mutation and how best to treat and live with it.

In seeking to better understand her treatment options, and how best to look after herself Jenny, and Kathy Beattie, discovered that there was no UK equivalent of the US EGFR Resister...

Read more here.

Meet our newly appointed Chair: Angela Terry

A bit about me. I was diagnosed from a chest x-ray taken following a minor skiing accident in January 2019. Like many of us I was asymptomatic and an active, fit, never smoker. All a huge shock but here we are 3 years later and I am still here, still asymptomatic.

In these 3 years in addition to attempting to learn to play golf (which I have ditched!) I have been able to celebrate some huge family milestones: my first Grandchild born, my son married and this year our 45^thwedding anniversary. We were indeed teenage sweethearts!

Read more here.

Survey snapshot by Debs Littell

Overall, we had just under 50% of our Facebook members participate in the survey most of which are patients. This was a great result.

From the data gathered, it may still surprise some of you to understand that 59% of the responders were NEVER smokers and a further 26% had given up over 10 years prior to their diagnosis so that’s a whopping 86% that are classified as non-smokers. This is why lung cancer in particular EGFR+ is not a smoker’s disease and we will continue to dispel this myth.

Diagnosis is a very difficult time for us all and I was particularly surprised to see that from the group surveyed only 25% sought any counselling help.

Read more here

Congratulations and thank you to this pair of super fundraisers!

Despite not being a runner nor a gym-goer, Nicole was determined to complete the David Goggin’s challenge and run 4 miles every 4 hours for 48 hours.

With grit and determination, she and her husband Sean completed their challenge on 5th March 2022. It was gruelling from start to finish but the pain of their last year pushed Nicole through and the thought of raising money and helping another family faced with the horrendous news that a loved one is terminally ill, was enough to drive her to the finish.

Nicole wanted to highlight the circumstances of her dad’s case which illustrate why our early diagnosis campaign is so important to saving lives in the future.

Read more here

Going on behind the scenes:

Getting sorted

So much has been achieved in the last year: becoming a charity, creating and launching the hugely successful Early Diagnosis: See Through the Symptoms advertising campaign, representing the patient’s voice in a wide variety of settings, continuing to increase our position as the group to include in all things EGFR, to name but a few.

We have sadly also experienced a 50% change in our Board of Trustees. The emphasis in this first quarter has of necessity been to re-group and re-build as we plan the focus and activity for this year. Thank you to all our members for your unwavering support of us and each other. This is the essence of our group and you will be seeing our plans unfold over the next weeks.

Read more here

Research Roundup – did you see…..

Updates in the Treatment of EGFR Mutant Advanced-Stage NSCLC. Read more.
FDA Grants Breakthrough Therapy Status to Patritumab Deruxtecan for EGFR+ Metastatic NSCLC. Read more.
Treating disease progression with osimertinib in EGFR-mutated non-small-cell lung cancer: novel targeted agents and combination strategies. Read more.
MEK or ERK inhibition effectively abrogates emergence of acquired osimertinib resistance in the treatment of EGFR-mutant lung cancers. Read more.