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News and Views

A round up of news and views impacting the lives of people affected by ALK-positive lung cancer
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Social Media Award Finalist

 

National recoginition for the ALL YOU NEED IS LUNGS campaign produced jointly by ALK Positive UK, EGFR Positive UK and Ruth Straus Foundation.

The campaign, which featured ALK-positive and EGFR-positive patients telling their own stories openly and honestly, was a finalist in the best charity campaign category.

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Lorlatinib Approved

 

Lorlatinib is a 3rd generation Tyrosine Kinase Inhibitor (TKI) used for the treatment of advanced ALK-positive lung cancer.

On 7 October 2025, it was approved by the National Institute for Health and Care Excellence (NICE) for newly diagnosed people in England and Wales.

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9-year Cancerversary

 

Nine years ago today (7 October), our Chair, Debra Montague, was diagnosed with ALK-positive lung cancer.

Read Debra's story and those of other people living with the condition.

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Patient Conference

 

Our 4th Patient Conference, attended by 190 people affected by ALK-positive lung cancer, both patients and carers, has just ended and we have received very positive feedback, including

"Thank you for a wonderful conference and a wonderful opportunity to meet other people in the same boat. This was very professionally organised and run and I was very impressed. This was my first attendance".

Videos of all sessions will shortly be on the website.

Chief Executive Officer Appointed

 

The charity is delighted to announce the appointment of Lynsey Conway as its Chief Executor Officer.  Lynsey brings 20 years experience in the lung cancer arena and her appointment is an important step in the development of the charity.

Lynsey said, " I am delighted to have joined this vibrant charity and hope that my experience and knowledge will contribute to its development".

Hardship Fund

 

1 in 4 of our members living with ALK-positive lung cancer report that they are experiencing significant financial hardship as a result of their diagnosis.

The charity is pleased to announce the launch of the Brenda Cobb Hardship Fund which is financed by Brenda's son, Callum.  In fact, within 2 days, we made the first grant.  Contact us, if you feel that you could do with some help.

Frequency of Head MRIs

 

3 in 5 ALK-positive patients are likely to develop brain metastases (tumours) within 3 years.  The charity considers that 6-monthly MRI scans should be carried out before symptoms occur, so that metastases can be treated when they are small and few in number.

Our Abstract calling for a national protocol has been selected for display at the United Kingdom Lung Cancer Coalition annual conference

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Questions to ask at Progression

 

Progression is when there are signs that the cancer is growing.  This marks a key event in a patient's lung cancer journey. 

The charity has prduced a leaflet that suggests some of the questions that patients might like to ask their oncologists at this time.

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ALK Positive Lung Cancer (UK) is committed to producing reliable, accurate and up-to-date content reflecting the best available research evidence and best clinical practice. We aim to provide unbiased information free from any commercial conflicts of interest.

ALK Positive Lung Cancer (UK) is a registered charity in England and Wales ((1181171) and Scotland (SC053692).  The registered office is at 1 Ethley Drive, Raglan, Monmouthshire, NP15 2FD.

The content of this website is for information only and should not be used for the diagnosis or treatment of medical conditions.  We are unable to offer specific medical advice and, if you are worried about any symptoms, you should consult your doctor.​​

Members of the closed Facebook Support Group exchange experiences and members are advised that they should not act on advice or recommendations of other patients and should act only on the advice provided by their healthcare providers. The chairty accepts no responsibility if patients act on the advice of other members.

No part of this publication may be reproduced or tansmitted in any form or by any means, electronically, mechanically or manually without permission in writing of ALK Positive Lung Cancer (UK).

Copyright © 2025 ALK Positive UK

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