Confused

[Crafty57]

Hi . I wonder if anyone can help me. I was diagnosed with lung cancer a couple of weeks ago the mutation was PDL1. I received my first immunotherapy treatment yesterday. So far so good. I got a letter today from the consultant it states the cancer then EGFR/Alk/Ros 1 negative. Does anyone know what this means. TIA

Paula

[Vick78]

Hi

Egfr/alk/ros1 are other gene mutations that cause lung cancer. I am alk positive and waiting the results from the other gene mutation tests.

Hope that helps

Vickie

[Crafty57 in reply to Vick78]

Thank you for that, Vicky. It’s a different language you have to try and learn. So confusing at times. Wish you well for the future.

Paula

[Vick78 in reply to Crafty57]

Hi

Yes very confusing, I received a letter with these terms in back in March but only last week worked out the significance of it.

Vickie

[JanetteR57]

It is confusing but you don't have to know or understand the science. As others have said about mutations EGFR, ALK, ROS1 and others are mutations with targeted agents available now. At the time of my diagnosis in Jan 2011, the only test done was for EGFR and I was negative. I've read posts online where patients say 'I have no mutations' whereas cancer depends on cell mutations to be triggered' so what the clinicians should say is you do not have the mutations for which there are targeted agents available as treatments. There are major trials underway (including UK Lung matrix) that have identified many many more mutations within cells and proved that non small cell lung cancer in particular is much more complex than ever imagined years ago. It doesn't mean if you don't have them that there are no treatments but it does mean that if you do, they won't just give the previous standard chemotherapy/radiotherapy agents, but will tailor the treatment to your specific characteristics of your cancer. PDL1 refers to a protein - protein death ligand 1 - and patients usually have to exceed a certain threshold to indicate whether they may be responsive to immunotherapy where the treatment is designed to trigger the body's own immune response to attack the cancer cells. However due to covid 19, the usual thresholds have been temporarily amended so that people are having access to immunotherapy (different agents) rather than having more frequent visits to hospital for chemotherapy. Not everyone responds to immunotherapy and not everyone can have it - exclusions include auto immune conditions like lupus, crohns, arthritis, and some have bad side effects once they start but for some, it has proved a huge difference. The form clinics complete does not have a box for the different types whether a biomarker, mutation, protein signal so it will be written against the 'mutation' box. unsure if this helps or confuses but do remember if you don't understand anything a clinician is saying to you, you are allowed to ask questions and for them to explain it in terms you might understand. There is more information available on Roy Castle lung cancer foundation website that outlines targeted therapies and immunotherapy. good luck.

[RoyCastleHelpline Partner Ask the Nurse Roy Castle]

Dear Paula

Sorry to hear you have lung cancer and hope you continue to feel well on your Immunotherapy treatment.

There have been good responses from your post and JanetteR57 has detailed the information on the PDL1 well.

This link provides some information on the different cell mutations:

roycastle.org/about-lung-ca...

This link is to our leaflet on Immunotherapies: roycastle.org/app/uploads/2...

If there is anything you would like to discuss you can either email us at [e-mail] or call our freephone nurse led helpline number on 0800 358 7200

All the best

The Roy Castle Support Team

[Crafty57]

Thank you everyone. Every time I receive a letter there’s more news on it. Paula

[JanetteR57]

The information on Roy Castle lung cancer website can help you make sense of it - as it's written in plain English and answers frequently asked questions and suggests questions you may want ot ask your clinician. there's nothing to be gained by pretending to know and then being left with questions to answer - better these are answered by your own clinical team as they will have your medical information and can relate to your personal characteristics rather than generic information we may offer on here. good luck.

[Crafty57]

Thank you Janette. My lung cancer nurse explained it to me xx