my lovely mum, 77, has been diagnosed with stage 4 lung cancer last week. She is bizarrely well, except breathless and tiredness( the diagnosis has come as a deviating shock!)
She was due to start chemo and immunotherapy on 28/2.
we got a call yesterday to say tests had discovered a kras mutation plus 100% pr1. The oncologist presented 2 new potential treatments
1. See if there is a kras clinical trial available in Newcastle or manchester as there are none currently open in leeds
2. Targeted immunotherapy and no chemo yet
We may not even get the option of a trial but in case we do, I just wondered if anyone had any experience or insights into the above. It’s all quite confusing and I’m keen to try to make the best decision possible. I’m also mindful that diagnosis max tests etc have been going on since late Dec so we need to urgently get going on treatment. Any insights or tips are gratefully received! Thanks
Jill
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Jill75
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Welcome to the forum and sorry to hear about your Mum, this must be understandably very difficult and stressful for you all.
If they detect a specific mutation in lung cancer, sometimes there are better treatment options that target that specific mutation. I assume the 100% you mentioned is the PD-L1 marker which would indicate that the higher mutation, the better the outcome of the Immunotherapy treatment.
Clinical trials are designed, as you know, to try new treatments out along with observing any side effects. There would need to be more information on the clinical trial before deciding and your mum could ask for the patient information leaflet on the trial. This would detail everything involved, e.g the number of visits, what's involved, known side effects so far and the earlier the trial (stage e. 1 and 2 )the less side effects they know about, whereas a clinical trial stage 3 and 4 they have a bit more data on side effects. With your Mums permission, they may be able to email you a copy of the trial.
Some people do well on a trial and it can be a very personal decision for the person. Being fully informed about the trial can help make that choice.
It may be worth asking the oncologist what would provide the better outcome and quality of life for your Mum. It can be tricky treating two different mutations, and the KRAS mutation can be further divided into G12C G12D and G12V.
Sotorasib is approved for the KRAS mutation, however it is for previously treated KRAS G12C mutation, where your Mum has not had any treatment as yet, this is the link form the UK guidelines NICE (The National Institute for Health and Care Excellence) nice.org.uk/guidance/ta781
This could be why they are officering your Mum a trial looking at first line treatment for this mutation as there are none that are licensed as yet.
This link will take you to both our booklets on Immunotherapy and Targeted Therapy:
Thankfully there are now more treatment options for stage 4 lung cancer than there used to be and hope you hear from others in the forum who have similar mutation mix.
Your Mum is welcome to contact us if she would like to discuss anything on 0800 358 7200 Monday to Thursday 0900-1700 and Friday 0900-1600, alternatively you can email ask the nurse at lungcancerhelp@roycastle.org
It's always a shock and the start of the 'journey' as they call it, can be the most bewildering and scary as it's all so new. None of us know about cancer until it affects us and now there are so many different treatment approaches for lung cancer based on characteristics of the tumour, its mutations and protein level signals - none of which mean anything to us!
When I was diagnosed Ian January 2011, the only identified so called driver mutation known about was EGFR and I tested negative for that. However in recent years much more has been learnt from clinical trials and research and now there are several known mutations that have targeted treatments which include EGFR, ALK, ROS1 and KRAS.
The latter only had a treatment approved last year as previously it had been thought it couldn't be targeted as the others have been in the last 8-10 years or so.
I've been involved in cancer research since end of 2013 and had the privilege of meeting several survivors in different countries with some of these specific mutations. Like me, they were mostly never smokers, younger than 'more traditional' patients and often willing to travel for treatment. Many were fit and active previously and as you comment about your mum, appeared well. There are some specific groups for some of these specific patients - in the UK, EGFR+UK, ALK+UK, Ros1ders and then internationally a group called KRAS kickers so you may find more specific information on their website about trials/treatments.
Immunotherapy is a relatively recent treatment for lung cancer but more widely used since the pandemic and for many it has vastly improved their experience from the former chemotherapy or radiotherapy single treatment option. roycastle.org/app/uploads/2...
Most patients these days end up on a combination of treatments and if the first line treatment stops working, there are other options.
Clinical trials have enabled massive developments in lung cancer treatment options in recent years and they are usually delivered through centres where they're very experienced at handling clinical trials - sometimes they may involve additional visits or more close monitoring but do ask her clinician what it might entail whichever option she chooses.
thanks you SO much to everyone above who commented- really insightful. Well the decision Re a trial has been removed as we discovered there are none open to get right now. I wonder if there are any others in the Uk??
At this stage, are starting immunotherapy next week. Here’s hoping and praying she reacts well and it controls the cancer x
Immunotherapy has proved a real game changer to many who are eligible and can tolerate it. As previous replies have explained, treatments now are very personalised and more targeted which can make it seem as if it's taking longer to get onto active treatment but evidence shows that if the patient is on the most appropriate treatment for them rather than generic treatment, they tend to do better. There are different immunotherapy agents so hope she responds well.
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