It has spread to 2 lymph nodes, they say inoperable as it is close to heart and other structures.
I am due to receive combined chemoradiotherapy in 2 weeks time for about 6 weeks.
After that I am hoping the 3.4cm lesion would have shrunk away enough to operate on so I’ve asked for a recheck of that as a 2nd opinion.
My checks to see if I can have immunotherapy have sadly come back negative, I cannot have it. I am also told I cannot have targeted therapy but I do not know why, that questions has not really been answered.
There does not seem to be anything else I can have other than scans to see where it spreads and then more chemo……more scans more chemo ….
if after my treatment surgery is still not an option and because I can’t have immunotherapy what are my chances, what has happened to others in the same boat as me.
Thanks
Sylv
Written by
Schnozzle
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Sorry to hear about your situation and understandably a distressing and stressful time for you and your loved ones.
I hope you keep well and have a good response to the chemoradiotherapy treatment and a second opinion may offer the same or different future treatment.
Immunotherapy and targeted therapies only work on specific cell mutations/protein's known as biomarkers of the cancer cells. If these are not present from the biopsy sample then they would not be considered as a treatment option as they would not have any effect.
Any treatment cycle is usually followed up with check CT scans, routine surveillance, and monitoring continues up to 10 years. If there is any change during this time, other treatment options may be looked at.
Thankfully, there are continuous advances of treatment options from clinical trials for lung cancer that were not here in the past ten years.
Our support services include one to one support by phone or online support groups, you can view and register for these through this link: roycastle.org/help-and-supp...
If you would like a paper copy of any of our information booklets posted out to you, please email us at info@roycastle.org
I hope you hear from others in the forum, and you may wish to consider clinical trial options, your oncologist can advise you on these or you can source them from the following websites:
You are welcome to contact us if you would like to discuss anything, you can call our ask the nurses on 0800 358 7200 Monday to Thursday 0900-1700 and Friday 0900-1600, alternatively you can email us at lungcancerhelp@roycastle.org
Thank you for writing back. I’m not so panick stricken now. After the first call, some 30 mins later I got a second saying I would be put in a targeted therapy Osimertinib. They had missed a result off at first conclusion but thankfully then spotted it after the first call. So I’ve got my head in a better place with this news and your response. Thank you again.
It’s worth asking what mutation you have. Some people who take osimertinib have the EGFR mutation. There is an EGFR mutation support group run by patients on facebook. There is a U.K. and a Worldwide group. It might be worth joining them to get more information. The Roy Castle targeted therapy booklet is also good. I have a different mutation but get support from a facebook group x
Hi I have this confirmation that it is Exon 21 L858R. I have looked this up and it is a fairly common one affecting Asian women and predominantly never smokers.
I really cannot assign any of that to me, I did smoke, I gave up about 17 years ago and I’ve no ancestors in Asia, my bloodline goes back to the 1200’s.
On the plus side there are many Asian groups affected by this and India and China seem to be very active in finding vaccines and treatments.
Thank you for the links too I have joined the uk one.
You sound as though you are researching well. I wish you all the best with your treatment. Hope you find the U.K. group useful. I have an ALK mutation and use both the U.K. and Worldwide groups. I find the U.K. group good for treatment approved by NICE and seeing what’s available here and the other group for giving a wider picture. You might find more people with 3b in the larger group. Although treatments might vary in different parts of the world x
I have NSCLC I had chemo radiation for 7 1/2 weeks and I’ve been stable ever since, I tried immunotherapy, but it caused me too many issues. I was diagnosed in December 2021
Sorry to read of your disappointment at being ineligible for immunotherapy but note your later post that you can have targeted therapy. Lung cancer is not a single condition but many different types and within those, patients have different mutations and something called biomarkers - which for immunotherapy is related to a specific protein signal. Treatments for lung cancer are very personalised dependent on the clinical factors and clinical evidence gathered from the various investigations including biopsy for pathology as treatments vary so much. It's one of the reasons why so many tests are done before treatment starts which can often be a lengthy and stressful time for patients and their relatives.
Although immunotherapy and targeted therapy get all the headlines as they're relatively recent treatments, many patients are treated who do not qualify clinically for them. The majority of UK patients are detected when their lung cancer is inoperable but many respond to the other treatment types.
Treatment for lung cancer can include surgery (mostly keyhole now), chemotherapy (different agents), radiotherapy (different doses, types and intentions), immunotherapy and targeted agents. Most patients end up on a combination of treatments rather than single type of treatment - even surgical patients may be offered some treatment before surgery (Neo-adjuvant) or after surgery (adjuvant) but again depends on the clinical evidence/specific type. I was diagnosed in January 2011 and since then all the treatments and the ways they're delivered, the doses/frequencies etc have all changed - some are now being trialled to see if they could be delivered under the skin (subcutaneous) rather than infusion needing to be in hospital - some chemotherapy/targeted agents may be delivered as a tabled (oral) rather than drip, some chemotherapy can be delivered at home rather than hospital, etc etc. The research into lung cancer around the world has exploded in the last decade or so as there are so many people who develop it. Many of the treatment changes/trials are to reduce the impact the treatments have on the body - to improve quality of life/reduce side effects but not everyone experiences these.
Never give up - when I started being involved in lung cancer research in 2013 there were far fewer options but even so, for those at the time with EGFR who could access trials found that if one type of treatment stopped working, another had been approved by the time that happened. Over that time, targeted agents have been introduced/approved for many different mutations including KRAS, ALK+, and others and immunotherapy (different agents) introduced..... researchers and clinicians working hard all the time to improve things.
chemotherapy is also not all the same - different agents, timings, etc are used - much more information in detail is available on the Roy Castle lung cancer foundation website under the patient information tab - with detailed booklets answering many questions you may have. hope you can be a little reassured that this doesn't amount to 'nothing can be done' - there are many treatments and hopefully your clinical team will explain what is available for you and what might happen if your cancer doesn't respond positively to it. good luck.
Thank you so much for your response, I really do appreciate it. I am now on GemCarbo for 4 cycles, radiotherapy is on hold because the beams would have compromised my oesophageal, wind pipe and a chunk of healthy lung. So the plan is to shrink it, scan and see what is next.
I had hope the original plan of combined chemo and radio therapy may have led to surgery if it could shrink enough using VATs. It might be possible but I am taking myself down the route of not given the tricky place mine seems to be and it’s very thin and long apparently.
I have been reading recently released official reports about all the new drugs being available and am hopeful. Now I am in treatment I am less stressed, it’s early days I’ve had half a cycle so far and pleased I’ve no nausea but I’ve got pills in case.
Thank you once again and hope your journey is stable forever.
I’m very sorry to hear your situation. I’m about to start Proton radiation therapy, which is supposedly more pinpoint and more powerful to a tumor. May be worth exploring. Good luck.
I will be under Hull radiotherapy cancer treatment and they do have the Proton Beam machines. I will check I can have that if I am lucky enough for my tumour to shrink and I re qualify for radiotherapy.
My mind is blown away with the advancements being made and I feel ashamed I was not aware of much of the detail before it rose up in my life.
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Treatment withdrawn, do we have any more options? 
Immunotherapy
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Immunotherapy
