Hi all. I’m almost at four years now after being diagnosed with Stage 4 NSLC and spine mets in January 2019. Which is brilliant and every day I think how lucky I am! I started off with pemetrexed, carboplatin and pembrolizumab, then moved to maintenance pemetrexed and pembrolizumab, then pembrolizumab only at six weekly intervals during Covid. I’ve been on it ever since (private health insurance).
It’s worked really well. So well that the cancer in my spine and lymph nodes has gone … and my 8.8mm tumour in my left lung has shrunk to a 3.2cm low-grade cancer. I’m now being discussed as a candidate for radiotherapy to try to get rid of the last blighter once and for all. But because I was one of the first to get my regime of treatment - in the first week I think after it was approved by NICE for the NHS - there isn’t anything out there in scientific papers about having radiotherapy post immunotherapy. The team I have at The Marsden is excellent and they’ve done a full risk evaluation and the advice is to go for it.
But …
I’m a bit scared and, to be honest, a bit nervous/superstitious about interrupting my run of good fortune. Going for the cure is highly tempting but … what if it goes wrong? But then, say the immunotherapy stops working and I regret not going with the radiotherapy while I had the chance!
I’m just casting out in the hope that somebody on here might have had radiotherapy post immuno and reassure me that ‘it’s fine’ or even maybe ‘don’t do it!’ General experiences/side effects of radiotherapy too because I’ve never had it before.
Any input or advice appreciated. Questions to ask the consultant etc
Thank you all.
Written by
Ellejayb
To view profiles and participate in discussions please or .
8.8cm and I thought mine was big at 7.8. Luckily I was okay for surgery.
I've not had any of the treatment you mention, but if I was in your shoes, I'd go with what the team are suggesting. They know your history and what treatment you've had, so are in the best place to advise you. I'm sure you had the same thoughts pre-immuno treatment, given its so recent an option. Is asking for a second opinion something you've considered?
It's certainly a big and difficult choice, good luck whichever option you choose.
Thank you - that’s sensible and makes me feel bolder. My team are brilliant and I trust their advice totally. They won’t want to mess up and they won’t mess up! It’s just my nervousness getting in the way - which is different altogether to the feeling I had when I started treatment. I was just desperate then for any glint of hope. Have a good day and thank you again.
Congratulations on your triumphs so far it all sounds very positive. I thought it might help if I explain my path with this as there are similarities (I too am being treated at the Marsden by a neurologist and an oncologist who have been exceptional).
I was diagnosed with Stage 4 NSCL in 2020 this manifested as brain metastases which were surgically removed. The primary is in my lung which is currently not active. Following surgery I received CyberKnife radio surgery to 12 metastases which was successful. This was followed by carboplatin, pemetrexed and pembrolizumab for 3 cycles. Following this combined treatment I showed ongoing positive response and there was no further activity in my brain or lung. So for me the chemotherapy and radiotherapy combination worked.
However, in August there was new activity at one of the sites of previously treated tumour. I have received another round of CyberKnife and am going to have cycle 3 of 4 cycles of chemotherapy (carboplatin, pemetrexed, bevacizumab)the troublesome area is responding to this approach and there is no further growth. The plan is to continue on pemetrexed after cycle 4. My consultants have said that if my lung became active they would use targeted radiotherapy to treat it.
For me scientifically the combination targeting the tumour directly with radiotherapy and then using chemotherapy to treat the rest of my system makes sense. I haven’t found any contraindications documented for radiotherapy and immunotherapy but did discuss with my consultants and their view was that both treatments support each other but don’t interact with each other. The MDT supported this approach. So in short I have been ok with immunotherapy and radiotherapy! The Side effects from the radiotherapy were minimal. I hope this is helpful it is such a scary step 🤞
Thank you Draigo for this. I did reply in detail earlier but I think I forgot to press the post button. I took it on board. I am very grateful and it’s strongly motivated me to let go of my trusted, solid, long term boyfriend (immuno) and take on this new exciting unknown boyfriend (called radio) who brings with him the chance of all my dreams come true. (Well it is panto season.)
Your cancer journey is encouraging for many others and we hope you continue to do well. It sounds like your oncology team have been very thorough in their approach to treating you and they are best placed to advise you on what they recommend.
It is understandable a concern for you, having a new treatment, especially as you have been doing well; but am sure the oncologist would not have recommended it, if there was not going to be of some benefit for you.
If there is anything else you would like to discuss you can email ask the nurse at lungcancerhelp@roycastle.org or call our free phone nurse led helpline number on 0800 358 7200 Monday to Thursday 0900-1700 and Friday 0900-1600
Hi Ellejayb - I was diagnosed with Stage IV NSCLC with brain and adrenal mets Oct 2018 - I had SRS (like cyberknife) to brain mets, which was successful, Nov 18 and started Pembrolizumab only that same month. Like you I saw good results and in 2019 my consultant put me forward for radiotherapy (SABR - 5 days treatment) this I had successfully in 2019. I then continued with Pembrolizumab till the 2 year treatment ended in November 2020. Unfortunately brain mets returned so I was treated with SRS again in February 2021.
Both the radiotherapy treatments I have had are very high dose and precisely targeted so hence reduced timescale, 5 sessions for lung and 1 each time for brain. The planning appointments took longer! I had to take Dexamethasone for a period before, during and after SRS which do give me side effects but soon wore off after finishing and also hair loss at the areas targeted, With SABR I had extreme tiredness for some time but nothing else.
I consider myself extremely fortunate to have responded so well to Pembrolizumab and been able to have the SABR to the lung. Currently NED and on no treatment, I was moved to annual scans (which is scary!) since May this year.
My initial prognosis was so poor and Pembrolizumab was very new for lung cancer when I started so have been fortunate.
What an uplifting and reassuring story for me. Thank you so much for taking the time to write this. All my worries and doubts of 24 hours ago have gone. I’m now even starting to think ‘bring it on’! You have been through a lot and you deserve your successful outcome. Long may it last. Thank you again.
Congratulations on your experiences so far - gives hope to so many. Since my diagnosis in Jan 2011, treatments have changed so much - my 7cm tumour was removed by open surgery but back then there were only targeted treatment if you were EGFR+ which I wasn't, immunotherapy didn't exist, all surgery was open, and radiotherapy was quite a blunt instrument. The immense progress with SABR, different types and regimes of radiotherapy, introduction of various immunotherapy agents and more targets identified and treatments on offer have really changed the landscape. The other major change since I became involved in lung cancer research at the end of 2013 is even until a few years ago, the more 'traditional' treatments were offered first - saving the more encouraging/novel treatments until later then clinical trials tried out doing the opposite so now more and more the most appropriate treatment is offered first then referring to chemotherapy/radiotherapy later.
However things change all the time and the Royal Marsden is one of the Trusts that is very active in clinical trials, research and knowledge - and their oncologists are on many of the committees and groups I'm on in the UK and Europe and they widely engage with international research (USA, Asia and beyond) too. Like others, I'd be tempted to go with their suggestions - they were instrumental in changing radiotherapy schedules and changing the doses and trying to protect organs so they're very well respected in their field.
All I'd add is that so many people I've met who thought only one form of treatment existed or they feared they'd run out of road if something didn't work were often surprised when if that did happen, another treatment or several had come along in the meantime for them to try. Never give up - good luck whatever you decide.
Thank you Janette. You are very knowledgeable and have been around in lung cancer for a long time - both as a patient and as a researcher. What you say makes absolute sense. I will never ever give up by the way, I just didn’t want to take a wrong turn. From all the replies I’ve received, I now absolutely know it’s the right thing to do! Thank you.
Take the radiotherapy. It CAN work little miracles. All recommendations are based on averages and averages are not applicable to all. I know nothing is guaranteed, but my radiotherapy produced much better results than expected and were never considered originally. What have you got to lose? I only received palliative radiotherapy but you have been offered curative radiotherapy. Grab it with both hands.
I recently had concurrent radio and chemo and it got rid of my primary lung tumor and the metastasis in my shoulder. I friend of mine is currently on a similar treatment, but with combined immunotherapy and radio as part of a clinical trial. It’s been incredibly successful for her too… so I really wouldn’t worry. All of the data suggests it’s a really effective mode of treatment!!
Hi Elle,Thanks for the question and well done on keeping up the fight! My dad's treatment sounds like a similar plan to yours but he's a few steps behind. He's about to drop to just pemetrexed and pembromlizumab. I was also wondering what radiotherapy entails and the effectiveness of it. Hope your treatment goes well! All the best x
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
chemo & immunotherapy 
Coronavirus...advice for a family member
Treatment withdrawn, do we have any more options? 
Good News and Bad News 
