Hi, I’m a 50 year old husband and father of 3 young children (10/8/6).
I’ve just been diagnosed with Metastatic adenocarcinoma of the lung and am starting palliative treatment of Carboplatin/Pemetrexed/Pembrolizumab therapy on Tuesday.
This all has come completely out of the blue to me, and I understand very little of what I might expect.
I’m aware that no two experiences are the same, but I would welcome hearing from anyone who has a similar diagnosis/treatment plan on their experience.
Many thanks in advance.
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Damonaldinho
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First.. I am so very sorry that you are having to even be on this site..... Just want to wish you best results ever.... Ps my much older than you husband is on triple therapy too. Today we have had a almost perfect day...... Sending you love
I am very sorry to hear this news and can understand your shock and fear. Can only imagine how hard it must be receiving such news when your children are so young too. I was diagnosed with metastatic adenocarcinoma in February 2016 having just turned 53. At that point pembrolizumab wasn’t available. I had radiotherapy for the mets in my spine followed by nine cycles of combined carboplatin and pemetrexed, which had a positive impact. Then had a year off treatment other than for continuing to receive denosumab injections to help protect my bones. I had regular CT scans, which picked up disease progression after almost a year and I had single fraction radiotherapy. Pembrolizumab had by then been approved for those with a PDL1 expression on their tumours, which I had, albeit at just at 5%. I started on that in December 2017 and have recently received my 52nd infusion. I have tolerated immunotherapy better than chemo and it has kept my cancer stable. Life isn’t the same but I still have a decent quality of life. I do what I can to help myself by eating healthily (well with a few treats!), drinking lots of water (but still enjoying a few glasses of wine from time to time!) and exercising within my limitations. I regularly go to the gym, attend a Hospice exercise group for those with fatigue and breathlessness and several Pilates classes. I find the mindfulness aspect of the latter as beneficial as the physical side. I think we feel better when we take action to try and help ourselves as it gives us back a little control. Anyway despite a pretty dire prognosis back in 2016 I am still here making memories with family and friends, which I hope gives you a little hope and encouragement too.
You will find this site a very good place for advice and support.
Wishing you well with your treatment and sending my very best wishes and positive thoughts. 😊
Thank you so much Manninmaid, that gives me some real cause for optimism. I’m already learning that I have made the cardinal sin of googling my diagnosis and receiving lots of older prognosis information. There is clearly a bit more cause for hope, albeit with some challenges.
Glad you are still here and making memories. That is definitely my aim too.
Should have added the suggestion that you avoid googling. The stats on which the prognosis information is determined are of course very out of date and and there are many people living well with stage 4 lung cancer. Better to stick to RCLCF and MacMillan as sources of reliable information. There are certainly challenges along the way but there is must definitely hope. x
Hi Manninmaid hope you are still doing well? Can I ask you said you had had your 52nd dose of immunotherapy- I read it can only be given for 2 years has yours been given for longer? Thanks in advance
Hello Sharkey1234567. I am still doing ok thank you and hope you are ok too. The pembrolizumab immunotherapy I receive is licensed for use, where funding is available, until disease progression or unacceptable toxicity. I received it for two years funded by the NHS and have continued treatment funded by BUPA, which works to the licensing agreement. Two years is the period for which the pharmaceutical company sells it to the NHS at a reduced cost. Since I started treatment I have signed two petitions seeking to extend the period of treatment on the NHS, but neither have resulted in a change. Having said that, the optimum period for treatment has not yet been established and I understand that this is unlikely to be established for another couple of years or so yet. So it may be that I am having treatment unnecessarily and after two years my cancer would have remained stable for this period of time anyway. Hope this explanation is helpful. Wishing you well. x
It’s ok to be scared. I was scared last week but I’ve calmed down a bit now. It’s all the not knowing. I expect you’re worried for yourself and your family as well.
Last week I got in a panic and rang the helpline here. Maybe try calling them and asking any questions about what to expect as that could help put you.
In the meantime, I’m sending you best wishes and love
I’m sorry to hear this. Have a look on RCLF website there are loads of patient stories on there (I have a couple too) of people in the same position as you. I am very similar and that treatment worked really well for me so hopefully it will be the same for you. I call the immunotherapy liquid gold! Good luck for Tuesday. Also if you get offered Hospice support take it, I found the counselling really helped me and I also use Instagram a lot. Lots of cancer patient stories to give you hope xx
So glad to hear positive viewpoints on the treatment, in particular the ‘liquid gold’. Thanks for the advice on hospice support and your wishes of luck. I hope you continue to react well to your treatment x
Just wondering if you were tested for mutations. It’s not a journey any of us want to be on but there is lots of support. Roy Castle have good booklets to read or order too, they cover different aspects of lung cancer and so you can choose the best ones for you.There are also local lung cancer support groups highlighted on the Roy Castle website. Hospice and Maggies Centres are also good places to get support.
Everyone’s story is different but I wouldn’t recommend googling lung cancer information generally as lots of it is out of date. I find it useful to make a list of questions before my appointments.
Thank you, I now only search on certain sites. I learnt that the hard way. If I’m honest, I’m not sure if I was tested for mutations, as I didn’t know enough to ask, or enough to understand/comprehend what I was told at my diagnosis. I know that sounds ridiculous, but this has been a very fast and turbulent period and I was very much in denial about it all. I will ask at my next appointment though. Thanks 🙏🏾
Hello Damonaldinho Welcome to the forum. Sadly your story is really common. I'm on this site because my husband was diagnosed with Stage 4 NSCLC a year ago (like you, he's fit, non-smoker, children at home). He was offered a choice of the triple therapy you have or a quadruple (a similar drug to pembro called tecentriq, 2 chemos (carboplatin and paclitaxel) and a drug which prevents the cancer cells making new blood vessels called avastin). With advice from his team, he chose the quadruple. He had this for 4 cycles, one every three weeks, then dropped the chemos and now has the 2 immuno drugs, still every three weeks. This treatment is working brilliantly for him and he is as fit and healthy as he was before he was diagnosed. There are many very new drugs have revolutionised lung cancer treatment so please be aware that the word "palliative" when talking about your care simply means "not curable". People are genuinely living with extensive disease for years and years nowadays.
You ask what you might expect going through this. In a nutshell, the chemo is quite tough but many people find it easier to tolerate than they feared but the immunotherapy is very likely to have few sides effects. Across the chemo cycle, the 1st week may involve feeling sick but quite fired up because of the steroids, the 2nd week may be the low point with tiredness and lowest white blood cells, and the 3rd week is building back up. In contrast, my husband has his immuno treatment and does some work whilst he's given the the infusion (!) - its hard to think of any side effects at all.
There are lots of things you can do to make the chemo more tolerable. The big thing for my husband was incredible constipation - sounds silly but it caused a host of other issues for him, including a short trip to A&E for antibiotics. The crazy thing was that it would have been easily preventable if anyone had said get some laxatives in! Any sickness should be well managed with anti-emetics and if they don't work, your team will change them to find one that does. I'd recommend keeping some notes as you go through each cycle so that you know what to expect on the next one. Its definitely helpful to be as informed as you can be, but only from trusted sources! This site is brilliant and Macmillan is too. Both have nurses available to talk to and we are incredibly lucky to have these support services to hand whenever we need them.
Thanks so much for the helpful and generous response. That’s all super helpful, I will digest all of that, and I will definitely keep some notes, as I’m already finding one day blurs into the next and I can’t seem to separate them when I have to explain what’s been going on…..and that’s before treatment!
I’m so pleased to hear that your husband is reacting well to his treatment. Long that may continue.
Thanks again and best wishes for continued health and happiness for your family. Damon x
Welcome - it's a very scary place at the start of the experience when all sorts of wild thoughts take over our imagination - dealing with the unknown - I was 52 when diagnosed like you out of the blue - and all the more shocking when fit and a never smoker - as for many it's never mentioned that anyone can develop lung cancer when our only mention of it may have been it only affecting certain people. Mine wasn't metastatic thankfully and I had open surgery to remove my 7cm adenocarcinoma in Dec 2010 (diagnosed Jan 2011) and was back at work and swimming by the end of March... my consultant told me that keeping active would help recovery so I went onto raise money for Roy Castle lung cancer foundation in memory of a dear friend and to help regain my lung fitness. Already a distance swimmer I went onto swim far further than I ever did before by a long way and use it for mental and physical health ...
I've been involved in lung cancer research since late 2013 and met other lung cancer survivors who had stage 3 and 4 who lived years and the treatment landscape has changed beyond recognition in recent years for every type of treatment.
As others have said, Roy Castle lung cancer foundation is a trusted source of information on so many topics including all types of treatments, side effects, hints and tips on coping with those, and living with aspects including managing symptoms, eating, travelling, financial support as well as helplines, online groups and groups some of which are now meeting in person again.
You're not alone although it can feel like it at times and the terminology (like palliative or 'treatable not curable' or 'terminal but treatable' sound so scary but as others have responded, there are many conditions like this that people live with...
There are also new treatments in development all the time and more being learnt about the various behaviours of tumours in lung cancer and what drives them which leads to new treatments or combinations of treatments being developed. I've known several who were given one type of treatment and by the time it stopped working, there were newer alternatives available for them... good luck...
Hi Janette, thank you so much for your message. I have to be honest, I, ignorantly, never thought lung cancer was something I had to worry about, I’ve never smoked either and have, mostly, led a pretty healthy lifestyle. Clearly that was wrong, but I also, having been diagnosed, thought there was no hope and I was not going to be around for much longer. Now I know there are no guarantees, but it gives me so much comfort to hear so many positive stories and information about how quickly the available treatments are evolving.
I’m glad to hear your recovery has gone so well and thank you for all you have done in the research and fundraising areas. X
Thank you - some of the patients I met were very fit (triathlons, marathons, endurance cyclists for example) and noticed a change in their breathing/stamina but also found they weren't necessarily taken seriously - much more awareness raising is needed not only in the general public but also medics who need to send those with concerning symptoms for them for further investigation. good luck.
My brother who is 49 fit and healthy and a non smoker got diagnosed in October with stage 4 NSCLC. He had the same treatment as you will be having Carboplatin, Pemetrexed and Pembrolizumab every 3 weeks for 3 months.
He had his first scan last month and the tumours are shrinking. He is now on Pembrolizumab every 6 weeks for the next 2 years.
He has regained his weight he lost and going for daily walks and will be returning to work next week. Sending you best wishes.
Thanks kbatt . I’m really pleased to hear about the good progress your brother is making. I really hope that continues for him and his success gives me lots of hope for my treatment.
So sorry you’re here Damonaldinho. I started on the same treatment as you over three years ago for stage 4 NSCLC with mets in the spine. I have no sign of the disease now (and the hole in the spine has fused, although I don’t think I’ll be doing back-flips any time soon!) and I live a full life. There is lots of hope out there and I’m sure treatment has moved forward hugely even since 2019 when I started.
I can see you are worried for your children. I think we all do that, worry for our loved ones more than ourselves. Yours are young but hopefully they’ll be reassured as time progresses that their dad is okay and going to be okay. I am a single parent with no partner and my children were 18 and 20 when I was diagnosed. That was the hardest bit of all. (And worst thing of all was not me googling but them googling.). Your cancer diagnosis is understandably a big thing in your life now but hopefully you’ll have a relatively smooth journey and over time it will recede and become just ‘a thing’. There are blessings too, although it might not seem that way now. I treasure and cherish life and my loved ones as I never have before and the past three + years in many ways have been the richest and most fulfilling of my life.
I wish you well and hope to see you on this site for many years to come - hopefully telling your own story of how you got through.
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