I was diagnosed with stage 4 lung cancer in early 2020 and was given the targeted therapy Afatinib. This was initially most effective but gradually stopped working and so the cancer spread further in the lungs. I then had five consecutive radiotherapy sessions which reduced the size of the main tumour but didn't get rid of it. This was followed by carboplatin chemotherapy and immunotherapy with the chemo only for the first 4 sessions. My first scan after 3 months showed that the cancer had stabilized but now the second scan has shown that the treatment has stopped working and I now have a pleural effusion with some spots of cancer.
I am despondent and scared. I have tried to stay positive and I read messages which I have saved that talk about this being a chronic illness and how people have survived for 10 years or more. I was determined to make it to 20 years but every time I start on a new treatment the cancer manages to knock me back.
Is there anybody out there who has had such a bumpy journey but then had a treatment that worked for them. Please let me know if you have. Eventually I am going to be started on Carboplatin and Pemetrexed and I badly need to lift my chin off the ground and regain some fighting spirit.
Thank you for being here. Please help me. I do hope that life is good for you and there are some positive responses out there.
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sally70
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Hi Sally,Have they done a tissue or liquid biopsy for this newest growth? The cancer has found it’s way around the treatment which would mean it’s added a new mutation. I don’t know if your health system will pay for a liquid biopsy but it would make sense and save money to establish why the progression happened.
Also, are there any clinical trials you can qualify for?
Hi Denzie, my partner was on chemotherapy and immunotherapy for 16 mnths, the tumor had shrunk a little and was advised to take a break from treatment for 8 weeks. In that time the tumor had started to grow again so is now going back in treatment. Is there a limit to how long he can stay on this treatment? I’m hoping it’s positive as it has not spread anywhere else. He has been playing golf and walking 15 miles per week, unfortunately when he haves a PICC fitted he is unable to play golf.
Most immunotherapy drugs are limited to two years. I don’t know which ones or why some stay longer. One of my friends has been on a maintenance treatment for 3 years. Sorry, I don’t know which drugs.
Write your questions down and make a point of asking your oncologist when you see him/her next. Ask for plain English answers, and stick with it until you have a good understanding of what and why.
Hello Denzie. I think the first thing I need to say is thank you for your swift response. It is so reassuring to have you to write to. Health Unlocked is like having a family but one you don't have to protect from the truth. I can say to this family I'm scared. I don't have to put on a brave face. I should add that I live in England and do not have medical insurance. I am lucky to live very near to the Royal Marsden in Sutton and I am treated by them. I had breast cancer about 20 years ago and Thyroid cancer about 5 years ago. At that time I used to attend the hospital on a regular basis for face to face appointments but Covid has ended this sort of treatment . I now go into the hospital for blood tests and then go home and wait for a telephone appointment. I have NSCL cancer, At the start I had a needle biopsy and then a second needle biopsy when the Afatinib targeted therapy stopped working. This was followed by 5 consecutive sessions of radio therapy and then a blood biopsy and treatment with Carboplatin for 4 sessions alongside Tecentriq immunotherapy. My cancer seems to be very good at rapidly developing resistance and the immunotherapy stopped working before 6 months. I am now going to be started on Carboplatin and pemetrexed (Ithnk) but will find out more on 4th Oct. when I have a face to face appointment. I am a little concerned that because I am 71 years old I am not being given the very harsh treatments but at this time I am fit. I will ask when I see the doctor on the 4th.
I have been with my husband since 1964 and will do all I can to survive and stay with him as we get older. Believe it or not I have tried to be brief but I need to say once more thank you and thank you everyone else on this site who takes the time and trouble to read and respond. Your time and trouble is truly appreciated. God bless you all. You are wonderful people.
Hi Sally, Michele from GO2 Foundation for Lung Cancer. I am so sorry you're going through this and feeling this way. If you want to talk to one of us on our Helpline to go over your diagnosis and treatment and get some support from us please call our number is 1-800-298-2436. We're here to help support you. With this comes some changes and having to figure out next best steps and treatments with your care team. Sounds like your staying on top of it with your healthcare team and educating and getting support on these lung cancer groups. Yes, lets help pick your chin up and give you places to go that might help talking to people or joining chats and support groups etc. This being a great place to talk to other people there is also our Lung Cancer Support Group where you can ask questions of speakers in real time about lung cancer and hear other patients stories . There is a Phone Buddy program we have that matches you with others going through treatment.
Here is a link to see all we have to offer in support for you. go2foundation.org/resources.... So many people feeling the way you're feeling and you being on here or joining groups you can hear all the positive stories of people living a good quality of life and how they're living with lung cancer... We're here for you and sending hugs to you... xo
Thank you so much for your prompt reply. I have copied the link you sent and will use it as soon as I have some quiet time. I am so grateful to have this site to run to when I just don't know what to do. I am also so grateful to all of you administrators who give up your time to be there for us whenever we most need you, Thank you
It's certainly a rollercoaster and having low moments is allowed - being strong might be an aspiration but it's not essential - it's natural to think how long is this going to go on for, and the treatments are wearing - I've met several patients over the years since becoming involved in lung cancer research (2014) after my own diagnosis in Jan 2011 and many had treatments then recurrence then newer treatments and since then so many new treatments have been approved. I also know that I met and worked with other lung cancer patients who survived 20+ years even before the newer treatments (targeted agents, immunotherapy, SABR, and combination treatments) came into being.... the real difficulty for clinicians, scientists, patients and relatives is that it isn't possible to predict who will respond to the treatments and how well that response may last.... more is being learnt all the time... but in the meantime, hope you can find a way to distract yourself - that's often been my coping strategy as I used to say to myself ' all things must pass' to will myself through some difficult times.... good luck... we're all rooting for you... x
Thank you Janette. I suppose I'm hoping that there is someone else out there who had a variety of treatments, over a relatively short period of time but who then had something that finally worked for longer than 3 months. I suppose the other problem is that every time a treatment fails the cancer takes a bit more . This time I have a pleural effusion with cancer spots to add to my issues. However, with all of you wonderful people rooting for me I have no choice but to straighten up and get back into the fight. Thank you so very much.
I totally feel for you, Sally ... I too had a confirmed diagnosis of Stage IV NSCLC in January, 2020 ... It was actually got discovered in early December, 2019 just by accident during my annual check up of my AAA stent ... Some Christmas present, NOT! ... Anyway my oncology team determined that neither surgery nor radiation would were good options so they started me on a treatment regimen of chemo & Keytruda the 1st week followed by the next 2 weeks of just chemo followed by 1 week of rest / nothing ... Then repeat the treatment regimen ... That regimen continued for 5 cycles (months) ... Based upon scans, they discontinued the chemo and switched tp a 6 week cycle of Keytruda treatment & scans every 12 weeks ... You did not indicate if your cancer is the small cell or non-small cell type but as you probably know the non-small cell type is much less challenging to treat ... I've also had serious emotional roller coastering but perhaps I'm lucky since my oncology team not only consists of an oncology doctor, an oncology nurse practitioner, and several oncology nurses but also includes a psychologist as well as a nutritionist ... even my cardiologist specializes in cancer patients ... When ever I started on the emotional downward trend, I have a session on two with the team's psychologist who'd help me through it ... I am like you in respect in being determined to beat this nasty bugger, ringing that bell, and living a long life to the fullest ...And be a PIA to all my amazing neighbors ... One's body also responds to a positive mental state ... I hope your oncology team include a cancer focused psychologist so definitely reach out to them ... If you team does not, contact your local chapter of the Cancer Society for possible referrals ... Best of luck and prayers in your battle.
Hello Scorp and thank you for your quick response. Sorry I took so long to reply but I have been getting my flu jab and seeing my dentist for some treatment before I start chemo on Tuesday. You are right I do have non-small cell cancer and at the start I came in with a fighting attitude. The problem is seeing each treatment fail so soon after starting them. I have started to think my cancer is undefeatable but I have to stop thinking that way and go in for treatment with a more positive attitude. There must be someone out there who has survived for at least 5 years who had multiple treatments fail at the start. I just haven't heard from them yet. My apologies, I am feeling rather sorry for myself at the moment and rather scared. In 20 years time I will txt you to say what a fool I was to waste all this time worrying. I am so lucky to have found people like you who take the time to write and to lift the spirits. Thank you again and you will be in my prayers tonight. God bless.
Hi Sally,I have had multiple treatments fail and begin another dx in 2012 it is Nine years of fighting this beast and it’s had its ups and downs. Had two reoccurrences with some quiet time BUT since June of 2016 I have been on nonstop treatment, one after the other, I’ve had more than 5 lines of chemo and finished a 2 year clinical trial this past March. After being off treatment for more than six months bc they said there was nothing more they could do…..I looked the doctor in the eye and said I’m NOT done yet! I am now on another chemo plan still determined. How do I do it? Support, prayer, faith, yoga, meditation, advocacy, and my favorite thing to say “ ALWAYS STAY in the HOPE 🙏⚓️🤍
I’m still laughing bc she went into say “you’ve had a good run, I’m proud of you” I will call hospice and get whatever you need….seriously? This is why WE listen to our GUTS and alWays STAY IN THE HOPE, sometimes these doctors say some stupid things ? 🥴😵💫🤭🙄
Hello June. I been at the hospital today getting blood teats and physical observations done before seeing a consultant. As I am starting a new treatment tomorrow it was a face to face meeting rather than a phone call. I said to this consultant that I had told the first consultant I had seen that I needed to live for 10 years. She responded that it would be hard work but doable. It gave me hope and it gave my family hope. Sadly this new consultant just gave a bit of a sniggering laugh. I am usually a bit shy but I was not having this. I said "no don't laugh. I am serious, some people are living for 20 years with this". I think he was about to go into the speech about that being very rare etc. but I told him not to. I wasn't asking for a guarantee but why does it so often seem like HOPE is a dirty word.
If we are keen to keep going then please don't tell us there is no more treatment. I would rather die trying than just sitting and waiting . Forget quality of life I choose quantity. Thank you June. I needed to read your message when I came home today. It was a great help. My best wishes to you and Stay In The Hope. Sally - London
Oh Sally you are so welcome! Mine has been a long hard road but I’ve “Always said it, meant it, and wrote it STAY IN THE HOPE.” My doctor may think I’m crazy to go thru this again but I don’t care I agree with you 100% Although the doctors so have education, training, seen lots of cancer patients BUT they don’t know me, my determination, my Hope, my Faith! In all honesty, no one has the right to comment because they are not living with lung cancer everyday! When someone not with this disease says something stupid, I always think to myself , you are not God and that’s who is going to make this call for me. Keep fighting, STAY IN THE HOPE! WE CAN DO THIS‼️Just got to believe Inside of ourselves.
Hi Sally70,I understand the treatment roller coaster. I was diagnosed in July 2016 with stage 4 NSCLC Adenocarcinoma. As already stated, I hope you were able to get tumor testing for mutations, etc.
I am on my 6th line of treatment, the current one is a clinical trial. Carboplatin and Alimta (Pemetrexed) was my first line treatment followed by 4 different chemotherapy lines with SBRT (stereotactic body radiation therapy) to my original tumor after line #2. I have never been on an immunotherapy like Keytruda or Opdivo.
I’ve been given hope each time I’ve needed to change treatments. We don’t ever know how long they will work but there have been at least 2 treatments I’ve been on that have lasted well over a year.
Wishing you all the best and please do take advantage of the suggested websites.
Hello PegD. My apologies for the delay in my reply. Your journey since July 2016 has involved 6 changes of treatment and you have kept your chin up and a fighting attitude. You are the example I need to follow, living with this as a chronic disease that I will treat. I suppose I worry that the hospital will say "we can't give you any more treatment". But I will try not to keep worrying about this. Not sure I will be able to stop this but I will try. I sometimes think that my fellow members who live in the USA have access to more treatments than we do in the UK. When I was first diagnosed I asked about SBRT but I was told that like surgery it was not suitable for people with stage 4 cancer. I just hope that I will offered all available treatments that are suitable for my cancer. I'm sorry Peg. You have given me hope and I have started to moan about the future again. I will re-read your message and take on board the good news it offers. Thank you again and wishing you all the best.
Hello Sally, Yes, I totally understand that this is a hard journey. At the moment my only treatment is immunotherapy, for just over a year. This is going well so far which certainly is to be welcomed. I find that knowing I am not alone does help and support groups have been beneficial. They help calm the feeling of being so alone with all this. But ultimately this is very tough and sometimes we just need to acknowledge and accept that fact. Sounds like you are having a particularly tough time at the moment. Take care and be kind to yourself.
Hello Kayseez. I am pleased that for you immunotherapy is working so well. I hope it continues to do its job for a very long time to come. You take great care . All the very best. Sally
Great group for support, everyone should take a look. New grassroots group advocating for lung cancer awareness! Just celebrated one year, it’s truly inspiring to me.thewhiteribbonproject.org/
Sally, I know your post was a few months ago but I’m catching up on emails now lol. I am one of those stories of hope with ups and downs: diagnosis stage IV NSCLC in April 2015. I started with carboplatin and pemetrexed for 9 doses and then dropped to maintanance with the Alimta only. At 13 months, we found 2 large brain metastasis sites causing craniotomy. Over the following years, I had more brain Mets treated with stereotactic radio surgery. Two years ago after more than 70 chemo treatments, we found progression in a couple small spots in my lung. I had SBRT targeted radiation to those lung spots, biopsy and biomarker testing, and began immunotherapy Opdivo with Yervoy. A flare caused many liters of fluid in my belly (I had a drain for a couple weeks and then handled with interventional radiology visits for a couple more). We continued the immunotherapy, dropped to maintainance of Opdivo only. This month marks two years on that and now N.E.D. my oncologist and I will discuss stopping the treatment next month and monitoring me closing with scans. Yes it has been a very bumpy road, but I am amazed to be posting this nearly seven years after that awful week in the hospital from which no one could guess if I would survive the week or not. Best wishes
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