My dear mum was diagnosed with stage IV nsclc Adenocarcinoma back in July. This was found by chance on a scan for another unrelated issue. What a shock it was. She has mets to outer area of lung, mediastinum, adrenal glands, lymph. Could I be a wrong to say this could be a lot worse?
She has been tested for mutations but is not suited for targeted therapy so we’re now 2 sessions in on chemo carbo/pem. Apart from the tiredness and “5 day hangover” she’s doing ok on it. To say I’ve read all there is to read on this horrible disease is an understatement!! Mum is doing ok, she’s a bit down due to being kept awake by the steroids and her doctor put her on antidepressants which have helped with the sleep if nothing else. It’s a tough ride, for her and us, I feel like there’s an elephant in the room that no one wants there... sometimes we talk about it, others we just get on with life.
Could I ask... if symptoms appearing to ease during chemo be a good sign? She’s had a nagging cough which has eased along with no further running nose... I know we can’t really know but humour me. Positive stories really do provide hope.
I’ve read many wonderful posts on this site and thought it was time to contribute my own journey.
Thanks for your advice x
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LewLew19
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Sounds very similar to my diagnosis in May 2019, except I’m having carbo / pem & an immuno. My symptoms have eased & just had scan results back which shows a reduction in all the tumours. Lung, centre of chest & the lymph nodes in my neck. I’m feeling better once the chemo wears off & have put on some weight. Oncologist is happy with the results & wants to continue treating g me for the next 2 years. I still get the running nose, but the cough has almost disappeared. I’m feeling much more positive now. Wishing your mum all the very best.
Thanks for your kind words of support and sharing your experience. Mum has put a few pounds on, which is good as she’s naturally very slim so they were concerned about her dropping weight. She’s frustrated today as a letter has been posted to confirm the notes of an appointment 8 weeks ago..brings all the emotions back even though nothing has changed. A little frustrating but trying to keep her spirits up.
Absolutely it can mean she’s doing well with treatment. I had a cough and it produced a lot of bubbly mucous which went away. Also I had clubbing in my fingers that went away. Next month will be 9 years living with stage 4 lung cancer.
9 years. WOW. That’s amazing, I wish the information online would catch-up as there seems to be many more people living with this. When she first got diagnosed it looked so bleak.
Yes, the information on line is so out of date it’s terrifying. I am also very slim & was losing pounds on a weekly basis. Only after treatment 3 that my weight has increased. There’s so little up to information about that it’s depressing at times. I’m grateful that I’m doing ok & wish the same for your mum .
Sending hope you continue to gain. Are you able to tolerate Boost, cream soups, milk shakes, protein shakes? While going through treatment it’s important to add every calorie you can so if you crave something, eat it. You can worry about a balanced diet after treatment ends.
Thank you! I am able to eat most things. Just have weird cravings for the first few days after the treatment. Crave cold food, fruit etc. I’ve put 5lbs on in 2 weeks which is great as I was struggling just to maintain my weight. I seem to spend most of my time eating! Or planning what to eat. But drs say this is good. I make smoothies & try to eat a lot of calories.
In the 42 years between the time Nixon declared the war on cancer and 2010 when I was diagnosed there were 3 treatments approved for first line treatment for lung cancer. In the past there’s years there have been at least 25.
Its an exciting time to be an advocate or patient. We haven’t had many of these long enough to have any idea about long term results but the survivorship data in the last few years has increased exponentially.
I too am stage IV NSCLC with mets to brain and adrenal gland diagnosed last October - had radiosurgery to brain last November and just pembrolizumab since. Recent PET scan was very positive! Not saying it’s easy but try to stay strong and positive - my side effects are manageable and I take each day as it comes. I am 66 and live on my own and managing to stay independent 99% of the time now, despite having to give up driving licence due to brain mets (hopeful will get back soon!!) My two daughters live some distance and were here a lot in the beginning and come regularly, but coping ok. I’m just so glad to be here and wish your mum best of luck for positive results - love and best wishes to you all💕
Thanks for your kind words. I feel like we’re all living with the cancer black cloud even though it’s mum who has it. But hearing this stories provides hope and encouragement that she can live a good life still. All the very best to you. You’re showing cancer who’s boss!!!! X
As you see there a lot of positive posts from others who have been in similar circumstances to your mum. Your mum will have repeat scans to assess the response to her chemotherapy treatment, it certainly sounds encouraging that her symptoms have eased.
If you would like to talk to someone please don't hesitate to call one of the helpline nurses on 0800 358 7200.
My OH is stage 4 with liver mets. He's on round 2 of 4 ABCP then immuno.
All your positive stories give me great hope for our future. Covid means ours sons wedding has been postponed, and your positivity has made me think that he Will go to the Ball next year!
It’s a bumpy road, but yes keep positive, stay off Dr Google and know that you’ll ALL be at the wedding next year.
As my mum said... I’m not going through all this treatment to be stopped by a cold.
Well we know it’s a bit more than a sniffle. But her sentiment is cancer is our fight. Coronavirus is just an annoyance. We can’t control it. But we can stay positive.
Immunotherapy has helped my mum so much, the cancer has shrunk and although she has some side effects they’re manageable. She’s also on it every 6 weeks which I’m so happy about given the current situation. She’s not due back now for 4 weeks but we’re ready for some delays. If the treatment continues to work a week or two delays isn’t going to change much.
Keeping in mind that everyone is different and side effects are still possible, I’d say that yes, Immunotherapy is totally different to chemo in our experience. Although mum is tired after the infusion it’s nowhere near as bad compared to chemo. It’s manageable and if you read online you’ll see the experiences of others matches hers.
Although she is more at risk of infections, immunotherapy isn’t the same as chemo in that it doesn’t wipe out your immune system.
For us we’re not as worried about her catching infections, but are careful still. She has her infusions once every 6 weeks so we’ve been able to get on with life! Before COVID...She looks after my 1 year old and he’s always got colds and she’s not caught one!
Our experience has been really positive and I hope yours is too! Please feel free to ask me anything. I’m no expert but I really found this site such a source of comfort. X
Hi, strange seeing this post as I’ve not seen anyone with similar symptoms as myself. What is it with July eh, July 19 I was told I had nsclc Adenocarcinoma sg4. I had some fluid on my lung too and was enduring chest drains as well as chemo carbo Pem. The four month treatment was rough glad my mrs was there to help, I wrote a diary and still do of my symptoms and side effect. I continued with work and golf all though it was hard, just getting on with life regardless of pain and discomfort. After 4 months I went to immunotherapy just Pem as they seem to think the less I’m at the hospital the better so from every 3 wks it went to every 6 wks, nice I liked that. I’m still doing every 6wks I have a CT scan every 3-4mths I’ve had a MRI brain scan, I’m supposed to have a bone density scan and I’ve had a PET scan, I think I’m scanned out tbh. I have a needle phobia so that’s quite amusing and if your mum would like to chat about anything I’m more that welcome to assist or we can chat like this. Jp
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A 'lucky' lady perhaps??
Mum diagnosed with stage 4 lung cancer which has spread to pleura
NSCLC, Stage 4, EGFR Mutation, Gefitinib, pain on left side of abdomen
