Hi all
I hope everyone is doing ok out there and you’re all as well as you can be.
Quick update…I was diagnosed with NSCLC with mets to spine and lymph nodes (T4 N3 M1c) on 9/01/25! I also have lymphangitis. (Inflammation of the lymph vessels) caused by the cancer.
I’d had a chest infection on holiday in the Caribbean last September and was still wheezing at night from it in December so I sought my doctor’s advice.
I had a chest X-ray on Christmas Eve, a CT scan on 3/01/25, I had no clue, I was expecting a diagnoses of asthma or similar…I’m an ex smoker…I gave up 16 years ago.
I also have rheumatoid arthritis, longstanding for over 30 years which is controlled mostly successfully by drugs….I know right 
My lung cancer is non operable, and non curable!
A huge shock as most of you here will know, for myself and the family, we went through all the normal stages, disbelief, upset, anger, why me etc
Did a lot of reading and frightened myself half to death but knowledge is power right.
Quite a few scans and biopsies later I saw the thoracic consultants, then saw my oncologist etc.
The oncologist actually told me and me and my husband that I did not get this cancer because I smoked, he said I would have got it even if I never had smoked and as daft as it sounds I was so relieved that I hadn’t done this to myself!
I now have a plan…yay…after a blood test was sent to the Marsden it was discovered that I have the EGFR gene mutation I am eligible for targeted cancer therapy which is what I was hoping for, I have read a lot about it and it can have excellent results for patients in my precarious situation. It’s not a cure, not for me anyway but some solid hope for a future all be it not as long as I would have liked.
Anyway I started treatment nearly two weeks ago, Osimertinib (Tagrisso) chemotherapy in tablet form daily and a Denosumab injection every four weeks at the hospital.
I’ve had my first injection and I’m two weeks in on the tablets.
I also have to take calcium tablets twice daily to replace the calcium in my blood stream as the Denusomab takes it from my blood stream and directs it to my bones to strengthen them and prevent fractures.
So far so good, very few side effects as yet, I’m a bit more tired than I was and my finger tips get a little bit sore but that’s it so far. They sent me away with Imodium, skin cream and mouthwash just in case of diarrhoea, skin rash and mouth ulcers but I’ve not had any of them….yet.
My wheezing is a little better and I’m hardly coughing at all, my cough wasn’t terrible but I did have one and it’s lessened. The only thing bothering me is back pain from my secondary lung cancer in my spine but pain killers help with that and I’m living life as normal for now.
This drug could give me years whereas on my diagnoses I would’ve been lucky to last the year. I have every faith in the science and that’s what I’m holding on to,
Keep your fingers crossed for me that it does the trick and buys me a few years….I’m routing for all of you lovely people fighting your own individual battles every day.
A shout out for the lung cancer team at Worcestershire Royal Hospital, they’ve been brilliant so far, so supportive (we live in the Malvern Hills area).
sending positive vibes to you all.
Hugs 
Jools ♥️
Hi Jennifer
Nice to her from you, sorry to here your RA has flared, that’s a worry of mine too but I had an extra consult with my rheumatologist two weeks ago to review my RA meds now I’m on my treatment and he’s just taken me off one…Hydroxychloroquine as he thinks it will be better for my heart. I’m also on Methotrexate and Salazopyrin which he says should be fine.
Im not on Durvalumab, that is immunotherapy. I’m on Osimertinib which is targeted therapy based on the gene mutation I have. Have you read up on Durvalumab ?
I was told immunotherapy might not suit me as I have RA but I guess that depends on which type they’re offering. If your oncologist has faith in it and thinks it’ll help you I’d be inclined to give it a go. Anything’s worth a try right?
Also have you not been tested for targeted therapy? If not maybe ask as it’s a blood test to see if you have the right gene mutation for it.
You’re right I am very positive now, I’m never going to beat this but I’m sure giving it a run for its money. Ive only got a few years to retirement and id like to see a bit of my pension lol
It’s all we’ve got is the chance to fight until someone tells us otherwise 
sending hugs and positive vibes back to you Jennifer
stay well
Jools
Thanks Jools
Yes I m under the Sutton Marsden and they are amazing so they are doing all sorts of tests but conferring with my professor at St George’s if he thinks he can manage any flare ups and he has said 
can it’s just unfortunate that I have not had a flare up for a few years but obviously chemo and 30 lots of radio can tell on you and they said the next 2 weeks after finishing are the worst whichs where I am .I am on Prednisilone and Salaz like you which has controlled it for about 25 years so I m lucky They have given me aBIG dose of Prednisilone to manage it and my lungs so let’s see I murrently on 2.5 and they have given me 40 !! Short term for 2-4 weeks but at 4 am this morning I was running better get all those jobs done while they give me energyWhat I learnt yesterday was if I am not well enough and it comes back I can still have it later but I m hoping that as it was s o tiny they have smashed it up and they were going for the cure which is why I had both chemo and radio .I think I was talking to you ages ago because when I looked at your name you were here for your mum?..
Keep strong
Jennifer
Yes that’s right I was, 9 years ago now, she passed 8 years ago only 9 months after diagnoses. Bless her I miss her every day.
I’ve actually only left the Oesophageal cancer forum today as my profile kept popping up as the one I wrote when I was supporting her instead of my lung cancer profile so I thought it was time to let go of it. Up until recently I could still see what I was posting back then, now it doesn’t go back that far lol
I think you and I have spoken here since my lung cancer diagnoses in January too though?
I’m similar to you, I’ve been on RA meds for 30+ years and for the most part it’s stable thank goodness. I have enough to deal with without that lol
Im so glad you’re doing well it’s lovely to hear people’s good news stories. You’ve smashed your chemo and Radiotherapy, fantastic!
Good luck with the immunotherapy if you choose to have it.
I think I need some of that prednisolone, I’m living my life as normal but some days at the speed of a sloth lol
Stay well
Positive vibes and hugs
Jools x
Hi David
thank you for the encouraging words, I can see your on an extremely challenging journey of your own and I truly hope you are doing well too.
My 40+ daughter is also on the spectrum and certainly has her challenges too so I can totally relate to your story.
I hope you get your plan sorted as soon as possible after your biopsy. I know how nerve wracking it all can be waiting to find out what they’re going to do next, it’s not easy at all is it.
It’s taken 3 months from my first test to get where I am now but they’ve been brilliant and I’ve never been left to worry. I feel much more at peace knowing I have a chance of a longer survival time than I would have had without these new treatments that are available.
sending you some positive vibes
Take care and stay stong
Jools 
Hi Janey
I’m so sorry to hear of your diagnosis….I know, it’s devastating right. I was exactly the same, when we first found out in early January, I had no clue, myself and my husband and kids cried and cried, I couldn’t sleep, I just thought ‘that’s it, I’m going to die’ I was absolutely terrified. A lot happened in a short amount of time, scans, lots of tests, biopsy’s, consultations with the thoracic consultants and then the oncologist, I still find it strange saying the words ‘I have incurable, inoperable cancer’ but I’m stuck with it forever, however long that is.
Now three months later I’m living my life and trusting the science. So far my targeted therapy isn’t giving me any trouble, I have little or no side effects and I feel almost as though there is nothing wrong with me apart from some back pain. I’m praying it works and shrinks my tumours and buys me a few years but we’ll see soon enough.
Try to think positive (I know it’s hard), because whatever happens they will be able to help you somehow, for how long no one can be sure but there will be something. In joining this group you’ve definitely come to the right place, everyone here will lift you up and support you and give you the encouragement that you need to fight.
It’s the club no one wants to be a member of but the best place to get your support because every single person here really does know exactly how you feel and how scary this whole process is.
Good luck with your procedure today, hopefully you’ll get some answers from that. I was lucky enough that the neck biopsy worked for me so I didn’t have to have the EBUS procedure.
Were here if you need us.
Be strong
Sending some positive vibes and a hug your way
Take care
Jools
