positive stories stage 3b/4? - The Roy Castle Lu...

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positive stories stage 3b/4?

Rebeccaannerose profile image
17 Replies

Hi,

My partner was diagnosed with stage 3b NSCLC last July. So far he is doing well, now on immunotherapy (Durva). We’ve found that being positive and hopeful is our best coping strategy, does anyone on here know of successful curative treatment for 3b or have positive stories to share of stage 4?

With thanks 🙏

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Rebeccaannerose profile image
Rebeccaannerose
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17 Replies
58trinity profile image
58trinity

Hi Rebecca, I was told of my stage 4 nsclc about 3 years ago now, I was petrified when doctor told me I may not last 6 months, however, I had a 6 week course of radiotherapy which slowed it right down and helped my wheezing and breathing (liver was too damaged for chemo) I now have met stage 4 liver cancer and a couple of other mets I am at present just over my halfway course of Keytruda immunotherapy and apart from the odd infection I feel absolutely wonderful, my mates keep telling me I am looking great and can not believe how I remain so positive, but hey! Never let it get you down, POSITIVITY is what can fight this disease till the end, good luck to your hubby and to you, red wine also helps😁. Take care all.Tony

Ps, big shout to my cancer team at Mount Vernon hospital, they keep me going.

Rebeccaannerose profile image
Rebeccaannerose in reply to 58trinity

Thank you Tony 😊

RoyCastleHelpline profile image
RoyCastleHelplinePartnerAsk the NurseRoy Castle

Dear Rebeccaannerose

Thank you for sharing your encouraging post and hope your partner continues to be well on his treatment.

Some cancers, if caught at an early stage 1 can have curative treatment, for any other stages it can be treated or the cancer put into remission. Thankfully lung cancer treatments have improved greatly in the last decade with both Immunotherapies and Targeted therapies.

Hope you hear some positive feedback from others in the forum . Research has shown that people who have a positive attitude do seem to do better.

It can certainly be a great struggle for many people and I hope that by sharing your experience it may help others who need that encouragement.

Our contact details for ask the nurse service: free phone helpline number 0800 358 7200 Monday to Thursday 0900-1700 and Friday 0900-1600, alternatively you can email us at lungcancerhelp@roycastle.org

Kind regards

The Roy Castle Support Team

Cosmic54 profile image
Cosmic54

Hi Rebecca I was diagnosed with Stage 4 NSCLC august 2021 I had 14 sessions of radiotherapy then I had 35 sessions of immunotherapy I finished it last January all I can say is so far so good 👍 I had counselling at first and also taught mindfulness which both helped a great deal. Having a positive mindset helps so much otherwise you land up in a very dark hole and it’s difficult to climb out of. I’m now on 3 monthly scans and seeing the consultant which is scary because my safety net has been removed. Getting upset uses up too much energy which makes u feel cheesed off so all we can do we take each day as it comes. I wish u all the best for the future and keep thinking if positive things 💋

Rebeccaannerose profile image
Rebeccaannerose in reply to Cosmic54

Thank you cosmic, do you mind me asking where you found the counsellor? I’ve struggled to find anyone well versed in diagnosis shock and the waiting list at Guys (where my husband is being treated) is very long!

Cosmic54 profile image
Cosmic54 in reply to Rebeccaannerose

It was private we just went online to see if there was one local which she was, it was just after Christmas that I was in a state and she agreed to see me between Christmas and new year she was brilliant we’ll worth paying rather than going on a huge long waiting list we are now good friends and she also gave me the tools to use if I get in a state again which sometime I can start to slide 👍

Straylian profile image
Straylian

Hi Rebecca. I was diagnosed with Stage 4 lung cancer with mets in September 2019. I had private counselling to help cope with the shock, i found this helpful. I had 4 rounds of Cisplatin with Pembro over 12 weeks. The response was very good with a 70% reduction in the tumour and 3 out of 4 mets disappearing. I was then placed on maintenance chemo and immunotherapy for the next 2 years and had 33 infusions over that time. My treatment finished in August 2021 and I am currently on surveillance only, in remission and CT scanned every 6 months. I have continued to work full time since diagnosis and try to live life to the full.

Rebeccaannerose profile image
Rebeccaannerose in reply to Straylian

That is a brilliant response and very positive thank you!

Same question I asked another member who had counselling, do you have any recommendations? Good cancer counselling seems hard to find and I’m on an endless waiting list at Guys.

Thank you ☺️

Straylian profile image
Straylian in reply to Rebeccaannerose

HiI live in the Midlands and my wife managed to find a local physiotherapist. Like you I found out the waiting time for an NHS appointment was more than I was prepared to wait, hence going down the private route. I would say that despite my reservations I found the whole therapy thing worthwhile. Whilst not having any particular recommendations I would just say do your research. Good luck.

kri312 profile image
kri312 in reply to Straylian

Incredible and gives so much hope to all who fear a much shortened life once diagnosed! Contined remission wishes for you!

as the others have said there are so many positive stories that will give you hope! Roy castle has some superb ones that you can read through. I also told incurable and 2-5 years. I am 4 years in and on surveillance after only 6 months of treatment and stable … which I hope continues for many more years to come! Hope and positivity 100% help!

Rebeccaannerose profile image
Rebeccaannerose in reply to Cockailschemocancer

Thank you ☺️

Teamd profile image
Teamd

Hi,

Sorry to hear that but glad you are staying positive, hope your hubby is too as it makes a massive difference. My hubby was diagnosed 2020 with stage 4 lung cancer and was put into palliative treatment plan and offered immunotherapy prembo…. We are still here close to 4 years later as is the miracle man, 2 years of immuno and now 18 months off it and all clear and stable scans… they are working wonders. Stay positive as I promise it helps, my hubby hasn’t ever need acknowledged he has cancer and carries on a very normal life…. I know he is very very lucky and not everyone is as fortunate as him but sometimes some good news helps others. Hope this gives you hope xx

Rebeccaannerose profile image
Rebeccaannerose in reply to Teamd

It really does, thank you ☺️

Ellejayb profile image
Ellejayb

Yes, I’m still here over five years after an incurable diagnosis of Stage 4. I’m a firm believer in positivity! Have you tried the Maggie’s Centres charity. I think they might offer counselling for cancer patients.

ConnectRoyCastle profile image
ConnectRoyCastleAdministratorRoy Castle

Hi rebecca,

We are going to run an online support group for those going through Chemotherapy and Immunotherapy beginning 3rd of June. No pressure at all, just thought I would let you know.

Warm Wishes

Ellen (Roy Castle)

sassassas profile image
sassassas

Hi Rebeccaannerose

I can add to these positive stories too. My husband was diagnosed in March '21 with stage 4 NSCLC - a total bombshell at the time. He had 4 cycles of chemo + immunotherapy, then dropped the chemo and continued with immunotherapy for 3 years in total. He & his oncologist have just agreed to stop treatment now as there isn't any convincing evidence that continuing it adds more benefit.

He is considered "no evidence of disease", and has been for around 2.5 years (incredible really, he had so many tumours in his lungs, bones and lymph nodes when it was diagnosed).

Like others here, he's continued to work and be very active (he's a keen cyclist & runner) all through his treatment. Physically he's in great shape for a 57 year old 😂 and works hard to maintain a healthy lifestyle.

I can't lie that it has been very hard for him on his mental health at times, even though he's had such a brilliant response to the drugs, and he's naturally always been a glass half-full person. Its something that I think only patients & carers can understand. He did have a set of counselling sessions offered by Macmillan and he'd really recommend that. It was really helpful to talk to someone who understands what it means to live with cancer.

Wishing you & your partner all the best.

Sarah x

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