Immunotherapy

[arthurpops]

Hi all, I'm starting immunotherapy tomorrow on what is my third time of having lung cancer, I have been told that this time it is incurable and am concerned about the side effects of the treatment, can anyone relate their experiences so I know inadvance , thanks

[RoyCastleHelpline Partner Ask the Nurse Roy Castle]

Hello arthurpops,

As I am sure you know immunotherapy is still a relatively new treatment for lung cancer, many patients have a great response to this type of treatment. I have added a direct link to our booklet, which explains the treatment and what side effects are most common.

roycastle.org/app/uploads/2...

On this forum you will find many accounts from people who have shared experience of this treatment and how well it has been tolerated and what side effects they have experienced.

You are very welcome to contact us to have a chat about anything on our ask the nurse service, you can email ask the nurse at [e-mail] or call our free phone nurse led helpline number on 0800 358 7200 Monday to Thursday 0900-1700 and Friday 0900-1600

All the very best

[Ellejayb]

As I write this, I’m currently having my immunotherapy infusion at the hospital. I’ve been having it for over five years for what was diagnosed in Jan 2019 as incurable Stage IV NSCLC. Any side effects have been manageable for me - a bit of itching, the odd rash - and I had the results of my scan today which showed no active cancer still. I hope Immuno works for you too and sends the cancer packing!

[kri312 in reply to Ellejayb]

remarkable - tumors not growing or have shrunk completely? Just not sure what you mean by "active'! Stay well and continued great scans.....not on anything "yet" after resection but with EGFR+ Lung Ca,I think that recurrence is just a waiting game....

[Ellejayb in reply to kri312]

The 8.5cm x 5.5 cm tumour kept on shrinking and shrinking until there was just a little bit of ‘unknown’ left - which was thought to be scar tissue but blasted with radiotherapy anyhow. So yes, touch wood (I do a lot of that!), all good at the moment. I hope it works out well for you too - it’s pretty amazing what can be achieved now.

[kri312 in reply to Ellejayb]

So happy for you! And yes I knock wood daily and think of us all.....

[58trinity]

Hi arthurpops, can only speak for myself, I am 13 months into my 2 year immunotherapy (Keytruda) at Mount Vernon hospital, apart from feeling slightly tired at the beginning, I have had zero side effects and carry on with my life as normal.Stage 4 nsclc lung cancer male , 63. I hope you find it as easy as I have.good luck to you. I have mine every 6 weeks and it lasts for about 50 mins to an hour, can be boring, so take something to occupy yourself, book etc.

Tony

[kri312 in reply to 58trinity]

Can I ask what plan typically is after 2 years? Wonderful you have no side effects!

[58trinity in reply to kri312]

As far as I am aware there is nothing but palliative care, the UK government only fund for two years, but they say that if it is going to work then two years will be enough for your own immune system too keep it in check, but hey!I am not convinced of governments sincerity, I shall just keep my fingers crossed and think positive. It certainly keeping my lungs cancer in check, and a lot of my mets, I am at present awaiting a call from ENT dept for a throat biopsy result taken two weeks ago, so I shall know. More of the efficacy of immunotherapy in about an hour's time, I will update with the result shortly.Kind regards Tony

[kri312 in reply to 58trinity]

Please do!! Stay well!

[58trinity in reply to kri312]

All clear on throat biopsy thankfully, maybe a first symptom of immunotherapy? time will tell, today i shall raise my glass of merlot to me and everyone else on this site.

[kri312 in reply to 58trinity]

Well earned! Have 2!

[ConnectRoyCastle Administrator Roy Castle]

Hi arthurpops,

we are going to run an immunotherapy/chemotherapy support group online if that is something you would be interested in? It will start at the beginning of June, let me know if you would like to join in. No pressure, just thought I would pop on to let you know.

Warm Wishes

Ellen (Roy Castle)

[foodbankcupar]

Yes I had immunotherapy for two years Nivolumab.Side effects were mostly chest infections Bronchitis treatment of Amoxicillin. After Radiotherapy. I volunteered for experimental drug treatment later but stopped as side effects were unpleasant.

My lung cancer is now cleared but had spread to lymph nodes in my neck. Recently had surgery for that.

I also had prostate cancer three years ago

Successfully treated with radiotherapy.

Best wishes on your journey.

Kevin.

[VikingRoots]

Hi.

Here's a couple of study links that report on the benefits of continuing/ discontinuing immunotherapy for more than 2 years.

jamanetwork.com/journals/ja...

clinical-lung-cancer.com/ar...

In a nutshell: there's not strong evidence that continuing forever adds any more value for those people who have responded well at 2 years.

I've actually been on for 3, but on the back of these reports, and discussions with my oncologist, I've literally just this week decided to stop treatment. Scans will continue every 3 - 4 months for a while.

My scans have been clear for a couple of years, and I've not had any significant side-effects, apart from increased blood pressure from Avastin. My immuno was Atezolizumab.

The studies also suggest that 're-challenging' if cancer does come back can have a repeated positive response...so while I've stopped for now, I've had confirmation that I can restart if needed.

Hope this helps.