Just need hope : So it’s been two... - The Roy Castle Lu...

The Roy Castle Lung Cancer Foundation

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Just need hope

NRd19 profile image

So it’s been two years for my dad on immune therapy and he has been doing really well slight side-effects are very itchy rashy skin but other than that he has been amazing he has now had his last treatment as you will no that it is only a two year trial, now starting to worry that the cancer will spread and we are all not ready for that, he looks so well , they said they will keep an eye on him and scan him to see how he’s doing any change and I will give him some other treatment which is worrying because he might not cope with another treatment as well as he has done on this immune therapy , has any one been able to go back on this treatment at a later stage or isthat it once you have had your 2 years . Let’s keep fingers crossed all goes well my thoughts are with anybody going through the same take care xx

18 Replies
RoyCastleHelpline profile image

Dear NRd19

It is good to hear your Dad has had a good response to the Immunotherapy he has been on. It is understandable your worry and anxiety to what happens next with the treatment coming to an end.

As you know Immunotherapy is only licensed for a 2 year use, however in some cancers, it has been noted that in stopping the treatment may not stop the persons response to it, which is an unexpected and encouraging find.

Hope you hear from others in the forum, as there are some who are in years 5 - 7 from starting treatment. Your Dad's check scan will be a good indicator how things are going and clinical trials are restarting again, which always provides hope for the following years.

If you would like to discuss anything you can either email us at lungcancerhelp@roycastle.org or call our free phone nurse led helpline number on 0800 358 7200 Monday to Thursday 0900-1700 and Friday 0900-1600

Hope all goes well for you all.

Kind regards

The Roy Castle Support Team

Hi look up a post by Manninmaid regarding pembrolizumab very informative. In 2018 I was diagnosed with Stage 3b lung cancer I was lucky to be a candidate for immunotherapy and commenced on pembrolizumab in October of that year. After 10 sessions I got immunotherapy colitis a bad side effect and had to stop treatment. However the pembrolizumab had done its job I no longer had any cancer in my lymph nodes and the tumour was being maintained by the treatment (inactive). My oncologist informed me that immunotherapy continues to work on the body but for how long was unknown. Moving forward to this year and my cancer has returned to 2 lymph nodes in my chest. Just completed Radiotherapy so 🤞. Immunotherapy is a great new treatment and I'm sure others on here will tell you their success stories. I wish your dad continuous good health for the future xx

NRd19 profile image
NRd19 in reply to Ollie13

Will keep fingers crossed for you hope all goes okey , thank you for your message its very encouraging to know that , such a shame it can’t be used again if it returns if they know that it works so many questions you just want them to say they can stop it altogether but i know that it can’t but dad is so positive and I’m sure this helps xx

NRd19 profile image
NRd19 in reply to Ollie13

I have tried to look for that post but unfortunately I can’t find it xx

Ollie13 profile image
Ollie13 in reply to NRd19

Hi go to the home page here you will see along the top Home Posts Members About. Click on members then search Manninmaid it should bring her page up then you will see the post xx

NRd19 profile image
NRd19 in reply to Ollie13

Thank you xx

Hello NRd19.

Glad to hear your Dad has done well on immunotherapy.

In my case I am fortunate enough to have private health insurance so have been able to continue on immunotherapy beyond the two years. At the same time, I am aware that no optimum treatment period has been established with it being a relatively new treatment and there are people who have had a sustained response beyond ending treatment.

I do however believe that lung cancer patients should be treated in the same way as melanoma patients who can continue to receive immunotherapy, funded by the NHS, until disease progression or unacceptable toxicity. There is an Immunotherapy UK Policy Campaign of which I am a member which is seeking to address this disparity in treatment. It may be of interest to you to look this up on Facebook. There are people who have posted there who have stopped treatment after two years but have remained stable. You will also find the explanations received from NICE.

Wishing your Dad well and I hope he has a sustained response.

Sending best wishes and positive thoughts to you both. x

NRd19 profile image
NRd19 in reply to Manninmaid

Thank you so much good luck to you too i will go and look now ☺️

Manninmaid profile image
Manninmaid in reply to NRd19

You are very welcome. Hope you find the posts there helpful.

I’m the same as Ollie13 and had to stop after 8 rounds due to colitus.

8 months down the line and I’m still stable, I think it kick starts your immune system to fight the cancer. I have met people online that haven’t had treatment for 3+ years ans still stable from it. Therefore I hope your dad is the same and remains stable. It’s a scary one as you want the treatment to continue to get rid of it all, but trust the oncologists they know their stuff!

Best of luck to you and your dad xx

Aww thats brilliant news for you and gives us as a family hope , thank you for your message wishing you all well xx

I am on immunotherapy again as part of the Matrix trial.Immunotherapy in conjunction with trial pills AZD6738.

So check your area and see where trial is carried out.

He would need to suit their requirements.

But not if he's still getting his two year treatment.



NRd19 profile image
NRd19 in reply to foodbankcupar

Thank you how do you find out x

foodbankcupar profile image
foodbankcupar in reply to NRd19

You're consultant puts your name forward. Then an interview at that centre.Reading up on all material for Matrix trial. You can read on line... Google it.



NRd19 profile image
NRd19 in reply to foodbankcupar

Thats fab thank you all the best on your journey, nicky x

The national lung matrix trial (CRUK funded) is offered in a number of UK hospitals so ask your lung nurse or oncologist if yours is one taking part as it has a number of 'arms' and 'agents' from different pharmaceutical partners to learn more about the different mutations. It continued throughout the pandemic although not in all the centres so worth checking. As others have pointed out, the 2 year guideline is the current NICE policy and many patients mount a good immune response and remain in remission several years later - some of the ongoing trials that have actually completed the treatment are still gathering data and many are showing longer survival and progression free results than originally envisaged so try not to panic although I do understand your concern. Cancers are treated differently as other posts state - for example some breast cancer patients need to remain on tamoxifen for years but that also brings problems of its own - so treatments are researched for very specific patient characteristics and lung cancer now is treated in a much more targeted way than even 7 or 8 years ago. If patients do develop another cancer or recurrence, those characteristics may be different or other treatments may have been developed making further treatment possible. In the 10 years since my diagnosis the available treatments developed via clinical trials globally have transformed the landscape for non small lung cancer but still more to do for those who don't respond well to immunotherapy. good luck. birmingham.ac.uk/research/c...

NRd19 profile image
NRd19 in reply to JanetteR57

Wow 10 years thats so good , i will mention it to dad to ask see what they say , I’m reading good outcomes from immune therapy its amazing how far they have come many thanks nicky 😊

I had surgery to remove my tumour and half left lung but no treatment since . I've been on the stratified medicine programme board (which lung matrix trial reports into) since 2015. I've met many patients who've survived many years with 'traditional treatments'. Where it works, immunotherapy has changed the landscape and combining treatments and using targeted agents where appropriate has also improved things. When diagnosed, the only targeted treatment available was for EGFR but I tested negative and immunotherapy wasn't around. Never give up - things change all the time in lung cancer treatments due to the large number of trials underway globally....

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