Immunotherapy

[mishamilo53]

hi everyone I’ve been advised that I can start immunotherapy within 41 days of my 6 week chemo / radiation treatment ending which means mid January … I’m very apprehensive about immunotherapy as I’ve only heard mainly bad stories I guess ….. can anyone offer any positivity about it at all ? Re side effects etc , thanks Elly x

[Cosmic54]

Hello pet, your certainly going through it aren’t you…I have been having immunotherapy since August 2001 I came off it for nearly 12 weeks because I kept getting chest infections, they wanted me to come off of it to see if it was the treatment doing it or just your every day virus, went on steroids and after a CT scan they found it wasn’t anything to do with the treatment so I restarted it again…the only side effects I get are tiredness and constipation both can be sorted with resting and taking something to shift the offending bung ! 🤦‍♀️💩🤷‍♀️🥹 but you can only have it for 2 years because once it’s sorted out the cancer it will still continue to attack anything it thinks is alien so it can attack your kidneys, liver so on and so forth. Just imagine it’s like a packman flying around firing rockets at the aliens…some people are different and have all sorts of different side effects…my oncologist told me it was a real game changer 👍 take care and hang on in there …. There is a light at the end of the tunnel pet 💋by the way it’s not effected my appetite 👍

[mishamilo53 in reply to Cosmic54]

thank you for your reply . I was told it decreases my chances of recurrence by 15-20% … (if my tumour had responded to the chemo radio in the first place) … I’m weighing that percentage against the side effects I guess and trying to make a decision , it’s so hard isn’t it x

[Elt79]

Hi - Immunotherapy (Pembrolizumab) was my first line treatment.. Stage IV NSCLC with brain and adrenal mets. My prognosis was not good. I had SRS for brain mets prior to starting. Treated for 2 yrs Nov 2018 - Nov 2020. Tumour shrank well so also had ablative radiotherapy to my lung in November 2019. I have been fortunate in that my side effects were not severe - ongoing skin irritation, night sweats and some fatigue still but I am currently NED - last scan was February 2022 (moved me to annual scan, which is bit scary). I hope this helps - I know results/experience is different for everyone but wishing you all the best x

[mishamilo53 in reply to Elt79]

thank you for your reply , I’m told that if my treatment has worked then immunotherapy can reduce my risk for recurrence by 15-20% so I’m balancing that against side effects etc …. I obviously need a lot more info which I’ll get at my results meet in January x

[Cockailschemocancer]

hi there - I also had immunotherapy- liquid gold I call it. Only managed 9 rounds as I developed grade 4 colitis as the immune system started to attack healthy cells. I’m 2 years post any treatment and my cancer is sleeping - or no evidence of active disease, so given the choice even with that side effect. Yes I would take it again for the results or brings. Best wishes to you xx

[mishamilo53 in reply to Cockailschemocancer]

hi there thanks for you reply , grade 4 colitis ? Have you been left with that condition once you stopped immunotherapy? X

[Cockailschemocancer in reply to mishamilo53]

I still have flares but certainly not grade 4 anymore! I had it bad for around 6 months and was closely monitored by my oncologist team who were fantastic - if you have any symptom that’s not normal for you, it’s wise to call straight away! Xx

[mishamilo53 in reply to Cockailschemocancer]

thank you so much for your input …. I want to go into this discussion with the oncology team fully armed with understanding and questions …. I was too scared when we discussed my initial treatment and just nodded in all the right places . A rabbit in the headlights …. This time I want to fully engage with the decision. Does that make sense ? .. the helpline just sent me a great link to information, that’s helped ! But nothing beats feedback from people going through it so thank you for the time you’ve to give me your experience x

[Cockailschemocancer in reply to mishamilo53]

oh yes for sure go in with questions and when your on treatment if something doesn’t feel right then tell them straight away. Immunotherapy I was told is a game changer in lung cancer treatment - doesn’t work for all but when it does it’s good. Wishing you all the best xxx

[mishamilo53 in reply to Cockailschemocancer]

Thank you x

[RoyCastleHelpline Partner Ask the Nurse Roy Castle]

Hi Elly

Immunotherapy can be a game changer for a lot of people with cancer, and as everyone has said, each person may react or respond differently, but the oncology team will be monitoring you closely when you have your treatment.

This link will take you to our information booklet on Immunotherapy: roycastle.org/app/uploads/2...

If you would like to discuss anything you can call our ask the nurse helpline number on 0800 358 7200 Monday to Thursday 0900-1700 and Friday 0900-1600, please note we close on the 23rd December, open for one day on the 29th December and return on 3rd January 2023. Alternatively you can email us at [e-mail] and we shall respond as soon as we can.

We hope you have a happy and safe Christmas.

All the very best

The Roy Castle Support Team

[mishamilo53 in reply to RoyCastleHelpline]

thank you for the information x

[Ellejayb]

I have been on immunotherapy for four years since I was diagnosed with Stage IV in January 2019. I have not had any side effects - or any that I’m aware of. Perhaps a bit of tiredness (although that might be laziness or simply ageing!!) but not anything debilitating. I am a huge fan of it - and so so grateful for the full and normal life I have been able to lead. I know it doesn’t work for everyone but I really hope it does for you.

And you’re right to ask for input from here, real-life stories from the patient perspective are invaluable I find!

Good luck!!

[mishamilo53 in reply to Ellejayb]

yes thank you for you kind reply information from other patients is what I needed .., I know everyone responds differently but I had such bad reactions to chemo that I’ve become quite anxious about the next phase - immunotherapy…. I want to enter into a fuller discussion with my oncologist about this in January than I did going into chemo/radio treatment as then I felt like a rabbit in the headlights I was so scared …. This time I want to feel more fully engaged in the discussion , so I thank you for your input , I’m so glad it’s working well for you , long may that continue x

[foodbankcupar]

Hello I had immunotherapy for two years. I am currently in remission.I had some chemotherapy then four weeks of radiotherapy.

Cancer in right lung and spread to lymph nodes in neck.

I had some side effects.

Bronchitis s few times. Also Balinitis and phlebitis.

Depends on yourself ☺️

Your side effects may be different.

Good luck

Kevin

[mishamilo53 in reply to foodbankcupar]

thank you for sharing Kevin good news you’re in remission x

[Brianderrick12]

Hi - my brother is doing very well with his immunotherapy- he started on a mix of 3 treatments- 2 chemo & an immunotherapy- after 4 sessions they took one of his chemos away & left him on a maintenance programme. Some of the ‘ fluffiness ‘ in his lungs has disappeared- some shrinkage of his tumor- he’s stable enough at the moment so for that we are very grateful

[mishamilo53 in reply to Brianderrick12]

I thank you for your reply and so happy to hear your brother is doing well … I’ve just finished chemo / radiation so I will have immunotherapy on its own , Elly x

[Brianderrick12 in reply to mishamilo53]

Thankyou- Wish you a lovely Christmas & hope you continue to do well with your treatment

[mishamilo53 in reply to Brianderrick12]

thank you and to you and your family x

[sassassas in reply to Brianderrick12]

hi Brianderrick12 it’s good too hear that your brother is doing well 👏

[Leniko]

I did great on Avastin as a maintenance drug. It kept me in remission for a long time. I just switched to Gemzar due to increase in CA125, but am hoping to be able to go back on Avastin again.

[mishamilo53 in reply to Leniko]

I’m not sure which one I’m going into yet … thanks for replying and Joe you get back on the one you’re happy with. X

[sassassas]

hi Elly

Happy Christmas to you!

I can add my husband’s experience to the other posters here - immunotherapy has been a game changer for him. He’s almost 2 years from his stage 4 nsclc diagnosis and has been “no evidence of disease” for about 18 months now. ( He had chemo too for 4 cycles to kick off with).

This just would not have been possible without immunotherapy. We are immensely grateful to all the scientists who were involved in the decades of research and the patients who agreed to participate in the clinical trials. With the diagnosis he had, it’s unlikely he’d be here now without it

He has treatment every 3 weeks and has no side effects - some people do of course, but many people don’t.

You can always start the treatment and then change your mind if you don’t like it. But if they are offering it to you, your team clearly think it’ll benefit your prognosis.

Best wishes in your decision making xx

[mishamilo53 in reply to sassassas]

Thank you Sarah , It really helps to hear others that have been through it getting positive results …. Thanks for taking the time to post , merry Christmas love x

[mikee2all]

My question is, what medicines are involved with immunotherapy? Is Tagrisso one of them?