Crossroads ahead

[Nairnite]

Hi, after being diagnosed with SCLC in August this year, I've been undergoing both immunotherapy and chemotherapy since then. At the end of October I'm due for a 4th chemo cycle review to see how treatment is working and make a decision on what's next in terms of treatment. My options are 2 further rounds of chemo or switch to immunotherapy every 3 weeks for the next two years.

Has anybody experienced having immunotherapy over a long period and can give my an idea of the side effects and things to watch out for?

Does anybody have any advice on which option would be best given that SCLC is aggressive and has the potential to jump around my body if not managed?

many thanks

Nairnite

[RoyCastleHelpline Partner Ask the Nurse Roy Castle]

Dear Nairnite

Sorry to hear of your lung cancer; there have been many people who have taken Immunotherapy over the two years and hope you hear from them in the forum.

As you know, everyone can respond and react differently to any treatment.

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

This link is our booklet on Small cell lung cancer and details potential treatment options: roycastle.org/app/uploads/2...

This booklet also details how Immunotherapy is given and the side effects. It can also depend on what drug they give you and you can look up specific drugs on the Cancer Research UK at cancerresearchuk.org

If there is anything else you would like to discuss 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

Kind regards

The Roy Castle Support Team

[Ceibach]

Hi there... My husband had 4 rounds triple therapy... He is on immunotherapy plus a trial. Stage 4.... His scan results have been amazing...... But atm he has either chest infection or pneumonitis. Steriods and antibiotics...... This can be a delayed reaction from any of the treatments........ Have great trust in his oncologist..... Follow your instinct..... And sending healing prayers

[Nairnite in reply to Ceibach]

Hi there, thanks for getting in touch, my scan results have been good so far and feel the treatment is working at keeping disease under control but it does worry me that the more treatment I have the more side effects I seem to be experiencing but you're right I need to follow by instinct and believe that it will all work out in the end. Hope you're husband keeps improving and manages to get on top of his chest infections n pneumonitis. Sending healing prayers and wishes back at you.

[WineWhiskeyandme]

Hi Nairnite,

I was diagnosed with NSCLC in Oct 2019. I have been on immunotherapy every 3 weeks now for 3 years and no side effects and they and I are happy to continue with it.

[Nairnite in reply to WineWhiskeyandme]

Hi WineWhiskeyandme,

thanks for getting in touch, it's good to hear from someone who has experienced immunotherapy over a period of time and hasn't experienced any side effects, it certainly sounds better than further rounds of chemotherapy and it's associated side effects, if my scan results are good and the my oncologist is agreeable. Hope things continue to go well for you and your NSCLC is kept at bay. Sending kind wishes Nairnite

[sassassas in reply to WineWhiskeyandme]

That's really great to hear WineWhiskeyandme . Are you planning to continue with the immunotherapy indefinitely?

My husband is responding really well to his immuno (he has atezo and avastin every 3 weeks). He was diagnosed 18 months ago, so he is coming up to the 2 year point when he and his oncologist need to decide whether to carry on or not.

I'd love to hear more about your decision making. Are you planning to continue with the immunotherapy indefinitely? Was it easy to get approval to carry on beyond 2 years? Are you on pembro or something else?

thank you!

Sarah x

[WineWhiskeyandme in reply to sassassas]

Sarah, I should have added that I have stage 4 NSCLC cancer and put on Pembo from the start . We were told it was the best option for me (18 to 36 months) if it worked . So far at every 3 monthly review the answers have been its working for you so we'll carry on. I have not had any discussion about what comes next as we did not think I would get this far. I hope to be able to stay on immunotherapy as long as possible as I don't like or think there are any real alternatives and its more about quality ( I'm still able to enjoy wine and whiskey) . There was no talk about needing approval to go beyond 2 years but the system in Ireland may be difficult then the UK. The very best of luck to your Husband and hopefully he can carry on with the immunotherapy.

[sassassas in reply to WineWhiskeyandme]

Thanks for taking time to reply WineWhiskeyandme

Its similar for my husband - stage 4 NSCLC - but chemo and immuno together for the 1st 4 treatment cycles, then just the immuno since then.

It must be different in the UK and IE - good that you don't have to make that decision when its working well.

Keep enjoying the wine and whiskey 😀