What is everyone’s experience with immunotherapy?

Hi everyone, my dad has had 2 cycles of chemo and the 3rd one postponed until after a ct scan this Monday to check if the chemo is working or not. Doc says if it’s not working she’ll stop chemo. He was told he couldn’t get surgery or radiotherapy as a treatment option as the tumour is too big (stage 3 non small cell lung cancer). No one has mentioned immunotherapy so far. Keen to hear of others experiences with immunotherapy, are there tests for it? Is there a sequence of events that need to happen before you’re considered for it?

I plan to ask about it when we next meet the doc next week too.

Thanks in advance!


  • Hi Natalie ive been on pembrolizumab since December 20 i find it ok, thr side effects vary and it can attack your organs my thyroid was destroyed by it but with tablets its fine now. I also had high dose radiotherapy every day for four weeks that was also ok and the immunotherapy is keeping the cancer in check and for me two of my three tumours have gone, the thing with cancer is everyone is different and we react to treatments differently so we can only jump on the ride and hold on .

    Wishing you all the best 


  • Hi,I have stage 4 NSCLC.

    Just chiming in to say that my experience with immunotherapy was not so good . I had to stop, because it was causing respiratory problems.

    Previously, I was on a combination of carboplatine-alimta-pembrolizumab which was working well, but unfortunately the side effects were too severe. I am now treated with just the ALIMPTA (chemo) every 3 weeks and have just had my 3rd treatment. Seems to be ok so far.

    As fsake says we all react differently to the different treatments. Good luck with your dad.

  • Hi I have stage 4  incurable started off on immunotherapy had it stopped as it started attacking my liver like a cancer Neen 8 months on steriods rollercoster always flatting up ended up in hospital on a liver drug just now back to normal after a long hard nineonths had chemo radiotherapy doing well now xxxxx

  • Hi my mums on her third dose she having it weekly for 8 weeks, she has 6cm nhl tumor in lung and nodes etc, so far so good she is 76 she just feels drained let’s hope it stays that way everybody reacts differently 

  • Hi

    I was on keytruda 2years had few side effects although did cause problems with liver so was put on high dose steroids for 3months then went back on to finish 2yrs that was Sept 20. Had CT yesterday been called for mri of liver and pancreas today so a bit worried its spread now


  • Oh dear, there's a few negative experiences here. My heart goes out to those who've had this rug pulled out from under them. There but for the grace of God go I.

    To redress the balance a bit, my experience has been more positive. I started off with a brain tumour giving me the first symptoms of something not quite right. After that got cut out the analysis indicated primary lung cancer, confirmed by a whole battery of scans and tests spread over a few days. I tested 80% suitable for pembrolizumab and my prognosis got extended from the initial 5to6 months to maybe years.

    So here I am, more than four years later, and still feeling pretty good.

    First question I asked my consultant, even before I tested suitable for immunotherapy, was "What can I do to improve my chances?" To my surprise, not many people ask that - they should. Every 3 weeks when I rolled up for my infusion I had more questions prepared to ask, a bit more feedback to give. I look at my scans, I read the scan reports on "Patients Know Best", I monitor my blood tests.

    Side effects? Of course. What improved them was trial-and-error with the diet, with the shower gel, with pretty much every aspect of my life - I just kept on at trying to reduce or manage them. Sometimes you just have to take it, but not always. Nothing too untoward, mostly they are now minimal-to-none, and my bloods continue to trend pretty flat. I've got off pretty lightly.

    Kind regards

  • Hi, I agree with Steve, more positivity needed.

    I was diagnosed nearly 3 years ago ( NSCLC) had upper left lung removed ,initially stage one, but sadly quickly progressed to stage 4 . Started. Immunotherapy ( pembro) and stayed on it for 15 months until side effects ( colitis and arthritis like symptoms) halted its use.

    The good part of this story is being able to say I have been NED for the past year.

    Even though I never had the recommended two years use, the immunotherapy did what it was supposed to do.

    So, encompassed within negative stories of immunotherapy there are also a lot of positive ones as well. 

    I hope all of us, fighting the cancer beast , get good results

    I wish everyone all the best within their journeys. 

    Learn from yesterday, live for today, hope for tomorrow. The important thing is not to stop questioning (Albert Einstein)

    If you can’t fly, run, if you can’t run, walk, if you can’t walk, crawl: but by all means keep moving (Martin Luther King) 

  • My hubby is about to have his last prembo treatment which will be the full 2 years and apart from a few side effect (nothing too horrid at all) everything has shrunk or vanished. For him he is one of  the lucky ones who it really has been the miracle drug so far. He has stage 4 lung cancer that was also in his spine, 2 years ago his prognosis was very poor indeed and now we don’t ask but he is here and living a very full life, working, playing and nothing stops him.

    We know not everyone is so lucky but sometimes hearing a success story helps others.

    good luck to everyone on this journey not one wanted to be on xx 

  • I am stage 4 NSLC ...with mets. Diagnosed 2015!!!! On immunotherapy..still alive and well!!!

  • Steve, can I ask how long you can stay on immuno if paying privately…. Is that an option for some people??