Immunotherapy

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I finished my radiotherapy on 4th October and had a CT scan last week. My primary tumour has shrunk by half but unfortunately the lymph nodes are bigger which I wasn't expecting. Without a biopsy the oncologist can't say if this is because of the Radiotherapy side effects and inflammation or if it's the cancer and she is not keen on this as wants to start immunotherapy asap. I should find out this week when that will be. It will be a drug called Pembrolizumab. I will have it every 6 weeks for 2 years. I am dreading getting lots of side effects or not being able to tolerate it. Has anyone else had any experience with this particular drug or any tips on immunotherapy in general. If this doesn't work I am just so scared that there is no other options available.

Thank you 

  • Hi I have stage 4 lung cancer and slight spread into my spine

    Imunotherapy I have been on about a year the one you mention,it has stabilised my growth not any further and slightly reduced its not possible complete remission but being held back and stable very little side effects but groggy and fatigue but for me it's a wonder drug,hope you have the same result,pain under control 

    Regards 

  • Thank you so much for the reply. That certainly gives me a bit of hope. I really hope you continue to feel the benefit from it. Take care. X

  • Hi,

    When I was on Pembrolizumab it was every 3 weeks. That probably reduced the side effect severity, compared with a 6 week loop, and made it more tolerable. The side effects, the ones we get and how badly, are different for each of us; mine were manageable and some people get next to none so suck it and see. If you Googled for the side effects you saw that Merck list all the possible ones. That's only to cover themselves just in case they get sued; it does not mean you will get any of them.

    I started Pembrolizumab after I had my secondary brain tumour removed and went straight on to it to treat my stage 4 lung cancer. The biopsy from my secondary tumour showed I was 80% suitable (more than 50% is good.) That was enough to pull me back from stage 4 to stage 1, I was allowed to have a lower right lobectomy, and now I'm nearly 2 years cancer-free.

    kind regards
    Steve

  • Thank you so much for your reply and I am so pleased that it has worked so well for you. I am trying to stay positive and your wise words have given me new hope. Stage 4 to stage 1 is amazing. Take care. Xx

  • Thank you for sharing. My husband starts immuno soon ( st 4 lung spread to spine etc too) so good to know it helps people

  • Morning Rainbowrobins I have had two cycles of pembrolizumab and side effects have been minimal. Apart from mild constipation I am also on a clinical trial. I have pembrolizumab every 21 days and everyone has a different regime. What I would say is that I think it’s definitely worth having! Good luck with your treatment and hopefully you will feel better. Enjoy your day and stay positive xx

    Sharon xx

  • Thank you Sharon. I am so glad that your side effects have been minimal, that is what I am hoping for. Just really keen to get started now but scared about the long road ahead. Take care.  X

  • Hello... I've had two doses of this drug, and found side effects ok; mostly tiredness and woolly headedness! The first dose was 'worse' than the second but I was not in the best of  states to receive it, having had a pulmonary embolism and no appetite, so not eating. The last dose 12 days ago was fine; minimal side effects for me. I have four more cycles and hope they continue to be as well tolerated. Hope this helps... AVN

  • Thank you so much for your reply. I am so much more positive now reading how everyone has found it. Hopefully it will work out for me too and I can continue with treatment. Good luck with your remaining cycles. X