Any advice or help please

[ginja3]

I had left lung removed 2yrs ago, told last nov, that cancer was now in right lung.was put on pallative care? No follow ups only phone calls fortnightly.But found out that the drug Pembrolizumab is working very well to extend life especialy for lung cancer patients.Has anyone else heard of this? and how do i go about getting it.any help would be appreciated Many Thanks Ginja

[RoyCastleHelpline Partner Ask the Nurse Roy Castle]

Hello Ginja3,

Pembrolizumab is an immunotherapy treatment that can be used to treat only some types of lung cancer it works by switching on your immune system to recognise and kill certain types of cancer cells. When you had your original diagnosis the biopsy should have been tested for PD-L1 this is a check point inhibitor which indicates if this treatment would be suitable.

Cancer research have a very good article here which explains in detail about targeted and immunotherapies and why they are not suitable for every type of lung cancer.

cancerresearchuk.org/about-...

If you would like to discuss anything, 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

[Elt79]

Hi - iI was diagnosed Stage IV NSCLC with brain and adrenal mets in October 2018, was also put on palliative care. My prognosis was poor - however radiation treatment to brain mets and 2 years of Pembrolizumab- finished November 2020 and have been living well since. I think the word ‘palliative’ implies one thing but in reality means we can’t be ‘cured’ but we can live with this disease and, whilst we don’t have a choice about this it’s is possible to live a fairly good life. I have had to accept this is how my life is from then on - I do have a positive attitude and have to say also Roy Castle staff have helped me enormously on this journey, particularly through Covid and shielding, I wish you the best of luck going forward and pray that Pembrolizumab really works for you! x

[sassassas in reply to Elt79]

Hi Elt79

I'd love to know more about your experience since finishing your two years on Pembro. My husband has been on Tecentriq for 18 months now and its working well. We'll be facing the 2 year mark soon and thinking about the prospect of coming off it.

Its obviously going well for you still. Are you having any treatment now? How often are you scanned?

thanks, Sarah

[Elt79 in reply to sassassas]

Hi Sarah - I’m not on any treatment since I stopped. I was scanned 3/4 monthly CT and Brain MRI and I had another PET scan late last year. Much to my surprise in May 2022, my last clinic appointment with consultant, was told no scans or clinic appointments for a year! So took me a while to process as scans were like my ‘comfort blanket’. Obviously if I feel anything changes I can contact them but must admit it scared me a bit - but 🤞🤞things continue to stay NED. x

[navitas in reply to sassassas]

My Dad had 13 months of Pembro starting in March /April 2018, no chemo first as he was stage 4. He had side effects and his colon was being attacked by his immune system so treatment was stopped early. He really thought the cancer was going to come straight back but there has been no development at all since. It still seems to be doing it's job years after stopping. He still has quarterly scans but no movement. I'm on the forums I guess looking for others who are having the same success as it feels like a while since I've looked around.

[sassassas in reply to navitas]

Thanks @navitas, that's really great to hear about your Dad. Thank you for posting - it's a real boost to know that there are people out there who have stopped treatment but it continues working. x