Hello Liz, 

You can find out more about how to add friends on the forum and use private messaging at the bottom of this page. 

I hope this helps!

Best wishes, 

Lucie,  Cancer Chat Moderator

Hello Lucie,I am sure I have gt it wrong but when I looked at the bottom of the page there were 7 categories including about our information and privacy but I was not able to find use of private messaging and how to add friends. I am quite sure it is me but would yu mind directing me again.

Thak you

Liz

Some good news, but brace for medical techno-babble...

The Journal of Clinical Oncology - published online before print April 19, 2021 by the American Society of Clinical Oncology - includes an article "Five-Year Outcomes With Pembrolizumab Versus Chemotherapy for Metastatic Non–Small-Cell Lung Cancer With PD-L1 Tumor Proportion Score ≥ 50%".

Just put the article title into Google - it's on pubmed.gov and ascopubs.org.

Basically the article has the very latest findings on long term outcomes for NSCLC patients who cease Keytruda/Pembrolizumab after the standard 2 year course. This is actually big news, because up to now nobody really knew for sure because it hasn't been in use for NSCLC for long enough.

The conclusions seem to be a bit fuzzy to me because some of the control group (on chemotherapy) were allowed to transfer over to immunotherapy and the PD-L1 score to get into the trial was only stated as being "at least 50%", which could have been more specific. (Your consultant should be able to give you a firm number on this, mine did.)

The good news is that after 5 years more than 4 out of 5 patients who stayed the full 2-year treatment were still alive. The full 15-page paper is available to download.

Ever the optimist, I'm looking forward to reading the ten-year outcomes update!

SteveP

Hello Liz, 

No problem at all. To make it easier for you, you can find on this page information about how to use private messaging and you can also read more here about how to add friends to the forum. 

I hope this helps and don't hesitate  if you have any questions about this. 

Best wishes, 

Lucie, Cancer Chat Moderator

Thanks Steve P for this. I'm just about to go  and try and down load this report. 

Hi I've just come across this page and your post as my 65 year old mother was diagnosed with stage 4 lung cancer last September. She did 4 rounds of chemo along side immunotherapy staring in December 2020 and her tumours shrunk by 90%. She's now on immunotherapy only and we did not know that it's only a 2 year thing. She has responded really well to treatment and now I'm so concerned that in December 2022 it will all stop. Both my parent are ill as dad had a massive stroke may 2020 and another one may ch 2021 and now after reading all the post on here I'm heart broken that treatment just stops. Please can you keep me updated if you find away to continue treatment. 
many thanks 

Leah 

Hi Leah

As you will no doubt be aware now, there are lots of us in this situation.

Unless consultant can offer a valid reason to continue with treatment I would imagine your Mum will be the same.

Not the outcome any of us want but hopefully in time this will change. Probably too late for me and quite a few others I'm afraid. Still, where there's life there is always hope!x

Thanks Steve for this link to information about outcomes after Pembrolizumab is discontinued.

I'm about to start my course of up to 2 years, for which I am very grateful and cautiously optimistic. My PDL1 tested 80% and I've been told that a high score has a better chance of effectiveness, though I know there's no guarantees.

It is a concern what happens after, if I get that far. I'm told it would be chemo next, which in my mind is like getting kicked out of a limo and put on a tricycle. However, if the effects of Pembrolizumab treatment continue for some time after it has been stopped, that would be fantastic.

As it's relatively new, I guess we are in the frontline of research. 

Hi EllJay

80% is a really good PDL1 result - same as mine. After 2 years my lung tumour had gone right down to what they assume is just scar tissue and the lymph nodes had all gone back to normal. I'd expect you to get a similar result if you can stay the course. The only reason I'm still on the drug is that there isn't enough long term survival data out there, so my consultant is being cautious. The good news is I'm one of the few people on it long enough to have time to experiment with offsetting the side effects - they can be reduced quite significantly.

SteveP