Hello. I had my final immunotherapy last Friday and have been told hopefully it has trained my immune system to reject any further growth. I can't help feeling vunerable  as I have been so well for 2 yrs whilst on Nivolumab.

Whilst on the treatment I felt I was being proactive but now have an empty feeling inside is the only way I can describe my feelings. 
 

l will follow this link with great interest.

Hi Sheilamary,

Send me a friends request and I will message you directly. 

Regards 

Dan

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. 

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

Steve, thanks for your reply.

I'm so grateful that you've shared your experiences on the forum. It's a real lift to have some encouraging stories now and then. More power to you.

I only found out on Thursday that I had "extensive recurrence" in both the lymph system and bones. The oncologist didn't enumerate the PET findings, he just gave me the results on paper, a long list, (hilariously titled "Final Report"). This is all from an incidental finding of lung lesion and one dodgy node in January and then lobectomy surgery 29 March. There were no other signs on a pre-surgery PET scan in February, but now only 4 months later I am a starfield of bone metastases and lymph nodes. They have only looked from base of skull to upper thigh so I have to trust that my brain is being as dense as usual and not allowed anything in.

I hope Pembrolizumab is going to be a game changer for me because otherwise the future is looking rather bleak.

I was also very fit (for my age, late 60s). I was training in martial arts and teaching it up until Christmas 2020.  I do think that helps, and I've never been a smoker. Pretty unlucky on the lung cancer front, eh?

Sorry for rambling.

Hello all, I'm encouraged by this chat. My husband (59 and a non smoker) was diagnosed stage 4 lung cancer in December 2020. He had a course of chemotherapy alongside immunotherapy and continues on immunotherapy now I guess until December 2022.

he has responded well and I am saddened and angered by the two year limit. I'm not sure what I can do. The oncologist basically told us his life expectancy is two years so I wasn't feeling hopeful. At least now I understand that he could continue to do well without it if his immune system has learned what to do. Encouraging stories and good to know we're not alone in our worries 

Alison

Hi everyone,

I've just come across this thread and wanted to also say that my mum started immunotherapy in December 2019 so we are coming up to the 2 year point. At the time the doctors told me they hadn't got anyone to the 2 year point which I thought well there's a first time for everything!!

Mum is in her 60s and keeps really well on the treatment, she can live her life pretty normally and doesn't have too many side effects. This is why I'm worried about the 2 year max, as I'm not sure where we go from here. The consultant has spoke about chemo or radiotherapy but worried these may have worse side effects and limit mums ability to live her normal life.

Has anyone been able to get their consultant to extend their treatment? I'm just trying to figure out options in advance of December, and come up with some sort of plan. If anyone could give any advice that would be great, but so glad just to know I'm not alone in this.

Thanks

hi  cmisk 20, sounds like your Mum and me are pretty much in same situation. Can you send me a friends request to have a chat? 

hi  cmisk 20, sounds like your Mum and me are pretty much in same situation. Can you send me a friends request to have a chat?