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

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 are you saying that you've been in immunotherapy beyond the two year limit? Thankyou 

Hi Amanda,

This Tuesday just gone (15 March 2022) I had my 68th infusion of Pembolizumab/Keytruda.

I've been on this immunotherapy for a shade over four years now. Pretty good going for an initial prognosis of 6 months from a diagnosis of stage 4 NSCLC. Minimal side effects - I've been lucky enough to have years to trial-and-error ways to minimise or offset them.

By the end of two years I was stable, so theoretically I could have chanced coming off the treatment. On the other hand, "if it ain't broke don't fix it" and I was tolerating it way better than most so my consultant kept things going. Lots of Covid stuff at the time, too, so I'm guessing the "do no harm" option was also the easiest and safest.

While the primary tumour looks probably reduced to scar tissue (can't really tell without a biopsy) there is a very tiny secondary area that is growing slowly that they haven't quite been able to identify - jury is still out on that one though I'm told radiotherapy (cyberknife?) is an ideal candidate to zap it so I'm not worrying.

As best I can find out, Merck set the 2 year limit to make the drug look more affordable, and that was the number of doses expected to reach stability anyway. Partly clinical, mostly financial.

kind regards,
Steve
 

Thankyou so much. Which area do you live. Most information I'm been given is that treatment is for a maximum of 2 years. It's my mum that's on it, been a year now snd she's responding very well. 

Thankyou so much. Which area do you live. Most information I'm been given is that treatment is for a maximum of 2 years. It's my mum that's on it, been a year now snd she's responding very well. 

Hi Amanda,

I live in central London. (I can't say which hospital, that's against the rules here.)

The NHS here did all the initial scans - everything from brain down to whole body, more than one a day, took the best part of a week all told. I was well impressed. After the verdict came in I claimed on my health insurance for treatment.

Kind wishes to your Mum. They don't prescribe immuno unless there's a good chance it'll work (they have a test for it) so if she's done a year responding well so far it's pretty certain she'll be able to complete the full 2 year course.

kind regards
Steve
 

Thankyou. I'm hoping to find a solution for after the two years. Obv subject her coping okay. Have you any idea how much the treatment costs ? Thankyou 

Hi Amanda,

It's horribly, prohibitively, eye-watering expensive. The 200mg dose of Keytruda comes with a list price of £7k. Going private would mean adding on the cost of blood tests, nurses, facilities etc - I've no idea how much they cost. Multiplied by repeating every 3 weeks and it kind of mounts up over time.

It seems to me that given that only 1 in 5 patients are 50% or more suitable for the drug, and that not all of them are able to tolerate it well enough to do 2 years on it let alone even longer, I'd have thought I'm in a very small very lucky minority. If that's really the case, the two year arbitrary cut-off for NHS strikes me as unfair, to say the least, and not really as cost-effective as NICE pretends.

kind regards
Steve
 

Hi Amanda,

Quick update:

I checked my statements. A year's private treatment on Pembolizumab every 3 weeks plus blood tests, head+chest scans every 3 months, chinwags with the consultant, etc charged my insurance £109,993.46.

Not cheap.

kind regards,
Steve

Hi Folks

Thought I'd give an update since finishing my 2 years of Keytruda treatment.

Had my last treatment 23rd December, followed by a scan 22nd January this year. I really wasn't expecting there to be any change as scan was quite soon after treatment and I was right, there was no change I'm pleased to say, both tumours on right lung stable with lymph nodes barely noticable.

 I was back a week ago for my three monthly scan when I received the news that they've now found a 6mm nodule on my left lung. Been told not to worry it could be just an inflamation which could have disappeared by next scan which is booked for July. Let them know if I've any pain, weight loss etc otherwise just to keep next app for scan and followup.

I am so scared, worried as I never had any symptoms at all until pain before being diagnosed with stage 4 lung cancer in  December 2 years ago. They have mentioned radio therapy if it is cancer but nothing about being able to back on keytruda. I don't know what to do! Should I just wait until July for another scan or should I maybe ask to go privately for one before then?

Has anyone any advice please. 

So your tumours are stable and lymph nodes are happy? That's great.

I think this means you can consider yourself potentially at stage 1 - nowhere near the stage 4 you used to be and only "potentially" at that. Also, 6mm sounds really tiny - small enough for accurate measurements to be difficult as errors of observation will be of a similar order. I'm in the same place myself, it's just that I'm in "if it ain't broke..." territory so the keytruda keeps on coming. I did ask what would happen to me if I couldn't afford the premiums any more and the conversation turned to radiotherapy, possibly cyberknife.

I'm no doctor, but stage 1 NSCLC has high survival rates and can be removed by radiotherapy to leave all clear. If that's your worst case scenario it doesn't sound so bad. Fingers crossed it's only a temporary inflammation - at least you know they'll be keeping their eyes peeled for it and they'll have a plan for whatever happens.

kind regards,
Steve

Hi

Thank you for your positive reply.

I'm going to try to take on board your comments and try to look forward with a more positive attitude.