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

My husband has been told that he can't have anymore immunotherapy due to the fact the 2 years are up , even tho his scans and blood tests have shown that the cancer has been holding fine, I'm so upset and don't know what else I can do , or even if there is anything else he could have to prong his life ? I really feel for everyone who's going through the same x

I requested an appointment with my Consultant to discuss "what happens next" when my treatment ends in December.

Arrived at appointment only to find it was with a Doctor I've never seen before!

Long and short of app was that it appears that because it's really by way of a side effect that this treatment is given to us and that trials were held for a two year period that this is all the  NHS will pay for. I think originally it's prescribed for some kind of skin cancer, but could be wrong.

I was told that after my treatment stops at the end of this year, they will still keep in touch and scan at 6 monthly intervals. Should I feel during this time any pain etc to get back in touch immediately to see what can be done.

They can apparently offer Chemo-therapy as an alternative treatment. My arguement against this is that if Chemo is of any use then surely as it is much cheaper, they would have tried this first. 

I just feel it's not looking good for any of us, unless you can afford to pay for this yourself. 
I feel so angry and let down that even though myself and others in the same situation are responding so well to this treatment we are basically going to die unless our own bodies can fight the cancer.

It's terrible because of funding , u can't put a price on life !!!   Its like a switch being turned off,  when the immunotherapy is clearly holding the cancer , I'm so angry and upset , my hubby is going to be seen every 3 months now , he was told that the immunotherapy stays in his system for a while , But how long is a while ? So I'm gonna be there in December to see the consultant n ask the necessary questions , he was told the news last Thursday n I had to be told the news from my husband, I at least thought they would of asked my hubby to bring me with him so he wasn't alone to receive news like that x

I really think what makes things worse is because so many of us are doing so good on this treatment.  I feel so well. I'm on miniumum pain relief with virtually no side effects. 

I know this is the wrong way to feel, but I can't help it - I sometimes wish I'd had a bad reaction to this treatment then the decision to stop it would at least be for a valid health reason rather than financial.

Bless you , but to sit back n watch your loved one deteriorate before your eyes , when it's about funding REALLY!!!  I'm really trying not to be upset and show it infront of my hunny bit it's sooo hard , as everyone going through this horrid disease,  tbh he's more worried about me , let's hope we can all.find some sort of comfort with each other during this terrible time 

My love to all.x

Hi 

i am in the same situation for my mum who is on pembrozimulab - have you had any progress in challenging this? 
 

best 

yona