By the way, I had  > 50% PD L1 but have since learnt that patients with none or a very low level can respond and some patients with high levels don't respond. The NHS only consider patients with > 50% for NSCLC and my clinical trial was > 1%, personally I believe it should be offered as a first line treatment for everbody.

 Like you, my side effects were minimal and I also had a significant reduction  within 6 weeks of the first infusion. As you realise now, for those of us fortunate enough to get a significant response, this drug is a game changer.

Hi Maurice

Thank you so much for all this info it is very helpful & reassuring that there is someone else out there in the same position! 

My cancer is stage 4 Metastatic so the condition slightly different from yours, however have you been treated here in Britain ? With regards to follow up treatment have you contrast ct scans or x rays ? They have only promised 3 monthly x rays and not scans because of toxicity do you feel this is true or government money issues  ? Like you I have responded so well and I have lost 70% of my tumour also. So pleased for you that you have continued to be stable.

My follow ups are ct scans with the contrasting agent every 3 months. Whilst too much radiation is not recommended, the alternative is not an attractive proposition. Yes, I am now consulting a doctor on the NHS but he is constrained by the guidelines from NICE. He points out the potential benefits from discontinuing treatment, toxicity etc. but does not disagree that the whole thing is about money.

I do not continue follow ups with the clinical trial clinic on the advice of my attorney. The lead investigator at the clinic considers it in my best interests to discontinue treatment yet I have never even met him. My onclogy professor who I consulted privately considers that his opinion is scientifically incorrect. I am disputing the decision by the trial clinic to not offer me further access, as if they believe that more than 35 cycles will not be beneficial then they are flying in the face of the clinical experts at NICE.

A nurse at the clinic told me that if in the case of disease progression the NHS would probably offer further treatment with immunotherapy on compassionate grounds. To my mind it makes no sense to try chemo after a result like this with immunotherapy. Whilst constrained by the guidelines from NICE a NHS doctor has the liberty to continue with immunotherapy if he believes it is in the patient's best interest.

All in all, in my opinion,  treatment is akin to using a cream to clear up a rash and then assuming that that after 70% of the rash has been cleared up the cream is no longer necessary as the immune system takes over. No more than an assumption.

I am very happy that you have had such a positive result and I will keep you posted on my experiences.

hi Juliebri, after reading your post over and over again I was keen to hear how you are doing? If you are still having good quality life? My mum is starting immunotherapy today also and like yourself has metastatic lung cancer, this is her only line of treatment offered to her also and I found it really inspiring to read you had minimal side effects and I hope and pray this happens for my mum. 

Kind regards 

Patsy 

Hi Patsy

So sorry not to have replied earlier as I have been locked out of my account until now !

I am sorry to hear about your mum being diagnosed with metastatic lung cancer, but happy to hear she has been offered Immunatherapy (Pembroluzimab) as her first line of treatment ! My treatment has been very successful for me and reduced my tumour to 2 cms fro 5cms and reduced all other in lymph nodes etc and now my cancer is inactive I am happy to say.

Is your mum only receiving the treatment for 2 years ? And where do you live ? It’s interesting to find out these things as to whether it varies all over the country .

i am just about to have my last treatment which is a bit daunting and feel like I’ve been given an extra 2 years and am not sure about the future but will try to maintain a positive attitude moving forward.

i hope mum is feeling ok after her first treatment ? And wish her all the best for the future.

Look forward to hearing from you.

Julie is 

I have my last Keytruda tomorrow 

it has sent my terminal peritoneal mesothelioma 

into remission this drug appears to be amazing 

given to the right people by the right people.