Welcome to Cancer Chat Juliebri.

I'm really glad to see how effective the immunotherapy has been for you but can understand your concerns about this treatment coming to an end and not having the chance to access it again.

I've been looking through the forum to see if I could put you in touch with other members in a similar predicament and have found [@MauriceS]‍. He was able to have immunotherapy for his stage 3b non small cell lung cancer via a clinical trial and has also had positive results. His trial has finished now but like yourself, would like to continue with this treatment, so hopefully putting you in touch with one another will help you both at this time.

You're more than welcome to discuss your situation with our cancer nurses as well if you like. They're available Monday - Friday on 0808 800 4040 between 9a.m - 5p.m.

I hope this helps Julie and wish you all the best for the future.

Kind regards, 

Steph, Cancer Chat Moderator

I don't think my last post registered. I finished 35 cycles of pembrolizumab in November 2018 and have done extensive research on the subject. To sum up, the clinical experts that advise NICE have concluded that the optimum number of cycles 'remains unknown'.

The theory that the immune system becomes 'trained' is clinically plausible but I have found no clinical evidence to support this view.

I believe that it is more to do with Merck's marketing strategy, a cap on 35 cycles makes it a more attractive proposition to sell an extremely expensive drug.

Please contact me directly if you would like to compare notes.

Steph,

Thank you for highlighting this topic, it is extremely important to those of us who have completed 35 cycles and are denied further treatment. There was a petition to the government on this this and they were unable to provide an adequate answer.

Hi 

Thanks for coming back to me, you say your treatment finished in November 2018 how are you now ? Have you had 3 monthly scans or x rays and how effective was the Pembrolizumab for you ?

Hi 

What is Merks marketing ? Is this the company that produce Pembrolizumab? 

My last scan 3 weeks ago indicated stable disease. The pembrolizumab was very effective in my case, I lost about 70% of my tumour. It is difficult to be exact as the measurements included scar tissue and a PET scan 3 months ago clarified this so the tumour is smaller than the measurement. 

Yes  Merck manufacture the drug. The 35 cycle recommendation is based on a clinical trial comparing treatment with pembrolizumab a gainst chemotherapy which was supposed to run for 2 years (35 cycles). The trial was closed early as the pembrolizumab arm responded much better than those on chemo and they had to offer the chemo arm the option to switch to pembrolizumab. Nobody on that trial received more than 26 infusions and the average number was somwhere around 11 infusions.

NICE acknowledge this, however if Merck can market on  a ' recommendation' of 35 cycles it makes a more attractive proposotion to sell the drug to the NHS for example as they can put a ceiling on the cost of treatment. To echo NICE, nobody knows how many cycles is the optimum number,.

Another quirk is a patient with melonoma is not restricted  to 35 cycles, yes, it is a different cancer but the same drug that is supposedly not needed in lung cancer after 35 cycles as the immune system is trained'

I have been told by an oncology proffesor specialising in immunotherapy that the vchances of serious side effects are less than 4% and if you haven't had them in the 2 years you won't be getting any with further treatment. That contrasts with the opinion of my Dr at the trial clinic who used it as another reason not to offer me continued access as per my agreement.

I don't know how much detail you want on all this but the NHS won't offer further treatment as I have had 35 cycles even though not with them. It may be better to communicate privately suffice to say, I am currently in South America consulting a specialist lung unit hoping that keytruda will be priced accordingly for a poorer country and continue infusions.