Pembro/imunatherapy

[Clem1]

Hi my name is Colin i was diagnosed with stage 4 nsclc a year ago & was lucky enough to qualify for Pembroluzimab as a first line treatment due to 100% PDL1 marker. Been having good results, but showing concern for those coming upto their 2 years as 2nd line patients with good results being told they will no longer receive treatment of Pembro as NICE will not fund after 2 years, apart from financial reasons does anyone reading this no of any good reason why this should be. Cheers Colin

[RoyCastleHelpline Partner Ask the Nurse Roy Castle]

HiColin,

It's good to hear that you have had good results with Pembroluzimab so far.

According to NICE there is uncertainty about the long-term treatment effect after 2 years. Although they acknowledge that there are ongoing clinical trials which may reduce this uncertainty. NICE acknowledge that the experts state that in clinical practice, the decision to stop treatment would be made between the clinician and the patient, but the number of patients likely to have treatment after 2 years would be small. They also state that a small proportion of patients who stopped treatment would be followed up with the possibility of restarting treatment depending on the clinical circumstances of the patient. You would need to discuss this with your oncologist. See attached link

nice.org.uk/guidance/ta428/...

Kind regards,

All the team at theRoy Castle Helpline

[Clem1 in reply to RoyCastleHelpline]

Thank you 🙏

[MH1954 in reply to Clem1]

Hi clem

There is a lot of discussion on the Macmillian site under the lung group under the heading immunotherapy as a few members on there have come to the 2 year mark or are about to reach it

They have all asked their oncologists what happens after the 2 year mark is reached and the standard answer is your immune system should be able to carry on fighting the cancer, on asking the question of what happens when and if progression takes place and at the moment the answer seems to be is they will go back on Chemo

But sadly if you look further into this there is a financial element into their 2 year decision

We have found that NICE has said that any nhs trust who keep their patients on Pembro over the 2 years or restarts treatment again after 2 years will not be allowed the funding so whichever nhs trust you are under they would have to fund the full cost of treatment for Pembro

Which no nhs trust could afford

I am on Atezolizumab a new immunotherapy for non small cell and again only became available when nice had agreed a discount price for it and can only stay on it if there is no progression and only for 2 years

Hopefully as more data come through in the future things may change but at the moment nice are basing the decision on the available data they hold and the cost would have to come down significantly for patients to be able to access treatment at a later stage if there cancer progresses

Margaret

[Pembro72 in reply to RoyCastleHelpline]

Hi, it isnt up to your clinician . I have talked to all parties about this. Not in control of your oncologist. Maybe be easier if it was. But currently it is a flat no. Because of NICE/NHS 2 year agreement. I am trying to challenge this as we speak.

Mick

[Pembro72]

Hi Clem.

I have been chatting alot on the macmillian site about this, as you probably have seen. I have my last pembro tomorrow. Also told i wont get anymore. I am working to change this . If i can. Its hard but have contacted NICE & Merck as well as groups in the States.

Ongoing at that moment, no idea if i will get anywhere but i not stopping . Will carry on till i know one way or another

[Clem1 in reply to Pembro72]

Hi Mick been following chats on McMillan like u trying other avenues cheers & good luck Clem1