Extending the two years on Pembrolizumab

[Manninmaid]

As far as I can see the last posts on the above subject were 8 months ago at which point there was a petition being drawn up and requests made to the RCLCF to take up the fight to get Pembrolizumab immunotherapy for lung cancer patients extended beyond two years. I have been on this treatment since December 2017 so would be due to stop towards the end of the year. I have BUPA health insurance which I am not using at present for treatment. As far as I can tell there hasn’t been any extension approved to the two years but wonder whether I may have missed something. If there hasn’t been an extension approved has anyone been able to secure additional treatment on Pembrolizumab using BUPA?

[Ollie13]

Hi Manninmaid

I was discussing this with my oncologist the other week and he explained that the nhs is still only got a licence to use pembrolizumab for 2 years. So not heard anything different also no new government legislation re this drug. 😔 xx

[Manninmaid in reply to Ollie13]

Hello Ollie. Thank you for letting me know. This is very disappointing. I suppose it all comes down to cost. I suspect there are a few of us approaching the end of the two year period or who have already reached it. My oncologist advised that it was thought that at 2 years a patient’s own immune system could possibly have been trained to remain in ‘overdrive’, however this treatment hasn’t been in use for very long so there must be a lot of unknowns. Would be interested to know how those who have stopped treatment after two years and are just being monitored are getting on. Wishing you well with your own cancer journey. x

[J101 in reply to Manninmaid]

Non sure if anyone else is aware, but for Melanoma, immunotherapy on the NHS is indefinite

[Manninmaid in reply to J101]

I have recently written to NICE querying this and asking about the outcome of the review on the timescale for pembrolizumab scheduled for January 2019. Awaiting a response. Will post the answers received on this forum.

[pembro1]

I finished 2 years in January and now now just being monitored. The side effects are reducing but I still have some skin rash which I take as a sign and that is it is still working. I think one of the problems is no-one knows and there is also the cost element.

[Manninmaid in reply to pembro1]

Thank you Pembro 1. Hope you find it continues working. Glad the side effects are reducing. Keep well😊

[RoyCastleHelpline Partner Ask the Nurse Roy Castle]

Dear Manninmaid

We recognise patients who are coming towards the end of their two-year immunotherapy treatment period may feel anxious about their future. Immunotherapies are still a new way to treat lung cancer and the data about them is still growing. However, current evidence suggests that stopping immunotherapy after two years does not stop the patient’s response to it. This is because the immune system becomes re-programmed to better recognise cancer cells. We have seen this when speaking to patients who have completed their course of immunotherapy and continue to enjoy life after their treatment has ended. As more information becomes available, we will continue to speak out for people with lung cancer to ensure they receive the best treatment and continue to live well with lung cancer.

All the very best

The Roy Castle Support Team

[J101 in reply to RoyCastleHelpline]

Hi Roy

Could you please shed light on how come immunotherapy for Melanoma is indefinite and for lung cancer it is only 2years ?

[Dl1977 in reply to RoyCastleHelpline]

Sorry but there is also evidence to the contrary, if you read the NICE guidelines it states that the optimal treatment duration is unknown, and more data will be available in 2 years. That was over 2years ago it's guidance was to be reviewed in Jan 2019, but to date there is still no update, why? The real reason is cost, NICE only accepted the treatment model if the pharmaceutical company implemented a 2 year stopping policy that was deemed to be acceptable to both patients and clinicians. I have to spoke to a lot of patients and clinicians and I have found that it is not acceptable to either. You can not put a blanket policy on a treatment like this, surely a fit and healthy 45 year old , may gain more benefit from longer term use, than maybe someone in there 70's. There has not been enough research into how to different subsets of patients benefit and how long they should continue treatment. As a lot of people have asked on this site if your immune system is supercharged by immunotherapy why is that different in melanoma? I asked you this question and you sent me a link to a melanoma website. I'm sorry but I don't think this is good enough, and I don't think you should be peddling out the NICE guidelines on this issue, without giving people the full facts they are asking for. How long must people wait for new evidence and data become available? I'm sorry but stage 4 cancer doesn't give people the luxury of sitting back and waiting for NICE to work out if it is cost effective to save their lives! I really feel that charities like yourself should be pushing this issue, as I have found a lot of people on this site in this horrible position of havi g their treatment stopped. Could you tell me exactly what the rclcf is doing in respect of this issue?

[Manninmaid]

Thank you so much for taking the time to respond and for this helpful information:

Best wishes Manninmaid