Cessation of Pembrolizumab immunotherapy after two years

[Manninmaid]

Just wondering how others are faring who have completed the 2 year maximum treatment period on Pembrolizumab? I have the PD-L1 expression at only 5 percent but am fortunate that my disease has remained stable whilst on Pembrolizumab. I had an appointment with the Oncologist yesterday and I am due to have my last treatment on 11 December. In relation to the possibility of continuing on the treatment privately beyond that date, he advised that after 2 years on the treatment the T-cells have been reprogrammed so the treatment, in effect, continues working beyond the two years and there is in fact doubt as to whether it is actually needed for more than one year. He also pointed out that the longer term implications of immunotherapy are unknown as it is relatively new but could include a greater risk of developing an autoimmune disease. Given his explanation, I now feel more relaxed about the treatment finishing, but would be interested to know how others who have already finished treatment after 2 years are getting on. Any feedback would be very welcome.

Best wishes and positive thoughts to all of you living with this disease. 🌻🌺

[RoyCastleHelpline Partner Ask the Nurse Roy Castle]

Dear Manninmaid

Thank you for your post and am sure this may reassure others who have been enquiring about the use of Pembrolizumab after the 2 years.

All the very best

The Roy Castle Support Team

Ask the Nurse - 0800 358 7200

[Clem1]

Hi Manninmaid have been completed 2 years 6 months ago had 2 scans & remains stable they still say pembroluzamab stops after 2 years & yes I signed petition. Good news is I have still got side effects which means my immune system is still fighting I hope you have good results cheers Clem1

[Manninmaid in reply to Clem1]

Thank you so much for your reply Clem1. That is really good news. Long may you continue to have a positive response. 😊

[Poppapie in reply to Clem1]

Hi Clem1 this is good to know thanks for posting. PoppaPie.

[NRd19 in reply to Clem1]

Thats good news my dad has just stopped his treatment end of immune therapy two years has gone really fast hoping it still stays inactive xx

[Poppapie]

Hi I’ve not reach the two year point yet but I’m intrigued into where it goes from there. I’m about 6 months behind you in my treatment. Keep posting please in hooked on your post 🥰. Jp

[Manninmaid in reply to Poppapie]

Hope you are doing well.

I have actually managed to continue on Pembrolizumab funded by BUPA. Since soon after being diagnosed, in addition to seeing my very good Clatterbridge Oncologist, I have had private appointments from time to time at Leaders in Oncology Care in London. The Oncologist I see there advised me that he has a small number of other patients continuing on treatment beyond two years funded by BUPA and, as I have so far had such a positive response to Pembrolizumab, he was happy to recommend my treatment continuing too. Obviously this is with the awareness that, as this is a relatively new treatment, the optimum treatment period has not yet been established. Hence it may be that the optimum treatment period will yet prove to be the two years for which the NHS funds the treatment, or less, given there is evidence of it continuing to work after treatment stops. So I may not actually be gaining any additional benefit. However, having paid into private medical insurance for 28 years, I was prepared to take this chance and continue in the hope it may make a positive difference. Having said that, due to unforeseen circumstances, I have not actually had any treatment for almost 12 weeks. Although hope to do so this week.

Hope you are coping ok with the challenges of lockdown and that this hasn’t disrupted your treatment.

Sending positive thoughts and best wishes.

ManninMaid 💕x

[Poppapie in reply to Manninmaid]

Thanks 🙏. I’ve not had any change in treatment it all just continues every 6wks. Glad that you’re ok and continue to live with this enemy within us. 🥰. Positive attitude like I have makes things easier I think. 💕

[Manninmaid in reply to Poppapie]

Definitely! Keep smiling and hoping for the best! 😊

[Poppapie in reply to Manninmaid]

You too hun 😘 PoppaPie xx

[NRd19]

Hi my dad has just had his last treatment after being on immune therapy for two years for lung cancer he’s doing extremely well and he’s fighting fit but my worry also is that how long off treatment can it stay inactive, wish we knew more or even give the chance to go back on it if it does start to spread again xx