Accessing second course of Immunotherapy

[nlg1405]

Hi all

I'm posting on here in the hope to find someone who has been able to access a second course of immunotherapy treatment.

My mum was diagnosed in 2015 with stage 4 lung cancer. She went straight onto chemotherapy which made her very poorly and didn't do much to her cancer at all. Her consultant then put her onto an immunotherapy trial and she started a course of Pembrolizumab. This worked wonders and shrunk her cancer by 80% in the first few months. Unfortunately, after about a year it had started to cause arthritis and by 18 months in, this was so bad the consultant decided to stop the immunotherapy.

She has been very lucky and up until last year was healthy with no change to her cancer. Unfortunately, it did spread however to her liver and pelvis. She started chemotherapy but again, this didn't do much at all. Yesterday, we found out she also has a tumour behind her eye.

She has asked several times about accessing immunotherapy again as this really works for her but she has been told that she cannot access it for a second time. Her argument is that she only received 18 months of treatment rather than the allocated 24, so shouldn't she be allowed the final 6 months. Immunotherapy did most of it's work on the cancer in the first few months before it started attacking her joints so just 6 months could be beneficial. Her consultant agreed but said his hands are tied, there's nothing he can do.

My question is, has anybody been able to access immunotherapy a second time and if so how did you go about it?

I have done some research and the NICE website states that "Pembrolizumab could still be made available on an exceptional basis" past the 2 years and Cancer Research says the same. Does anyone know what would count as exceptional circumstances? This is available over 2 years in other countries. She also had it under a trial so hasn't actually been funded for this treatment by the NHS. I have read about Individual Funding Requests but feel I need to do some more research before taking this forward with the consultant as he doesn't seem keen to look into it.

If anyone has any experience in any of this, I would be really interested in hearing it.

Many thanks in advance

[Cockailschemocancer]

Hi - I would be interested to know too, mine too stopped early but did wonders and I would hope it might be an option if needed later on! Good luck I hope you can get it approved x

[foodbankcupar]

I do not want to give you false hope but.I accessed immunotherapy after being on it for two years. Nivolumab.

I applied to go on the

Matrix trial. I had to travel to Glasgow for treatment.

Unfortunately I had to stop after three months as I received so many infections.

This trial was based in Birmingham I believe and only certain UK hospitals participated.

So possibly if there were any suitable trials

I wish you all that you could wish for yourself.

Regards

Kevin

I

[nlg1405 in reply to foodbankcupar]

Thanks Kevin, I have been looking up other trials and wondered whether this could be an option if my mum was eligible for it. I will carry on looking, thank you. Very sorry to hear you had to stop it early but hopefully just those 3 months had a benefit.

[Liampaul03]

Ask the oncologist to refer to Christie’s in Manchester

[RoyCastleHelpline Partner Ask the Nurse Roy Castle]

Hello nlg1405,

I think this would be something that your oncologist would need to apply for on your behalf, I have found some guidelines and information on Individual Funding Requests here which might be of interest to you.

england.nhs.uk/publication/...

If there is anything else you would like to discuss you can either email us at [e-mail] or call our free phone nurse led helpline number on 0800 358 7200 Monday to Thursday 0900-1700 and Friday 0900-1600

Kind regards

The Roy Castle Support Team