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
Hi nic1825. Sorry to hear that your mum’s cancer has spread, especially as it sounds like she was doing so well.
In the years that I have been on this forum, I have seen many people ask a very similar question. Unfortunately I have never known anyone to be offered immunotherapy more than once, and I have not heard of anyone being allowed to continue after the 24 months. Immunotherapy works in a very different way to chemo, as it tricks your immune system into fighting off the cancer cells. The argument is that after 2 years, your immune system is at the correct level to ward of cancer cells without continuing the treatment. I know that other countries do continue after the 24 months, but people come to the same conclusion when they have tried with the NHS, it is always a firm no.
It may be different for people on trials as Fsake has mentioned. A trial may be a possible option for your mum. Speak to your mums team about any trials that may be in your area.
