My partner was diagnosed with stage 4 nsclc in October 2015. After unsuccessful treatment with chemotherapy she was referred to palliative care by her previous consultant. I went private to get a second opinion and found a great consultant who enrolled her on a early access to medicine scheme for immunotherapy (nivolumab) . She had 2 years on this scheme and responded amazingly with a considerable reduction in her primary lung tumour and brain metastasis. After this she received her treatment directly through nhs funding and nearly 2 years later she is disease stable and feeling healthy and well. At a recent consultation we were Informed that immunotherapy is only available for 2 years on the nhs no matter how well the patient responds to treatment. We were shocked to hear this as we were under the impression as long as my partner was responding to treatment it would be continued. But more shocking than this we discovered that even if her cancer was to progress once her treatment stopped, she would not be eligible for any further immunotherapy on the nhs, even though it has worked for her in the past. I find nhs policy on this matter absolutely crazy. That's why I am reaching out on this forum now to try to contact any patients in the same position to swap ideas with each other and get a movement going to try to change this policy. I look forward to your responses.
I'm very sorry to hear of your partners diagnosis. It's a very difficult time.
NHS is I believe the UK based public health system. CancerCouncil is an Australian based organisation, so you probably won't that many people who are based there as you would on website based in the UK.
If I've got this wrong, please let me know.
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