Immunotherapy 2 year limit.

FormerMember
FormerMember
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Hi everyone,

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.

  • FormerMember
    FormerMember

    Please check lung group as you will find more info on  immunotherapy, i have sclc so i cant have it.

    Ray

  • FormerMember
    FormerMember

    Dear I noticed there had been a petition raised earlier this year in relation to the dilemma you have raised. In it it quotes the nice guidelines which seem to correspond with what you are saying. This also seems to be backed up on the Roy Castle foundation website. So it seems this is definitely something lung cancer patients feel needs addressing. I have blood cancer where the use of drugs is quite tightly controlled and you have to wait to have things in a specific order, also controlled by nice, so I am sympathetic to your situation.

  • Hi and welcome to the Online Community, although I am sorry to see you finding us.

    Can I direct you to this link to our very supportive Lung Cancer group as this will open up your concerns to a wider audience who know exactly what you are going through at the moment.

    Just follow the link I have created then hit the ‘Join This Group’ tab just under the main group name, then go to the 'Start a Discussion' tab and set up your very own Discussion and introduce yourself to the group and ask your questions.

    We also have our ‘Ask an Expert’. section where you can post questions to our mostly Volunteer Experts but please allow 2 working days to get a reply.

    All lhe best.

    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

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  • FormerMember
    FormerMember in reply to FormerMember

    Thanks Ray have joined lung group.

  • FormerMember
    FormerMember in reply to FormerMember

    Thanks Jane, 

    Sorry to hear of your situation, hope you are doing well, thanks for taking time out to reply. I have read the NICE guidelines and the 2 year limit is basically only advised by the pharmaceutical companies to make the treatment cost effective to NHS England. There is no definitive clinical proof that stopping immunotherapy after 2years provides the optimum benefit to the individual patient. Just think it's terrible that clinicians are having their hands tied by these guidelines rather than being able to treat patients as they see fit. My partners consultant is happy to keep her on nivolumab for as long as she is tolerating it, but due to funding he has no choice but to stop. X

  • The challenges can truly be geographical and a touch of a post code lottery.

    6-7 years back I was on a Lymphoma drug that was £80 per day and it was only through the persistence of my consultant that I got it.

    I wish you all the best in pushing the systems doors 

    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

    Community Champion Badge