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Nhs immunotherapy funding

Kimkey
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I have stage 4 lung cancer which has been kept stable by maintenance immunotherapy. I have received this every 3 weeks for over 2 years with minimum side affects. I have scan every 3 months showing my tumour is stable and even shrunk by 5cm in my August scan. I was then told that I had reached the maximum funding that nhs would provide for immunotherapy and my treatment was stopped. I am absolutely devastated and feel totally disregarded being told I will still receive 3 monthly scans and telephone consultation but no treatment!!! I could accept my treatment ending if it was not working but am finding it very difficult to accept because of funding, is there any way I can fight thos and get extended funding?

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    I hope you don't mind me replying when I'm not a nurse. I just don't understand why they fund it for melanoma if it progresses more but not lung cancer. Is it not as efficacious when restarted on lung cancer?

    I'm so sorry Kim. I found this page on the Macmillan website which looks like it might have info that can help: www.macmillan.org.uk/.../what-you-can-do-if-a-treatment-is-not-available

  • Offline in reply to Lyns21

    Maybe your MP and a bit of publicizing your situation might be the way to go. 5 cm is a huge drop in size.

  • Offline in reply to Lyns21

    Thank you for your reply, I have just sent off an email to my mp, I am also very tempted to start a publicity campaign, to be honest my head is in such a bad place at the moment I just need to feel I am still fighting in some way, I will let you know how I get on with mp, once again thank you for taking the time to read and reply  

  • Offline in reply to Lyns21

    I am not sure if you got last reply but I have just emailed my mp. I contacted mcmillan but they just confirmed length of funding for this treatment, thank you for your reply, will let you know how I get on 

  • Offline in reply to Kimkey

    Good luck. Tackling NICE when you have sickness or disability is a challenge I wish you could skip but I'll keep track of this thread and see how you are doing x

  • Hi Kimkey and thank you for your post.

    I am sorry to learn of your situation. This must be a very frustrating and disappointing time for you.

    Immunotherapies are very new ways of treating cancer and the data about them is still growing.

    Immunotherapy is administered for a limited time, usually a maximum of two years. After this period, the treatment is discontinued. This can understandably be a very anxious and frightening experience, as it may feel like a successful treatment is being taken away.

    However, there is some evidence from other types of cancer, such as melanoma, that stopping treatment does not necessarily halt the patient's positive response. In some cases, the immune system becomes reprogrammed to better recognize and combat cancer cells.

    You have probably done this already but it might be worth speaking to your hospital specialist or specialist nurse (CNS) as they know your situation and may be able to offer you advice. We do have information on our website about ways to access treatment on the NHS that may be helpful to read.

    You may also like to read our Find a clinical trial webpage to see if there is a clinical trial using immunotherapies that you may be eligible to enter.

    I hope this helps a little and the links above are useful. 

    Please get back to us if you need any more information or support.  You may find it helpful to talk things through with one of the nurses on our helpline.  The number to call is Freephone 0808 800 4040 and the lines are open from 9am till 5pm Monday to Friday.

    Kind regards,

    Tina

  • Offline in reply to CRUK Nurse Tina

    Thank you for your information,  I will take a look at the links you have suggested 

  • Offline

    Many of these drugs are only licensed for use for a maximum of 2 years. If they stop working then even less.

    The cost of these drugs can be 10s thousands pounds per year. I am about to start a course of immunotherapy, the cost is estimated at £80,000 per year. just for the drug. That is without the clinical care dealing with side effects etc. Over 2 years say £200,000 the opportunity cost is 20 hip replacements giving 20 people a new lease of pain free  life against just giving one person, me, an extended life. There is just not unlimited money available.

    On the plus side I'm told that these drugs often continue to give a benefit after they are stopped by training your immune system to continue attacking cancer cells. Im hoping that this is the case both for you and me. I'm in the same boat so to speak, palliative care treatment and as such totally sympathise with your plight.

    Ed

  • Offline in reply to Farmer_Ed

    My husband had it for Liver cancer 2 yrs stopped he was fantastic on it no funding after two yrs tried him on tablets which he was unable to swallow had to go three time to have throat stretched as he has problems with tried soluble ones made him so ill and didn't do a thing so my husbands words let nature take its course all because of funding 

  • Offline in reply to Farmer_Ed

    My husband was the same 2 different. Sorts of immune through pick line washed out every week by district nurse then bloods every 3 weeks before treatment he was fantastic on the treatment then it stopped 2 yrs later tried tablets no good then in may got told mths now like sitting on a time bomb every body says how well he looks still got sense of humour at my expense but it's starting to make him weaker now.we will take each day as it comes told him he's got to still be here for our golden wedding in may next year because I want a big gold medal

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