Mum bedbound - oncologist refusing immunotherapy

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Hello, I’m posting on behalf of my mum and would really appreciate hearing from anyone with similar experience.

Her diagnosis and treatment were significantly delayed, and by the time everything was confirmed her condition had deteriorated badly. We feel she was let down by those delays.

She is currently bedbound, which is why her oncologist is refusing immunotherapy. However, she is eating well, mentally alert, and engaging, and her being bedbound feels related to disease progression rather than overall frailty.

Has anyone had experience of receiving immunotherapy — or a loved one receiving it — while bedbound or with a poor performance status? Or of an initial refusal being reconsidered?

  • Hello  

    I am Brian one of the Community Champions here at Macmillan. I have just noticed your post has gone unanswered. I have a couple of suggestions for you:

    * You don't say which cancer your mum has. The community is divided up into cancer specific groups. If you let me know the type of cancer mum has I can direct you to that group. There may well be someone with experience there who can answer your question.

    * If you disagree with mum's oncologist - it is possible to request a second opinion and here's the information you need:

    Getting-a-second-opinion-about-your-care.

    I hope the above helps.

    Best wishes - Brian.

    Community Champion badge

    Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm

    Strength, Courage, Faith, Hope, Defiance, VICTORY.

    I am a Macmillan volunteer.

  • Thank you so much for getting back to me

    my mum has kidney cancer spread to the bones which makes mobilisation difficult due to the pain

    she can sit on side of bed and wash, is eating well etc

    im just heartbroken theyre leaving her

    it feels so cruel when thet have medicatiob that could help

  • Hello  

    I can understand where you are with this - it's wrong if there is treatment available and it's not being given. 

    It would be a good idea to join our kidney cancer group where you will be with others in the same or similar situation. Here's the link you need:

    Kidney cancer forum 

    Once you click on the link I have provided and the page opens up, click on "join" on the black banner at the bottom of the page. You can then introduce yourself in the "New Here - Say Hello" section. You could either copy and paste or repost your original post there. I am sure you will have plenty of support there.

    I wish you well moving forward - if you need any help in navigating the Community - please do get back to me.

    Best wishes - Brian.

    Community Champion badge

    Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm

    Strength, Courage, Faith, Hope, Defiance, VICTORY.

    I am a Macmillan volunteer.

  • Thank you so much