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Urgently seeking (private) Avastin prescription for Glioblastoma

KesterLeek
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Hi all,

My father was diagnosed with Grade IV glioblastoma, IDH-wildtype, unmethylated in September 2023. It has been controlled through a combination of immunotherapies, following Stupp protocol. Treatments have included dendritic cell therapy, oncolytic virotherapy, immune checkpoint inhibitors, radiotherapy, chemotherapy, bevacizumab (Avastin) and hyperthermia. None have had significant side effects. He has to travel to Germany to receive these treatments.

His prognosis is clearly deteriorating. We would like to get Avastin prescribed locally, which has helped significantly with symptoms in the past; the NHS cannot / will not provide this as is not in line with NICE guidelines.

What is the best / fastest way to get Avastin prescribed for glioblastoma in the UK? We are happy to pay for it but are unclear how to go about obtaining it. We would particularly like to get this sorted before Christmas in the hope of having one more nice Christmas together.

Many thanks,

Kester

  • Good afternoon Kester,

    Thank you for getting in touch and welcome to our online community, I hope you find it supportive. My name is Helen and I am one of the Cancer Information Nurse Specialists on the Macmillan Support Line.

    I’m sorry to read about your father’s glioblastoma diagnosis and he’s now showing signs of deterioration.

    It’s understandable you’re seeking information and guidance to get Avastin for him in the UK and ideally have a treatment plan before Christmas.

    I’m unsure if your father has a neurology oncologist in the UK. Usually, people will be under the care of an oncologist and if treatment isn’t available on the NHS, they can discuss alternative options on the NHS or under private healthcare.

    Accessing treatment on the NHS also depends on which area of the UK your father lives. For example, if he lives in England and a treatment is not available in the NHS, his cancer doctor may make an Individual Funding Request (IFR) to NHS England. Or if the treatment is a drug, they may apply to NHS England’s Cancer Drugs Fund.

    The following guides may be helpful for you as a starting point. They include getting a second opinion, what to do if treatments aren’t available on the NHS and paying for private care and treatment:

    Brain tumour charity – Navigating the healthcare system for the best treatment and care.

    Macmillan – What you can do if a treatment is not available.

    Cancer Research UK – Private cancer treatment.

    If you are looking to find a private consultant in the UK, The Private Healthcare Information network PHIN have a search tool to help find consultants by location and speciality. If your father is registered with a GP in the UK, they can help with a referral to a private consultant.

    It may be helpful to reach out to us for any further information and support. Often a two-way conversation helps us fully understand your current circumstances and gives you the opportunity to ask us questions. There may be other avenues of support we can help you with. It’s a worrying time supporting a loved one with cancer and we’re here for you too.

     

    I hope this information is helpful but if you have any more questions please don’t hesitate to get back in touch.

    Best wishes,

     

    Helen, Cancer Information Nurse Specialist 

     

    You can also speak with the Macmillan Support Line team of experts. Phone free on 0808 808 0000 (7 days a week, 8am-8pm) or email us. 

    Ref/HeP/KD

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