Repurposed drugs

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Can anyone point me in the direction of UK-registered doctors who believe in, and are open to discussions about researching and prescribing repurposed drugs (i.e. off-patent drugs for which a safety profile has been established but where efficacy, although evinced by “anecdotal” single write-ups in journals,  has not necessarily been through Phase 3 RCTs for oncology)?   

A close relative, who was deemed by the NHS to have >4 QUALYs two years ago, is now exhibiting stage IIIA endometrial cancer which was not eradicated by surgery earlier this year, and the NHS has, very gently, washed its hands of anything further, beyond palliative care. 

By profession, I am a generalist researcher who is used to sifting through and spotting patterns in large quantities of unstructured data, and family circumstances have turned my attention to this.  I believe there is some data for what you might call “palliative care with a bit of 'Edge'...” (and plenty of discussion about various drugs among doctors in the US) but I am having trouble finding anyone in the UK who admits to working in the field,with whom I can discuss specifics. 

  • Hi ,

    Thanks for your question, and welcome to the Online Community. I am so sorry to hear about your close relative.

    Because your question relates to seeking advice on potential treatments and medications, I have moved it over to our Ask a Nurse forum. Our qualified Cancer Information Nurse Specialists will now be able to see your post, and a member of their team will be along to advise you further as soon as they can.

    All the best,
    Matthew
    Macmillan Online Community Team

  • Dear ,

    Thank you for getting in touch and welcome to the Online Community. My name is Joanne, and I’m one of the Cancer Information Nurse Specialists on the Macmillan Support Line.

    We’re sorry to hear about your relative's diagnosis of endometrial cancer, and that their specialist team are only able to offer palliative care, despite surgery earlier this year. It can be difficult to accept that prognosis is shorter than initially expected and looking for different treatment options is a natural reaction, especially when we have a scientific background. As a UK cancer charity and a registered health profession we are unable to advise on the use of off licence drugs or make recommendations to access them.

    If your relative is unhappy that only palliative care is recommended, they can seek a second opinion which may recommend other treatment options. Sometimes this allows the person to accept their prognosis, occasionally the second opinion may suggest a different treatment option. You could also ask if there are any suitable clinical trials available.

    It’s important at this difficult time that both you and your relative look after your emotional wellbeing. You can check our webpage to find details of support and information organisations in your area. 

    If there is anything else we can help you with please feel free to get back in touch.

     

    Best wishes

    Joanne, 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 send us an email.

     

    Ref/ JF/LzM

  • Thank you, Matthew.  However, as you will see from the reply that Joanne has left me, with all due respect, the "ask a Nurse" forum basically just says to me "go back to your NHS doctor." 

    "The system" has done all it can for my relative.  To do more, I need to look further.

    I was not seeking to discuss treatment or medication on-line; I had sought to solicit from other forum users "anecdotal" stories and / or recommendations of qualified but nonetheless unconventionally-thinking individuals or bodies whom I should contact in order to have more detailed discussions offline. 

    People, not product or process. 

    And probably mavericks:  I am looking for professionals who read beyond the "abstract"  paragraph of a peer-reviewed report, and are not afraid to form their opinions from the data in the reports' appendices, even if their conclusions are not 100% congruent with the line presented in the abstract.

    So to speak, I am looking for Clozels not Bourlas.  They are not easy to find.

    The field of repurposed drugs has become rather emotionally charged, not least because of one drug which I shall refrain from naming which has polarised opinion. 

    If the Macmillan site cannot help me, I will have to turn to other, less mainstream fora.  That is unfortunate.  Nonetheless, thank you for your attempts to help.

  • Hi  

    My name is Dylan and I work with Matthew in the Online Community team. Thank you for your reply. 

    If you would like to hear from other members of the Community, you are more than welcome to post in one of our Community forums. I'll list two below that may be relevant to you. When posting in the forums, please make sure to keep in line with our Community Guidelines. This section of the guidelines covers medical conversations.  

    • Family and friends forum (If a member of your family or a friend, or someone else you know is living with cancer, this group is the place to share your feelings and get support)
    • Cancer chat forum (General cancer conversations)

    If you have any questions about the Online Community forums, please feel free to get in touch with our team on community@macmillan.org.uk.

    I hope you can find the information you are looking for and assist your relative during this challenging time. 

    Best wishes,
    Dylan

    Best wishes,
    Dylan

    Macmillan's Online Community Team