Complementary therapies

Dear All

Yesterday we removed a post regarding non-standard therapies for clear cell ovarian cancer. The reason it was removed was that the poster quoted inaccurate statistics regarding clear cell; made unsubstantiated claims for the efficacy of the treatments; offered clinical opinion without disclosing on what evidence base; and was possibly promoting their own commercial business but was not clear on this. When some of you raised concerns the poster did not respond in a supportive manner. This is all contrary to the purpose of the forum, which is for a safe, supportive environment in which you can share your experiences and knowledge.

However, please know that we do not wish shut down discussion of complementary therapies. Please do continue to discuss your experiences and queries around this topic.

Those of you interested in complementary therapies may be aware of Penny Brohn UK, a charity which offers services, support and information regarding holistic approaches to cancer. They have a forum here on HealthUnlocked:

healthunlocked.com/pennybro...

They also have a helpline for queries: telephone 0303 3000 118 or email helpline@pennybrohn.org

Best wishes

Anna

Support Service Manager

9 Replies

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  • Thanks so much for this Anna

  • Penny Brohn UK is great - I did one of their courses 'Living with the impact of cancer' and can thoroughly recommend it.

  • Thanks Anna-the poster contacted me and said she could help me if I emailed her -I am clear cell - but I decided not to reply.

  • Hi Neona

    We wouldn't ever dictate any contacts made outside the forum, obviously it is up to individual members. But if anyone gives you information you're not sure of, do get in touch with us. We are happy to talk through anything and provide links to reliable sources of information if needed.

    Best wishes

    Anna

  • Thank you.

  • Thank you for removing posts that could mislead us, I was clear cell and given how few of us are diagnosed with it articles that offer false hope are cruel and dangerous. It's good to know you look after us ❤xx Jane

  • Thank you for this Anna. It is so reassuring to know that the forum is closely monitored.

    Has there been any more info on the Park inhibitors that NICE are looking into? Thanks. Ann x

  • Hi Ann

    We haven't heard any more at present about Niraparib, the PARP inhibitor NICE are considering. I will post in the forum to keep you updated when it progresses through their system. At the moment their expected publication date for guidance in March 2018.

    However, you may have heard last week that the FDA, who approve drugs for the US market, have approved Niraparib. You can read about their decision here:

    fda.gov/Drugs/InformationOn...

    Obviously the decision NICE have to take for a National Health Service is very different to what the FDA decide for the US system, but hopefully its a positive sign.

    Best wishes

    Anna

  • Thank you for the update. Yes, I read about the FDA decision. We have to continue to live in hope. Ann

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