Talking About Mistletoe therapy (TAM) research study

[OvacomeSupport]

Dear all,

We have been contacted by a third-year undergraduate medical student at University of Bristol, who is conducting a research project called Talking About Mistletoe therapy (TAM). Please read her message below:

This project is called Talking About Mistletoe therapy (TAM) study, and we plan to conduct a qualitative analysis (which aims to read, understand, and sum up) the conversations around mistletoe therapy from selected online UK cancer forums. This study is part of a programme of mistletoe therapy for people with cancer being conducted at the University of Bristol by Dr Huntley.

We are using forums that are recommended by the Penny Brohn centre in Bristol and Ovacome is one of the charities listed on this. In practical terms we are going to search the forums using key words to see if your participants are talking about mistletoe. This is a unique source of information for us for as your experts know mistletoe therapy is not generally available through the NHS and is obtained through private practice which is a complete contrast to several central European countries where it is integrated into mainstream oncological care.

This reason I am writing to you on behalf of myself and Dr Huntley to inform you of this and offer you a summary of what we find at the end of the six weeks. We would also like to reassure you that we are following the research guidelines on how to look at the forum sensitively. Although we will collect conversations from your participants, we will only record them verbatim in our files and any public facing work will not include information that will identify any individuals. Equally we are not planning to analyse the information per charity forum.

The researchers will not be joining our My Ovacome forum as members and so will only be able to access posts from our community which are publicly available. Our members can edit their settings to allow their posts to be either publicly available to anyone using HealthUnlocked, or to only be available to members of My Ovacome.

If you have any questions about this study, or around your HealthUnlocked settings, please do get in touch with our support team. You can give us a call on 0800 008 7054, send us an email ([e-mail]) or reply directly to this post.

Best wishes,

Alice - Ovacome Support

[RoseMS]

Hello. Just to say, I have been using sun cutaneous mistletoe for over 2 years now and have a strong belief in its benefits to me after treatment for ovarian cancer. Happy to answer any questions. X

[Carpediem68 in reply to RoseMS]

do you mind if I ask what is sub cutaneous mistletoe and what are its benefits? I have never heard if this. Thank you

[RoseMS in reply to Carpediem68]

well being and they boost the immune system which fights to keep us well. It is costly but for me, feel it’s worth the cost. It is used in countries like Germany as standard of care so not a wacky fad idea as far as I can see!

[Carpediem68 in reply to RoseMS]

Thank you

[Trickysite]

Ovacome, please do you have any information on mistletoe therapy that you can put on here? Thank you,

Emma

[Kaitlinsmum]

Well now I am interested in mistletoe therapy and wonder what it is all about. Any out there accessing this?

[carrotmunch5 in reply to Kaitlinsmum]

bristol.ac.uk/primaryhealth...

Just found this.

[carrotmunch5]

Is the therapy held at Bristol university?

[OvacomeSupport Partner My Ovacome Team]

Good morning everyone

Thank you for all your replies.

Mistletoe is a plant that grows on different types of trees. The extract of mistletoe has been used as an herbal medicine for a range of medical conditions.

Memorial Sloan Kettering Cancer Centre have some information about European Mistletoe on their comprehensive ‘About Herbs’ database, which I hope may be helpful and can be found through this link: mskcc.org/cancer-care/integ... . This page outlines what European Mistletoe is, potential uses, benefits and side effects – as well as highlighting some potential contraindications and side effects. Memorial Sloan Kettering Cancer Centre explain that ‘Mistletoe therapy may improve symptoms and quality of life for cancer patients, but definitive information is still lacking’.

Dr Sosie Kasaab at the Integrated Cancer Care Centre at University College London Hospitals NHS Foundation Trust specialises in homeopathy, acupuncture and Iscador (a mistletoe preparation). These treatments are used to help with symptom relief, including side effects of conventional cancer treatments and quality of life. Dr Kasaab is particularly concerned to ensure that complementary treatments are used safely and appropriately alongside conventional treatments. If you would like to learn more, please visit: uclh.nhs.uk/our-services/fi... .

You may also find our information booklet about complementary therapies of interest, which can be found here on our website: ovacome.org.uk/complementar... . This has a section dedicated to plants and herbs and provides details about the National Institute of Medical Herbalists that lists herbalists in your area: nimh.org.uk/ .

It’s really important to tell your clinical team about any dietary supplements you’re considering including herbal products, vitamins, minerals in order to help them prevent any contraindications and keep you safe.

I hope this information is useful Please don’t hesitate to get in touch with us if you would like to talk through anything or have any other questions. You can reply directly through this forum, email us via [e-mail] or give our friendly support line a call on 0800 008 7054. We’re here Monday – Friday, 10am – 5pm, to help with queries relating to ovarian cancer or have a chat about anything that’s on your mind.

Best wishes

Annie – Ovacome Support