Personally I think that integrative approaches to treatment have an important role in treating the cancer paient but it is hard to know what is valid and what is ‘snake oil’. I’ve come across this company recently. Cancer Options is a private consultancy where (for a fee) you can obtain guidance on orthodox, complementary and integrative cancer treatments and therapies.

http://www.canceroptions.co.uk/

I’m not in a position to endorse the consultancy’s work or otherwise, but we try and make available resources that may be of help and let people make up their own minds. If anyone has experience of Cancer Options or have views on complementary approaches please share your views.

The Daily Mail in England carried an article about genetic profiling yesterday and mentioned CUP

http://www.dailymail.co.uk/health/article-2269931/Cancer-longer-death-sentence-DNA-based-treatment-transform-lives-10-years.html

This is the page on our website where we show the tests that we know about http://www.cupfoundjo.org/diagnosis_and_treatment/tests.html

Dr Richard Osborne of our Advisory Board, who led on the NICE CUP Guideline, has developed a new smartphone app which helps patients deal with treatment toxicity.
The idea is that if patients experience, say, excessive levels of nausea, vomiting, mucositis etc, the app prompts them to contact their cancer hotline and speeds up that process. The app also helps accelerate access for treatment if potentially serious infection is present.
It is called the Cancer Emergency Response Tool (CERT) – and it’s available for download for free, for Android phones.
It can be found by going to Google Play and searching for “cancer emergency response tool” or see this link https://play.google.com/store/apps/details?id=com.neutropenicsepsis.CERT&feature=search_result#?t=W251bGwsMSwyLDEsImNvbS5uZXV0cm9wZW5pY3NlcHNpcy5DRVJUIl0

I’ve asked what the access plans are for those with less advanced phones (me) or tablets (the computer sort) and will let you know the answer!

There is a new book out called: How to eat well when you have cancer, by Jane Freeman, published by Sheldon Press, London at £9.99.
I know the challenges of eating, particularly when undergoing chemo. I’ve skimmed the book and think it looks very good. If anyone reads it please post a review.

For those who haven’t seen this in our latest quarterly eNews – you can sign-up here if you want it http://www.cupfoundjo.org/support_our_work/index.html -
you may be interested to know that we have made a research grant.

The Trustees have been working with our Medical Advisory Board for some time to identify a suitable project. We have made a grant to Dr Harpreet Wasan (Consultant & Reader in Medical Oncology Department of Cancer Medicine, Hammersmith Hospital).

We are funding a molecular profiling pilot project that aims to develop more efficient treatment and management of CUP. Molecular analysis technologies are evolving extremely rapidly, and in the last few years it has become more feasible, both economically and scientifically, to look at the DNA sequence (whole genome) of previously banked or stored tissue biopsies. The project aims to uncover potential biomarkers (predictive and prognostic) of CUP by utilising clinical tissue samples, accrued at the Hammersmith Hospital, that show hallmarks of CUP metastasis, where no primary site of cancer is identified. Next generation sequencing will be performed on a subset of the samples as a pilot that will help us to understand the disease and detect potentially “drug-able” mutations. A successful pilot will enable further research.

We are not a wealthy charity and mindful of the generosity of our donors and fundraisers, and the heavy cost of research, the trustees are reluctant to make any significant research grants that will not be of the highest value in ‘making the unknown, known’. I hope that you will agree that this is an excellent use of our funds.

Some on Meeting Space very kindly contributed to the patient experience research we have been undertaking for the last 3 years with Southampton University. A summary of the findings is published here http://www.southampton.ac.uk/healthsciences/research/projects/Understanding_the_unknown.page

The CUP Foundation is working with researchers at the University of Southampton and clinicians in Southampton University Hospitals Trust on a new research project. The project seeks to explore the experiences (good and bad) of CUP patients, and their family members and friends during diagnosis and treatment.

Very little has been published about peoples’ experiences of living with CUP or best practice in caring for, or supporting, them. By adding to existing knowledge, this study has the potential to inform the development of future care for CUP patients.

If you would like to help with the study, please contact the study researcher, Dr Rebecca Foster, at the University of Southampton, whose contact details are as follows:

R.M.Foster@soton.ac.uk
Tel: 023 80597581

Helping with the research would involve taking part in a telephone interview, or face to face interview if you live close to Southampton. The interview will be up to one hour long and will be held at a time convenient to you. Those who wish to may also be invited to take part in a focus group discussion.

Hi

Does anyone have any knowledge or experience of Radiofrquebcy Ablation (RFA) as part of treatment for reducing secondary lesions?

Peter