Where to go from here

Posted in: My story
Posted on: February 22nd, 2012 by Trina B View all 2 Comments

Hi all

I am new at this as my mother was diagnosed with CUP cancer in September 2011 at the age of 64

It took approximately 3 months of mis-diagnosis with treatment commencing on a rare cancer named GIST cancer before the diagnosis for CUP cancer was provided

Chemo commenced Vinorelbine and carboplatin (as the thought was maybe the primary was from her lung) and she has just finalised her 4th cycle

Ma has had her scans taken which was approximately 2 months from the last ones…with devastating results with the cancer showing growth in the lung, liver, abdomin wall and thigh muscle and a new small growth in the brain.

We go back to see the specialist today and i have been researching alot of information however have not been able to access the sister site for Jane in Australia….? has anyone else had any problems.

I have found all your comments helpful with the LAB21 and CUP One trials etc to assist with the oncologist discussions today however I will respect and follow what ever my Ma wishes from this point.

If there is any alternative medicines or any further medical information you may find helpful at this point that we may not be aware of I would be greatly appreciative.

thanks again for this site… as you all know it is a very difficult and confusing time for all….

Cheers Trina B

 

 

Research study: patient and carer experiences of CUP

Posted in: Treatment
Posted on: December 1st, 2011 by John (Moderator) View all 12 Comments

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.

Australian advocacy site for CUP

Posted in: International alliance
Posted on: October 14th, 2011 by John (Moderator) View comment

Good news that Jane has launched her website https://sites.google.com/site/cupaction/
and we wish her every success.

Photos

Posted in: Change
Posted on: February 16th, 2012 by John (Moderator) View all 2 Comments

Please can I try and encourage the uploading of more photos to make our exchanges more characterful!? I quite understand if you don’t want to upload a photo of yourself but you can put a photo of anything! It might be a pet, a flower, or an image of somewhere special. You don’t need to explain the logic but it might be a photo that means something to you in the cancer battle – e.g. the car you want to get back to driving, the Duracell battery that goes on forever, the picnic that you are going to share etc.