Patient Profile's and Journals
Patient Journals
"RITRAT" by Spouse Mouse
This is the journal of one of our members who has just started treatment in the UK's first trial of LFCR verses FCR. The official description of the trail reads: "A randomized, open label, multi-centre, phase 2 study to evaluate the safety and efficacy of Lumiliximab in combination with Fludarabine, Cyclophosphamide, and Rituximab (LFCR) versus Fludarabine, Cyclophosphamide and Rituximab (FCR) alone in subjects with relapsed Chronic Lymphocyte Leukaemia."
The journal will record the story of "RITRAT", his alias name, as he travels through this demanding treatment over the next 6 months. The journal will be updated on a frequent basis by his wife "Spouse Mouse, so please check back. Click here for the full journal of RITRAT.
Patient Profile's
We would like to encourage patients to make use of the Patient Profiles section of the website. We know of no other patient community website that provides this facility with the aim of maximising the dissemination of information based on the patient profile provided.
In addition, we feel that it's very useful for other members of our community to have access to a short form summary of other patients experiences. This can be useful in a number of ways:
- When asking a question it saves time in having to provide supporting data as the information has already been submitted.
- When responding to a question, the person responding has a good overview of the patient's journey to date.
- Patients have the opportunity to look through the profiles to identify someone who is similar to themselves or to look for a patient with a similar experience.
We appreciate that some members will be reluctant to have their name or personal details disclosed on this website. In this case we offer the facility to login under an alias name that only they will know. We do feel that this should satisfy the confidentiality requirements of most members.
To have your patient profile added to the website, would please email your story/information/details to: robert@ukcllforum.org.uk. I am sorry that the facility does yet exist for you to do this on-line.
To view the patient profiles of our community please click the links below:
