For Newcomers and recently diagnosed

 CLLSA Information Recommended for Newcomers

If you register with the CLLSA you will be forwarded an information pack that includes several of the following patient information booklets.

People can register on the site and we will send you, via email, an electronic  patient information pack. Register Here:   We can only post the information pack to those without an email who are living in the UK.

1) A good overview of CLL can be found on the Here.

2 ) A guide to help understand your blood results can be found Here. 

3)  This Start Here section gives access to a lot of useful information. This will allow you to begin to understand the new language and start to understand what your diagnosis means.  

4) It is important that you keep uptodate with Vaccinations.

5) Watch and Wait

 

Further resources recomended for newcomers and recentley diagnosed

 

www.nhs.uk 

Is the on-line information centre for the NHS. A very useful website with links to information about all healthcare matters , from information about conditions and treatments, and therapies  to support services and information to aid you to navigate the system .

The website provides a good CLL section to start. Has good links with the CLLSA and on-line community.

Chronic lymphocytic leukaemia overview

Chronic lymphocytic leukaemia - Causes

Chronic lymphocytic leukaemia - Diagnosis 

Chronic lymphocytic leukaemia - Treatment 

Chronic lymphocytic leukaemia - Complications 

Treatments pages in all UK CLL information literature will require updating due to   new treatments for some groups having been recently approved for NHS use 2014/15   (edit note  2015)

Leukaemia Care

Leukaemia CARE is a UK national blood cancer support charity. They are dedicated to ensuring that anyone affected by blood cancer receives the right information, advice and support.  Their site can be found here. Leukaemia Care have a UK wide network of local support groups for people affected by blood cancers.

 

NEW 2015 booklets availble as PDF downloads Step by Step on Lymphocytic Leukaemia (2015)  and  Step by Step on Watch & Wait

 

Bloodwise formerly Leukaemia & Lymphoma Research (LLR):

The website is a good place to start your learning, where very recently updated information is available in booklets, Audio and videos and an extensive website written in an understandable manner.

Bloodwise provide an extensive range of booklets available free in print or via on-line PDF,  these cover a wide range of topics as well as disease informarion and available support. see Blood Cancer Information Booklets 

 Of particular interest: Patient & carer information CLL booklet (2014 UK) a good introduction overview  to CLL written in understandable language to help UK patients and carers understand CLL, treatment and care and accessing support resources.

Also Watch and Wait Monitoring While Treatment Is Not Necessary  

 

Cancer Research UK

The information website from Cancer Research UK. This website is  very clear and easy to understand without being too technical. An extensive CLL specific section providing a wide range of CLL information and resources  and draws on the knowledge of the research organisation to support with data and trials information.   CLL here.

 

Healthtalkonline

Uses video snippets from CLL patients and medics to support information you can listen to others and

   - Their reactions to the diagnosis        

  - Other people’s reactions to your diagnosis     

  - Watch and wait 

  - Living with the symptoms of CLL

 

Visit the CLLSA On-line comunity welcome to newcomers for support and information helpful to newcomers and recently daignosed 

 

Additional CLL sources of information and control