International Sources of Information

INTERNATIONAL KEY CLL RESOURCES

 

FOR PATIENTS AND CARERS

 

Australia Resources

 

Australian Leukaemia Foundation 

   Glossary  not specific to CLL, but comprehensive

  CLL/SLL News November 2014:

 

New Zealand

Leukaemia and Blood Cancer New Zealand 

A CLL booklet is available plus other useful publications: 

 

Australia / New Zealand

The Australasian Leukaemia & Lymphoma Group (ALLG) is the only not-for-profit, collaborative clinical research group in Australia and New Zealand dedicated to finding new ways to treat blood cancers such as leukaemia, lymphoma, myeloma and myelodysplastic syndromes.

The ALLG membership includes more than 600 doctors, nurses, scientists and support staff across Australia and New Zealand, all of whom are looking for ways to better treat blood cancers through clinical research. 

Current Leukaemia, Lymphoma and Myeloma clinical trials 

 

Canada Resources

CLL Canada

Chris Dwyer has put together an immense amount on CLL research and news worldwide. Much of the site is very scientific, but invaluable when you wish to find papers and references. Glossary and other entries are not directly link able but there are a number of good glossaries available from the home page.

  • Good information for Newly Diagnosed
  • Glossary 

Bad to the Bone - Facebook – CLL group run by Chris Dwyer of CLL Canada 

 

New Evidence

A Canadian Perspective on the Management of Chronic Lymphocytic Leukaemia 2010

A Canadian Perspective on the Treatment of Unfit Patients with Chronic Lymphocytic Leukaemia 2013

Canadianizing a New Standard of Care in CLL 2011

Cancer Drug funding in Canada, but not Quebec 

 

USA Resources

 

ACOR 

CLL Doctors Identified by ACOR CLL List members  and at Google Clllisthelp

Online medical discussion group made up of fellow patients

 

American Society of Haematology ASH 

Overview paper by Hallek et al that seems to be the foundation for the various country specific variants: 

 

Dr. Brian Koffman Blog  

"Brian Koffman's Transplant and CLL Adventure: Learning From and About Cancer" : 

Dr Brian Koffman regularly posts us news of his video interviews with leading CLL experts and always accompanies these with his interpretations of what these mean for patients, accompanied with thoughts and news in general: 

CLL Society Website

The CLL Society Inc. Is the New website led by Dr Brian Koffman it is a patient–centric, physician–curated, non-profit organization focused on education and support for patients with chronic lymphocytic leukemia (CLL). Dedicated to addressing the unmet needs of the CLL and related blood cancer communities,  

 

Dr. Sharman's CLL & Lymphoma blog.

Translating basic science and clinical breakthroughs into language we all can understand - Great information

Dr. Sharman's blog on the value of support groups

 

CANCER CARE  

Offers a variety of resources and advice about resources - everything from financial aid to one on one phone support. The phone volunteers are very helpful.

 

CLL Global Research Foundation 

Introduction to CLL

News & Views

 

CLL Non-Hodkin Lymphoma (NHL) 

CLL NHL list of doctor in USA  

 

CLL Topics   

Chaya Venkat has decoded and translated CLL information for our understanding and has one of the most extensive patient information resources on the internet. Chaya, who has kept this site going retired in 2013, but her daughter is keeping the available while the information is relevant. 

Most recent articles; 

Information for newcomers is especially good.

 

Leukaemia & Lymphoma Society 

The Leukaemia & Lymphoma Society  offer other resources such as phone conferences and local meetings and regional and national forums. Heavy on how things are done in the U.S., it may or may not apply in other countries

CLL booklet for patients and CLL booklet for patients and caregivers, read on line, or downloaded, phone (in the US) and on line advisors including advisors about clinical trials, and financial assistance. Important materials are available in English, Spanish, and French. LLS can also connect you one to one with an "experienced" CLL patient.

 

Lymphoma Research Foundation

The Lymphoma Research Foundation offer resources such as phone conferences and local meetings and regional and national forums and some financial assistance. 

CLL booklet available in print for free US or on line 

A Guide for Patients, Survivors and Loved Ones

Understanding CLL/SLL 2010

 

Patient Power 

Facebook or  Health Topics - CLL  video interviews with top CLL specialists and others with helpful input related to CLL from Andrew Schorr, and educational input from several sources such as

Prof Susan Leclair about understanding your lab tests

Videos are also available  Patient Power EU and Oncologytube 

The Patient Power Blog 

 

The CLL FORUM

A discussion group that includes medical information and social support from fellow patients.

 

More extensive reading and technical overview  papers

 

MOFFITT Cancer Care 

2012 Front-Line Therapy for Chronic Lymphocytic Leukaemia

For more than half a century, alkylator-based therapy such as chlorambucil or cyclophosphamide has been used to treat patients with CLL. More effective therapies, including the use of monoclonal antibodies in combination with chemotherapy, have been available since the late 1990s, and these have been shown to prolong both progression-free survival (PFS) and overall survival.

(OS). More aggressive management may therefore be warranted for patients with early-stage disease. However, since more than two-thirds of CLL patients are older than 65 years, treatment needs to be tailored to each patient’s fitness level, and the presence of comorbidities needs to be taken into account when treatment decisions are being contemplated. This review examines the diagnosis of CLL, the role of prognostic factors in determining treatment goals, and current data on front-line management of CLL.

2012 Chronic Lymphocytic Leukaemia:  New Choices for an Old Condition

Over the last decade, major advances in chronic lymphocytic leukaemia (CLL) have helped us to understand the underlying pathogenesis leading to the discovery of new prognostic factors. Chemo immunotherapy has emerged as the current standard of care in the treatment of young and fit patients with CLL. Despite very high response rates, chemo immunotherapy is too toxic for the majority of elderly patients with CLL. The optimal management approach for patients who are older or for those who do not respond to these agents remains unclear. Patients who have relapsed after treatment or those who have high risk factors also present treatment challenges. In this issue of Cancer Control, we review the more important clinical and therapeutic aspects of CLL.

 

Cancer.net   

An excellent source of information.

 

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Other resources

MedlinePlus  (US site) Comprehensive medical dictionary.