We have opened a thread that provides access to many of the key reliable UK and international resources to aid CLL/SLL patients. This we can expand to provide a current list of good international CLL information and resources. Please discuss and add to comments your own national resources that you are finding helpful and current.
CLL/SLL INFORMATION & RESOURCES
Cancer.Net’s Guide to Chronic Lymphocytic Leukemia:
cancer.net/cancer-types/leu...
The link to this regularly maintained document was submitted by Kwenda/Dick and is one of the best sites for a CLL overview according to Chris/Cllcanada. HAIRBEAR/Nick notes it has really interesting signposting and linking to well laid out information and PaulaS found it very readable, user-friendly, easy to understand.
International Guidelines source document
Paper by Hallek et al that seems to be the foundation for the various country specific variants of how to diagnose, monitor and treat CLL patients:
bloodjournal.hematologylibr...
UK BASED ON-LINE CLL COMMUNITIES
CLL Support Association at HealthUnlocked - healthunlocked.com/cllsupport our active facility enables you to connect with others, share knowledge and experiences to help live with the disease. Ask a question, write or read a blog, share news and views or participate in a poll, help develop the community.
Macmillan on-line community - community.macmillan.org.uk CLL, SLL, HCL is an active group of CLL/SLL & HCL patients & Carers & a very social space where support and information is shared on many general topics in discussion threads. The website - macmillan.org.uk - provides information on just about everything that may help when with living with a cancer.
Maggie’s on-line community, community.maggiescentres.org has a CLL community forming part of the online haematology chat group, it meets at 10.45 AM on the first Tuesday of every month to chat in real time. The website - maggiescentres.org links you with the Maggie’s approach to cancer support, providing access to others and therapeutic courses through the fast expanding list of Maggie’s centres - maggiescentres.org/centres/...
The UK Chronic Lymphocytic Leukaemia Forum, ukcllforum.org.uk
Although appearing not very active, provides much support and knowledge from a group who will respond and join in when you post. Also aims to help bridging the gap between patients, scientists and clinicians.
USEFUL UK SOURCES OF CLL INFORMATION
Below are a few UK links to current and reliable information written in patient friendly and understandable language.
ESPECIALLY HELPFUL TO NEW COMERS
If you register with the CLLSA you will be forwarded an information pack that includes several of the following patient information booklets.
UK people can register for a patient information pack at: cllsupport.org.uk/php_files...
The CLL support Association (CLLSA) website : cllsupport.org.uk
There is a lot of information listed below. Information recommended for newcomers is a good place to start. Skip what you don't wish to read. CLL/SLL will give you time to go back and read more as you begin to understand the new language and information that may be helpful for you, CLL diagnosis is a very difficult time but is not a sentence, we hope that the information provided by the community will be helpful. Take your time and be selective.
CLL IRELAND
clli.ie
Netherlands
United Kingdom
Leukaemia & Lymphoma Research: website - leukaemialymphomaresearch.o... - Is a good place to start your learning, very recently updated information is available in booklets, Audio and videos and an extensive website written in an understandable manner.) LLR 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 information and available support. leukaemialymphomaresearch.o...
CLL Support Information on trials in the UK - cllsupport.org.uk/search/no...
UK CLL clinical trials information ukctg.nihr.ac.uk/clinical-t...
Medical Research Trials - National Institute for Health Research
NCRI CLL trials portfolio map - csg.ncri.org.uk/portfolio/p...
UKCTG – UK Clinical Trials Gateway – ukctg.nihr.ac.uk/trials?que...
ESPECIALLY HELPFUL TO NEWCOMERS - INFORMATION BOOKLETS & PDF DOWNLOADS
Chronic Lymphocytic Leukaemia (CLL) - leukaemialymphomaresearch.o...
Watch and Wait: Monitoring While Treatment Is Not Necessary - leukaemialymphomaresearch.o...
Supportive Care - leukaemialymphomaresearch.o...
Macmillan 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 information and available support - be.macmillan.org.uk/be/defa...
Understanding Chronic Lymphocytic Leukaemia - goo.gl/KZYoPd
This is brief easy read and current introduction to and overview of CLL written by Professor Pettitt for the UK Lymphoma Association also a good place to start - goo.gl/fQ0uI
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OTHER SOURCES OF INFORMATION AND SUPPORT
Cancer Research UK - cancerresearchuk.org/cancer...
Lymphoma Association - lymphomas.org.uk - Information and support - lymphomas.org.uk
Leukaemia and lymphoma what’s the difference? - lymphomas.org.uk/sites/defa... - “A note on Chronic Lymphocytic Leukaemia - There is a type of non-Hodgkin lymphoma called Small Lymphocytic Lymphoma (SLL) which is considered to be the same disease as Chronic Lymphocytic Leukaemia (CLL) but without the abnormal cells in the blood. Because CLL and SLL are now considered to be one and the same condition (their treatment is the same too), CLL is classified as a non-Hodgkin lymphoma.”
Leukaemia care - leukaemiacare.org.uk
Lymphoma Research Charity Bloodwise
Lymphoma Action
lymphoma-action.org.uk +44 1296 619400
Healthtalkonline, uses video snippets from CLL patients and medics to support information you can listen to others and their reactions to the diagnosis healthtalkonline.org/Cancer...
Other people’s reactions to your diagnosis healthtalkonline.org/Cancer...
- Watch and wait healthtalkonline.org/Cancer...
- Living with the symptoms of CLL healthtalkonline.org/Cancer...
UK TELEPHONE HELPLINES: :
Mon to Fri – Macmillan 0808 808 0000 & The Lymphoma Association 0808 808 5555
24 Hour Leukaemia Care Line 08088 010 444,
CLL Support Association answer service 0800 977 4396
Other CLL Related Websites
CLL Advocates Network Community
Mutated/Unmutated Blogspot
mutated-unmuated.blogspot.c... is the late Professor Hamblin’s blog. Here he has written extensively about CLL, often translating and reviewing developments for us amongst his own random thoughts about literature, poetry, politics, religion, cricket and music.
Additional Sources of information - cllsupport.org.uk/search/no...
CLL Physicians recommended by CLL Society Readers:
cllsociety.org/toolbox/cll-...
Please send additions or corrections to the CLL Society at cllsociety.org/contact-us/
Ranking of published CLL specialists
Top X% of N published authors worldwide on B-Cell Chronic Lymphocytic Leukemia from last 10 years, based on contributions to NN articles on the topic.
healthunlocked.com/cllsuppo...
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USA & CANADA - SEVERAL INTERNATIONAL KEY CLL RESOURCES FOR PATIENTS AND CARERS PROVIDED BY PKENN.
CLL Doctors Identified by ACOR CLL List members - sites.google.com/site/acorc...
The same CLL Doctor list may found on the ACOR CLL List Help Pages at sites.google.com/site/cllli...
Dr. Sharman's CLL & Lymphoma Blog. Translating basic science and clinical breakthroughs into language we all can understand - Great information and a doctor's list cll-nhl.com/p/cllnhl-doctor... to supplement the ACOR List of CLL Doctors
Dr. Sharman's blog on the value of support groups cll-nhl.com/2014/01/talking...
Leukemia & Lymphoma society - lls.org - CLL booklet for patients and CLL booklet for patients and caregivers (same basic information, but a bit more general) as well as other booklets which can be ordered in the US), 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.org – CLL booklet available in print for free (North America) or on line lymphoma.org/atf/cf/%7Baaf3... . LRF also offers some financial assistance
The Leukemia & Lymphoma Society lls.org and the Lymphoma Research Foundation lymphoma.org offer other resources such as phone conferences and local meetings and regional and national forums.
CLL Topics/CLL Updates - clltopics.net and cll-updates.net - Chaya Venkat has decoded and translated CLL information for our understanding and has one of the most extensive Patient information resources on the internet. While Chaya retired from providing updates in 2013, her articles on CLL diagnosis, prognostic markers and living well with CLL were still reasonably relevant in 2019:
healthunlocked.com/cllsuppo...
clinicaltrials.gov is a database of privately and publicly funded clinical studies conducted around the world.
INFORMATION FOR NEWCOMERS IS ESPECIALLY GOOD - clltopics.net/Primer.htm . Chaya, who has kept this group going has retired, but her daughter is keeping the site available. Most recent articles; updates.clltopics.net
CLL Canada - cllcanada.ca - 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. GOOD INFORMATION FOR NEWCOMERS - cllcanada.ca/2010/index.htm
Patient Power - Facebook or patientpower.info/health-to... - 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: patientpower.info/bio/susan...
Now available from Patient Power EU is patientpower.eu/?.and Oncologytube oncologytube.com/patientpower
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 on his blog: "Brian Koffman's Awesome Transplant and CLL Adventure: Learning From and About Cancer" : bkoffman.blogspot.co.uk
and more recently the amazing CLL Society: CLLSociety.org
CLL Global Research Foundation - - cllglobal.org
CLL intro - cllglobal.org/CLLintro/inde...
News & Views - cllglobal.org/CLLnews/index...
cancercare.org - 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.
cllforum.com/ - a discussion group that includes medical information and social support from fellow patients.
listserv.acor.org/scripts/w... (no e in listserv) - online medical discussion group made up of fellow patients
Bad to the Bone - Facebook – CLL group which was run by Chris Dwyer of CLL Canada facebook.com/groups/CLLSupport
Submitted by Chris/Cllcanada
and subsequently added to by AussieNeil
Clinical Trials available in Canada:
canadiancancertrials.ca/def...
CLL Canada (previously CLLPAG (Patient Advocacy Group)
Canadian Perspectives on CLL Management and treatment
1) Management (2010)
newevidence.com/oncology/a-...
2) First Line Treatment (from 2015)
ncbi.nlm.nih.gov/pubmed/259...
3) Treatment of unfit patients (2013)
newevidence.com/oncology/a-...
4) My CLL Compass
'You can play an active role in making treatment decisions. This quiz will help you identify your unique needs and speak to your doctor about what treatment is best for you':
Content on websites does not replace the relationship between you and your doctors or other healthcare professionals. Views expressed are those of individuals and not of CLL Support Association
TO BE CONTINUED - please contribute information and discussion in comments below. The article will be edited to reflect current available information as the information thread develops...
(Last updated 01-Nov-2020)
Canadian Study...treatment increases risk of secondary cancers in CLL
