CLL INFORMATION - A developing reliable and cu... - CLL Support

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CLL INFORMATION - A developing reliable and current international list of CLL Information & Resources.

HAIRBEAR_UK profile image
HAIRBEAR_UKFounder Admin
6 Replies

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

hematon.nl

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

bepartofresearch.nihr.ac.uk

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

- - - - - - - - - - - - - - - - - - - - - - - - -

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

bloodwise.org.uk/lymphoma

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

clladvocates.net

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...

===================================================================

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)

cllcanada.org

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

mycllcompass.ca

'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':

mycllcompass.ca/pre-quiz/

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)

Written by
HAIRBEAR_UK profile image
HAIRBEAR_UK
Founder Admin
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AussieNeil profile image
AussieNeilPartnerAdministrator

Australia/New Zealand

Lymphoma Australia

lymphoma.org.au

Australian Leukaemia Foundation

leukaemia.org.au

CLL page:

leukaemia.org.au/web/aboutd...

A CLL booklet (online or hard copy version) is available plus other useful publications:

leukaemia.org.au/web/aboutd...

Fact sheets:

leukaemia.org.au/web/aboutd...

Carer Newsletters (general blood cancer news):

leukaemia.org.au/web/news/c...

There's a monthly CLL Teleconference facilitated by Chris aka Daisyruby1 (send member Daisyruby1 on this site a personal message if you wish to join in).

For those located in the capital cities or large regional centres the Leukaemia Foundation provides great educational services, transport to appointments and other support services. For those living in more remote areas, accommodation is provided for members and their family while undergoing treatment.

Leukaemia and Blood Cancer New Zealand

leukaemia.org.nz

A CLL booklet (online or hard copy version) is available plus other useful publications:

leukaemia.org.nz/page/213

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.

allg.org.au/

Lymphoma Australia provides education, support and awareness across Australia.

lymphoma.org.au/

Purpose: lymphoma.org.au/page/55/our...

Current Leukaemia, Lymphoma and Myeloma clinical trials

allg.org.au/current-trials....

List of all cancer trials in Australia

Clinical Trial information in Australia can be found at the following websites:

- Australia Leukaemia and Lymphoma Group

allg.org.au/

Lymphoma Australia

lymphoma.org.au/page/34/cli...

- Cancer Trial Australia

cancertrialsaustralia.com/C...

- Australian/New Zealand Clinical Trials Registry

anzctr.org.au/

- NHMRC Clinical Trials Centre

ctc.usyd.edu.au/

- Queensland Clinical Trials Network Inc.

qctn.com.au/Default.aspx

- Australian Cancer Trials

australiancancertrials.gov.au

Neil

(Last updated 0-1-Nov-2020)

HAIRBEAR_UK profile image
HAIRBEAR_UKFounder Admin in reply toAussieNeil

Thank you for providing some good Southern hemisphere resources Neil. As you mentioned in conversation it would be useful to have some South African and South American resources too.

HAIRBEAR_UK profile image
HAIRBEAR_UKFounder Admin

Can you understand that Symbol, name, acronym, synonym, code, medical term????

The dictionary page on Patient.co.UK gives you instant access to a search facility that accesses some of the directories and glossaries listed below:

patient.co.uk/directory/dic...

UK SITES:

Online Medical Dictionary mondofacto.com/dictionary/

Now exclusively licensed by mondofacto, the Online Medical Dictionary is a searchable dictionary of medical and scientific terms.

Medical Abbreviations - from MediLexicon medilexicon.com/

Use to search for the meaning of medical terms and abbreviations such as tds, bd, prn, etc. Also has a medical dictionary.

Medical Abbreviations rcgp.org.uk/default.aspx?pa...

A list of abbreviations commonly used in medical notes written by doctors. Aims to make reading your own notes more comprehensible. A service from the Patient Partnership Group of the Royal College of General Practitioners.

Glossary of Health, Social Care and Information Technology cpa.org.uk/sap/glossary/glo...

Explains terms used by health and social care agencies.

Glossary of Health & Social Services Acronyms sochealth.co.uk/health-and-...

Useful site for understanding all those confusing abbreviations.

NON UK SITES (general):

CLL/Leukaemia Specific Glossaries (added by AussieNeil)

a) Glossary entry on Chris's CLLCananda website. (Not directly linkable but there are a number of good glossaries available from the home page.)

cllcanada.ca/2010/index.htm#

b) Australia's Leukaemia Foundation Glossary (not specific to CLL, but comprehensive)

leukaemia.org.au/glossary

MedlinePlus nlm.nih.gov/medlineplus/mpl...

(US site) Comprehensive medical dictionary.

Stedman's lww.com/webapp/wcs/stores/s...

(US site) Comprehensive medical dictionary.

OneLook onelook.com/

(US site) - A general (not just medical) but comprehensive online dictionary. Over1.6 million words included from over 250 on-line dictionaries. It would be hard to find a word in the English Language that cannot be found, defined or explained from this site.

MedicineNets Medical Dictionary medterms.com/script/main/hp...

MedTerms medical dictionary is the medical reference for MedicineNet.com. (US site)

CLL and SLL - IO Group (was Yahoo Group)

groups.io/g/CLLSLL

andrewschorr profile image
andrewschorr

Did you leave put patientpower.info/cll or our developing patientpower.eu? also, oncologytube.com/patientpower Do we pass muster? There are 20 more very recent interviews with CLL experts about to be published including with Professor Hillmen from Leeds, one of my favorites. Alsop, don't forget Dr. Brian Koffman's blog as a CLL patient. He's been given a second chance at life by being in the Ibrutinib trial.

HAIRBEAR_UK profile image
HAIRBEAR_UKFounder Admin in reply toandrewschorr

Hi Andrew

Thank you for this

Pass muster ? Without doubt, well done. The new European approach is very interesting. look forward to hearing more about this next week..

Patient Power EU is patientpower.eu/?.and Oncologytube oncologytube.com/patientpower will be added to expand the existing information above:

Patient Power - Facebook or patientpower.info/health-to... .. - video interviews with top CLL specialists and others with helpful input related to CLL done by Andrew Schorr and now, Brian Koffman. Also see those by Susan Leclair about understanding your lab tests: patientpower.info/bio/susan.....

Do you have a paragraph that explain the Patient Power range that could be used to accompany them in the draft list compiled from this thread.

I am enjoying watching your video broadcasts and looking forward to more news from IWCLL.

Many thanks

Nick

PS Of course we will add Brian Koffman's blog to the list. Brian kindly supports our community here and does drop in from time to time and post to members and provide developments and important news information as he updates his blog

Brian Koffman's Awesome Transplant And CLL Adventure: bkoffman.blogspot.co.uk/

Do you have a list of other recommended patient blogs?

bkoffman profile image
bkoffmanCLL CURE Hero

You might want to add my blog, bkoffman.blogspot.com, though it is more wide ranging that just reporting on CLL, most of my posts and all my video interviews should be of interest to the CLL community, especially for the latest news.

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