A guide to the world’s best leukemia websites
for information and support

This is a summary of the best websites I could find around the world for leukemias, both for general information (symptoms, treatment options, research, etc) and for forums (message or discussion boards) and other kinds of support. And for those living in Australia there is information about Australian websites here. 

Most links open in a new window or tab, so to return to this page simply minimise or close the new window or tab.

You can go here for terminology relating to the different kinds of leukemias. And if you are looking for information about leukemias on the search engines, there are three alternative spellings - leukemia, leucemia and leukaemia.

If you want to find an all-encompassing website devoted to leukemia and the other so-called blood cancers, then the website of The Leucemia and Lymphoma Society “committed to fighting all blood cancers” is the number one place to go. There are many services offered on this website including a call centre, and information on types of blood cancers, symptoms, treatments, support, research, volunteer activities and a lot else. It has about twenty-five forums or discussion boards on the blood cancers, with individual posts now totalling over twenty thousand. The link to their home page is www.lls.org and the direct link to their forum index page is Discussion Boards

Another excellent and recommended leukemia website is "ACOR's Leukemia Links" at http://leukemia.acor.org.

Here's a description from the website of its unusual origin: “Barbara Lackritz, mother of three adult children, had worked as a speech pathologist for 30 years when she was diagnosed with B-cell chronic lymphocytic leukemia (CLL) in 1989. She was an information gatherer from the day of diagnosis and dove into research both in print and online. ...
Barbara, known as GrannyBarb on the Internet, started a web page for others with CLL and was a regular participant on CANCER-L, one of the first listservs hosted by ACOR (Association of Cancer Online Resources).
As her website grew, she found another leukemia site built by Art Flatau, an AML survivor. Barbara and Art decided to combine their sites. They then build and run the world-famous leukemia site known as "GrannyBarb and Art's Leukemia Links." This huge, accurate, and user-friendly site was designed to describe the various adult leukemias and contained information on treatment options, genetic information, links to the best sites on the Web, a site map, and Barb's and Art's personal stories.”

The site has since been renamed "ACOR's Leukemia Links" - it’s a must to visit if you have an involvement with leukemia. It's address again is http://leukemia.acor.org .

A valuable source of information is the website of the USA Government's National Cancer Institute at www.cancer.gov.  The sections devoted to leukemias give easy to read and understand descriptions of symptoms, treatment options, descriptions of treatments, and more. To locate the relevant sections, go to their home page, find the heading "All Cancer Types" and click on the link “A to Z List of Cancers”and hunt down Leukemia in the alphabetical list. There are several types listed to choose from. When you reach the pages on leukemia, look also for links to booklets under the heading 'Related Pages'. These include 'What You Need To Know About Leukemia' - you can read it online and the direct link to it is www.nci.nih.gov/cancertopics/wyntk/leukemia.

The American Cancer Society, a voluntary organisation, runs one of the most comprehensive websites on cancer and cancer-related matters on the net. Their address is www.cancer.org . There's information about leukemia on their website but because it's such a large site you need to search it out. Find and click on the link "Choose a cancer topic" on their home page and search for Leukemia in the alphabetical list that displays (there are five categories of leukemia to choose from), and click on Go. They have many other resources too for those involved with cancer so it's well worth browsing their site for additional information and support that may be relevant to your situation.

The National Comprehensive Cancer Network (NCCN) is “an alliance of 19 of the world's leading cancer centers, ... an authoritative source of information to help patients and health professionals make informed decisions about cancer care. Through the collective expertise of its member institutions, the NCCN develops, updates, and disseminates a complete library of clinical practice guidelines. These guidelines are the standard for clinical policy in oncology” - (quoted from their website). If you want to take a role in planning your course of treatment in consultation with your medical health providers then you may find these guidelines valuable.

A physician-friendly set of clinical guidelines for the treatment of some leukemias prepared by the The National Comprehensive Cancer Network (USA) can be found by going to this webpage www.nccn.org/professionals/physician_gls/default.asp, and a patient-friendly version may in the future be prepared in collaboration with the American Cancer Society and a link to it posted here: www.nccn.org/patients/patient_gls.asp

If you want to delve deeper into any aspect of cancer, a good source of information is Medlineplus at www.medlineplus.gov. It's a service of the U.S. National Library of Medicine and the National Institute of Health and it’s a big well-organised and easily searchable site. The link to the section on cancers is www.nlm.nih.gov/medlineplus/cancers.html.

Forums (message or discussion boards) and mailing lists

As mentioned above, the Leukemia and Lymphoma Society at www.lls.org has about twenty-five forums or discussion boards on leukemia and the other blood cancers, with individual posts now totalling around one hundred and fifty thousand. Go to this direct link Discussion Boards to find their forum index page.

MSN hosts at least two support groups for those with a leukemia involvement. These groups run forums plus or minus a chat room. You can find these MSN groups by going to this page http://groups.msn.com/browse.msnw?catid=101. You may see this sentence "Currently browsing English groups created on any NineMSN site worldwide" near the top of the page. If instead of NineMSN you see the name of your country, try clicking on the word English and select "All sites worldwide" from the Browsing Options. When I checked on 8th July 2008 the groups included the following:
Leukemia Survivors & Support (494 members)
Leukemia (204 members)
On 13th February 2005 there was also a group called Parents of kids with leukemia (405 members) but I was unable to find it on 8th July 2008
There are other general support groups too on the list for those with an involvement with any kind of cancer.

Mailing lists provide another way of getting in touch with others involved with leukemia and for sharing information and support. On the ACOR's Leukemia Links website you can find a detailed list of mailing lists on the net by going to this page http://leukemia.acor.org/support.html .

The Association of Cancer Online Resources (ACOR) runs or hosts more than ten lists on leukemia topics - you can find the lists by going to the home page of the ACOR website at www.acor.org and clicking on the link 'Mailing Lists Center'. You need to carefully check the whole alphabetical list because the names of some of the mailing lists relating to leukemia do not start with the word leukemia.

You may find useful forums on the American Cancer Society website www.cancer.org. The direct link to their forums index page is forums index.
 

Other websites you may find valuable

Cancerbackup at www.cancerbackup.org.uk is "The UK's leading cancer information site: your one-stop site with over 6,000 pages of up-to-date cancer information, practical advice and support for cancer patients, their families and carers."

They've recently started a social networking site called What Now at www.whatnow.org.uk "... a cancer community that really lets you get in touch with other people affected by cancer. Chat in the chatrooms, discuss on the forums, send private messages, upload videos and pictures ...".

There's also a section on the Cancerbackup website called Teen Info on Cancer "...easy to understand cancer information written for young people" and a social networking cancer community for teens. You can find links to these on the Cancerbackup home page.

If you live in Canada I suggest checking out the Canadian Cancer Society website at www.cancer.ca and searching for information and resources relevant to Canada and your local region. The website comes in both English and French language versions.

There are links to lymphedema websites on this page www.bestcancersites.com/lymphedema.

Various cancer treatment centres and medical teams around the world have set up websites to provide information on their facilities and services, and they may have quite detailed information about various kinds of cancers and their treatments. If you visit their websites it pays to be aware they are promoting their own particular facilities and treatments. Nevertheless their websites can be valuable sources of information as they are right at the coal face for treatment and research. Two good ones to explore are the Dana-Farber Cancer Institute in the USA at www.dana-farber.org and the Sidney Kimmell Comprehensive Cancer Center at Johns Hopkins in the USA at www.hopkinskimmelcancercenter.org. There's a list of USA cancer centers with links to their websites on this page of the National Cancer Institute website www.cancercenters.cancer.gov/cancer_centers/cancer-centers-names.html.

Cancercare is a large USA-based organisation "that provides free, professional support services for anyone affected by cancer." On their website at www.cancercare.org you can find some information resources, advice on such matters as financial assistance, and counseling services (online, telephone and face-to-face). There are also some online support groups or forums.

Websites created for adolescents-teens and young adults with cancer There are a small but growing number of websites created specifically for adolescents-teens and young adults with cancer. If you're in one of these age groups and you've been diagnosed with cancer, I suggest making the website of the I'm Too Young For This! Cancer Foundation at www.imtooyoungforthis.org one of your first ports of call, exploring the site, and checking out their comprehensive list of other cancer-related internet resources for adolescents-teens and young adults. Look for the heading "Support Channels" on the home page: "The channels below will connect you with hundreds of age-appropriate resources and open the door to socially network with countless thousands of young adult survivors and caregivers". I'm Too Young For This! also has a presence on several social newtworking websites including Facebook at www.facebook.com/group.php?gid=2255009406 and Myspace at www.myspace.com/imtooyoungforthis. The Foundation and website is the creation of concert pianist and composer Matthew Zachary who at the age of 21 was diagnosed with brain cancer. Not only has he continued his musical career since his diagnosis but he's turned some of his creative energies to developing the I'm Too Young For This! Foundation and website as a "...survivor-led advocacy, support and research organization working exclusively on behalf of survivors and care providers under the age of 40". Here's an estimate given on the I'm Too Young For This! website of the numbers of people in the adolescents-teens and young adult age groups affected by cancer in the USA alone. You can multiply these figures by twenty to get an idea of the numbers for the entire planet. "... there are (in the US) in excess of 1,000,000 young adults aged 15-39 currently living with through and beyond their cancer diagnosis and treatment. This statistic also includes long-term survivors of childhood cancer. Furthermore, if you add adults over 39 who were diagnosed as young adults or , we're looking at nearly two million people. ... But wait! There's more! Survivorship is not just about the patient! Caregivers matter, too! So, if you now account for young adult spouses, siblings, children and parents, we're pretty much talking eight figures of people (>10,000,000)." So if you're in the adolescents-teens or young adult age groups and you've been diagnosed with cancer at some time in your life, you aren't alone! Realtime Cancer at www.realtimecancer.org is a Canadian organisation and website for young adults involved with cancer. It was established in 2000 by Geoff Eaton who was diagnosed in 1998 at age 22 with leukemia. Among the resources on the website there are many survivor and supporter profiles or stories, a forum, news and articles, and a list of the different support groups in Canada specifically focused on young adults (look for the thread in their forum titled "Local Young Adult Support Groups!"). They also run a public education program. There's plenty on their website that will be of interest to young adults with cancer wherever they live in the world, and to those working to improve services and support for young adults with cancer. Patty has created a comprehensive website called the Pediatric Oncology Resource Center at www.acor.org/ped-onc, for parents, friends, and families of children who have or had childhood cancer. There's a wealth of information on her site, including an annotated list of links to many teen and some young adult web sites and support groups on this webpage www.acor.org/ped-onc/cfissues/teens.html. Planet Cancer is a USA-based organisation and website for young adults with cancer. It was founded in 1995 by Heidi Adams, Robin Blue and Paul Cox who were all wrestling with cancer in their twenties at the time. The Planet Cancer website at www.planetcancer.org mixes irreverance and humour with support including forums and chat, information and news and retreats, and social networking. Reducing the isolation many young adults with cancer feel is a key aspect of Planet Cancer's mission. They provide information on various ways for young adults with cancer to connect with each other, including: "A clearinghouse for [list of] young adult groups around the country [USA], including official support groups, camps and more informal gatherings. Let us know about your local group, so that we can spread the word to others in your area" ... ... a list of "Camps around the country that hold sessions specifically for young adults with cancer. Some of these are provided free of cost to cancer survivors and their families" ... ... "if you're looking to connect with another cancer survivor on a more personal basis than you could online or in a support group ... Several matching services exist for young adults going through cancer who would like to meet or talk to someone else who has had a similar experience. If you want to get REALLY personal there's also an online dating community!". Planet Cancer has recently added a valuable new resource that's bound to be popular - a social networking site for young adults with cancer at http://myplanet.planetcancer.org. Members can join groups or form their own groups, share photos and videos, participate in the forums and chat, and run their own blogs. Planet Cancer also has a presence on Facebook at www.facebook.com/group.php?gid=4614089667. The big United Kingdom based website www.cancerbackup.org.uk has a section on cancer for teenagers including a teens social networking cancer community "Write a blog, chat on the forums, send messages, make friends - you can do all this and much more ...". Look for a link to TIC on their home page or try this direct link www.click4tic.org.uk. If you explore the websites I've described above, including their links and resources pages, you'll find a variety of other websites and resources relevant to adolescents-teens and young adults with cancer.

New entry 18th April 2008: The website Chemocare.com at www.chemocare.com is described as "designed to provide the latest information about chemotherapy to patients and their families, caregivers and friends. We are here to help by supplementing what you may already have learned from your healthcare professional". If you're involved with chemotherapy either as a patient or as a supporter, caregiver or health provider, I suggest visiting this site and exploring for information that may be relevant to your situation.

There are easy-to-understand sections called "What is Chemotherapy", "Managing Side Effects", "Eating Well During Chemotherapy", "Before and After Chemotherapy", "Complementary Medicine" and "Survivor Experiences". There's also an active message board (forum) where you can share information, experiences and support.

In the section "Chemotherapy Drugs" there is an A to Z list of chemotherapy drugs which includes detailed information about what each drug is used for, how it's administered, side effects, and how the drug works.

They cast their net fairly widely. They say "Sometimes referred to simply as "chemo", chemotherapy is used most often to describe drugs that kill cancer cells directly. These are sometimes referred to as "anti-cancer" drugs or "antineoplastics." Other chemo drugs such as biologic response modifiers, hormone therapy, and monoclonal antibodies, which work in different ways to treat cancer, are included in this web-site. Today's therapy uses more than 100 drugs to treat cancer."

Chemocare.com is a website of the Cleveland Clinic Taussig Cancer Institute (a cancer hospital in the U.S.).

The website RxList at www.rxlist.com - self-described as “The Internet Drug Index providing fast, reliable information to both the consumer and the medical professional” - has information about hundreds of medicinal drugs and also active forums or discussion boards on the more popular drugs as well as forums for discussing less popular drugs and alternative therapies. The link to their forums index page is www.rxlist.com/rxboard.htm.

A good website for finding clinical trials relating to any type of cancer is the USA Government’s National Cancer Institute site at www.cancer.gov - go to their home page and click on the link Clinical Trials, or click on this direct link www.cancer.gov/clinicaltrials.

There’s another USA Government website called ClinicalTrials.gov at www.clinicaltrials.gov where you can search for trials. “ClinicalTrials.gov offers up-to-date information for locating federally and privately supported clinical trials for a wide range of diseases and conditions” and “ClinicalTrials.gov currently contains approximately 12,600 clinical studies sponsored by the National Institutes of Health, other federal agencies, and private industry. Studies listed in the database are conducted in all 50 States and in over 100 countries. ClinicalTrials.gov receives over 4 million page views per month and hosts approximately 17,000 visitors daily.”

I suggest starting your search for clinical trials with the National Cancer Institute site and then trying the ClinicalTrials.gov site. I don't know if ClinicalTrials.gov includes the same database as the NCI site but it doesn’t use the same search form so it might turn up something different anyway. Both sites include trials around the world as well as those in the USA.

You could also try the “American Cancer Society /EmergingMed Clinical Trials Matching Service ... This free Clinical Trial Matching and Referral Service is made available to American Cancer Society visitors through a collaboration with EmergingMed. ... Fill out one questionnaire and within seconds you'll know if your profile matches any clinical trials in our system. The EmergingMed database contains more than 3,000 clinical trials for treatment, prevention and early detection of cancer.” Look for the link to clinical trials on the home page of the American Cancer Society at www.cancer.org or try this direct link http://clinicaltrials.cancer.org.

If you have concerns about fertility in relation to cancer and its treatment, go to this page www.bestcancersites.com/fertility for links to websites with information and support on fertility issues.

NORD - the National Organisation for Rare Disorders - on their website at www.rarediseases.org has a database of rare disorders including many rare cancers. The database gives a list of alternative names for each disorder, some basic information about the disorder, and a list of organisations related to that disorder.

Daily Strength at www.dailystrength.org is a new website devoted to hosting support communities "for all health issues & life challenges". They say "DailyStrength was built to enable people facing life challenges to: a) simply and easily communicate their progress with friends, family, supporters, and have those people respond with encouragement and help. b) find others facing the same circumstances, and exchange experiences, treatments and even hugs within a safe community setting." Currently there are thirty-eight support communities for different kinds of cancers (including some poorly represented elsewhere on the internet), and communities for many other health issues you may be interested in such as lymphedema and fertility matters. The website is well set out and participation in communities is simple. You can post messages, and keep a journal and upload photos and videos if you wish.

There are links to nutrition and excercise guidelines on this webpage nutrition and excercise guidelines. It says in part "It would be pretty safe to say that the basic principles of healthy diets and good excercise are now well understood by scientists, and the information is available in the form of easy to understand nutrition and physical activity guidelines on the internet and in print. If we want to get our general eating and excercise habits up to world's best practice for humans going about their everyday lives on planet Earth, we can do it using these guidelines, adjusting the information to suit our particular circumstances."

For anyone considering trying an alternative treatment for cancer (one that is not mainstream medicine and scientifically demonstrated to be safe and beneficial) the website Quackwatch has a very good section on their site called “A Special Message for Cancer Patients Seeking "Alternative" Treatments”. It will help you decide whether an alternative treatment you are considering is safe and might be beneficial in some way, or whether it might be unsafe and/or fraudulent. The direct link is www.quackwatch.org/00AboutQuackwatch/altseek.html or you can find the link on their home page at www.quackwatch.org.

The American Cancer Society website has a valuable section called "Complementary and Alternative Therapies". It's buried deep in their website and difficult to find - there's no link to it from their home page. Try this direct link www.cancer.org/docroot/ETO/ETO_5.asp?sitearea=ETO or else put the word alternative into the search window on the home page at www.cancer.org and look for a link to the section in the search results. If you're thinking of trying a specific alternative or complimentary treatment you've come across on the internet or elsewhere you may find information about it in this section.

Another website that discusses the subject of alternative treatments in some detail is the website of the National Center for Complementary and Alternative Medicine at www.nccam.nih.gov.

The American Cancer Society has a very good information page giving advice on how to use the internet for finding information on cancer, and how to determine if that information is reliable. The direct link to it is Cancer Information on the Internet.

CaringBridge at www.caringbridge.org and CarePages at www.carepages.com are two websites that enable you to create your own free personalised webpages and develop your own internet community for yourself or someone you are supporting. These websites are very popular and worth checking out if you or someone you know has been visited by cancer and would like a rallying place on the internet.

Don't know what a cancer-related word or term means or need to check spelling? The National Cancer Institute (US) has an online cancer dictionary with more than 4,000 terms related to cancer and medicine at www.cancer.gov/dictionary.

You can find guides to the best websites for other cancer types on my website www.bestcancersites.com.

More suggestions please

If you know of any other good leukemia websites large or small, or active forums (message or discussion boards) or mailing lists on leukemias you would like to see added to this page, or you find any errors or broken links, please send me an email at everest@bestcancersites.com

Ed Everest, Adelaide, Australia.

Page updated 14th July 2008

top of page

Australian Leukemia Websites

The Leukaemia Foundation in Australia runs an excellent and informative website at www.leukaemia.com. They say "The Leukaemia Foundation is the only national not for profit organisation dedicated to the care and cure of patients and families living with leukaemias, lymphomas, myeloma and related blood disorders" and  “The Leukaemia Foundation has a national team of trained patient support staff who are available 365 days a year for patient care, family counselling, friendly advice, practical help or just simply understanding and personal empathy when it's needed most."

New entry 14th July 2008: In late May 2008 the Leukaemia Foundation launched a network for young adults called Revive with a website at www.teamrevive.org. They say "Currently, the Leukaemia Foundation is developing a program throughout Australia to provide education and support to young people and their friends and familes affected by blood cancer. It will focus on evidence-based research to ensure the highest quality of care is available for young adults." Revive is "... intended to be a portal for young people to access information, relevant contacts, share stories and network with each other".

Revive is in early stages of development and they are encouraging young adults and their families and friends to help define the direction of development. If you're a young adult with a blood cancer or a supporter please do explore the Revive website. There's a group of online forums where you can share information and support with fellow Aussies, and maybe contribute your own ideas to the development of Revive.

The Leukaemia Foundation also has a group of active age-unspecific forums on their website at www.talkbloodcancer.com called ‘Talk Blood Cancer’. When I visited the forum early on 18th August 2008 the forum statistics were "Total Users: 664, Total Messages: 3872 Total Subjects: 376 Total Sections: 11 Total Categories: 28".

The Cancer Council New South Wales has good information pages called ‘Understanding Acute Leukaemia’ and 'Understanding Chronic Myeloid Leukaemia' where you can read about symptoms, diagnosis and treatments  - the direct links to the pages are www.cancercouncil.com.au/editorial.asp?pageid=1047 and www.cancercouncil.com.au/editorial.asp?pageid=1362. Some of the other Cancer Council websites in Australia also have leukemia information sections. There are links to the state and territory Cancer Council sites here www.cancer.org.au/aboutus/ourmembers.htm.

Other Australian websites you may find valuable

The biggest cancer-related organisation in Australia is "Cancer Council Australia" - an umbrella organisation that encompasses a Cancer Council based in each state and territory. The link to their home page is www.cancer.org.au where there is a variety of information relating to cancer in Australia, and links to each state-based Council website.

The state-based Council websites are valuable sources of information about locally-based support groups, and a variety of other services they may offer, such as phone-in support, peer support, and discussion of different kinds of treatments. You can find links to the state and territory Cancer Council sites here www.cancer.org.au/aboutus/ourmembers.htm. If you are looking for a cancer support group in your area you may be able to locate one by searching on your state or territory Cancer Council website.

The Cancer Council New South Wales runs a large website at www.cancercouncil.com.au and it's well worth checking out whether or not you live in NSW.

The Cancer Institute (NSW) was established in 2003 by an act of parliament called The Cancer Institute (NSW) Act 2003. Some of its objectives as stated in the Act are "to reduce the incidence of cancer in the community ... to improve the quality of life of cancer patients and their carers ... to operate as a source of expertise on cancer control for the government, health service providers, medical researchers and the general community".

Their website is at www.cancerinstitute.org.au. "The Cancer Institute NSW is Australia's first statewide, government supported cancer control agency." They have developed a Cancer Services Directory which "aims to bring together information on treatment, services and support for patients and their carers". It includes the following publications:
- an online listing of cancer treatment centres in NSW;
- "A-Z Directory of Support Groups 2005 (4.9mb PDF): A list of support groups operating in suburbs, towns and cities throughout New South Wales and the services they offer";
- "Accomodation Guide 2005 (636kb PDF): A directory of accommodation providers near to all the major cancer treatment centres in New South Wales";
- "A-Z Directory of Cancer Publications 2005: Lists over 200 cancer publications, a summary of each brochure's contents and details of how to obtain them."

There are some other publications including The Cancer Prevention Plan ("This booklet provides simple guidelines to help reduce your risk of cancer"), cancer statistics for NSW, the NSW Cancer Plan 2007 - 2010, news releases, and a variety of other information for patients, researchers and health professionals.

They also run a website called CI-SCaT (Cancer Institute NSW Standard Cancer Treatments) here 
"Welcome to CI-SCaT ... One goal of the NSW Cancer Plan 2007-2010 is to ensure that clinical practice is evidence-based and research driven. This site provides clinicians with chemotherapy cancer protocols, including the evidence, cost, and drug dose calculation. In addition, patients and their carers can find detailed information on their treatments and its side-effects."

For anyone involved with cancer in Australia and looking for information on the internet, whether you've been diagnosed with cancer, or are a medical professional, a provider or a researcher, I suggest visiting the Cancer Institute NSW website and browsing or searching for information that may be helpful to you. Their site map page is at www.cancerinstitute.org.au/cancer_inst/sitemap.html.

Info and support for young adults (18 to about 40) with any kind of cancer in Australia Two new organisations aiming to help young adults with cancer and their supporters Australia-wide are the I'm Too Young For This! Cancer Foundation and The Warwick Foundation. They are working to provide information and support that meets the needs and addresses the problems of young adults with cancer, provide social networking, and encourage the medical and related professions and support services to recognise younger adults as an age group with specific and unique needs. They are aiming to reach as many young adults with cancer as possible. These are pretty awesome challenges as you can imagine, and if you can help in any way they would welcome your input. The I'm Too Young For This! Cancer Foundation (based in the USA) runs a group on Facebook called i[2]y Down Under, created by Shari Falls, at this address www.facebook.com/group.php?gid=8492024091, for young adults age 18 to 40. They say: "Sign up if you'd like to socially network with other young adults via hip, non-clinical and non-threatening events like a bbq and beer, happy hours, cocktail parties and road trips. Stupid Cancer!" "The focus of i[2]y Down Under is to promote the awareness of young adults, and to advocate on behalf of thier struggles, challenges, needs, desires and goals." There's more about the I'm Too Young For This! Cancer Foundation further up this page here (you can use your back button to return to this point). Shari has also started a i[2]y Down Under group on MySpace at http://groups.myspace.com/i2yDownUnder. New entry 24th July 2008: i[2]y now has its own Australian social networking website called i2y Australia, at www.i2yaustralia.ning.com. If you're a young adult with cancer in Australia (or a supporter) this networking website is a must to check out - joining is simple and once you're in you'll have plenty of fellow young Australians to communicate with. 'In My Shoes' - The Warwick Foundation - is a new non profit charitable organization in Australia focusing on supporting young adults (18-40) years on their cancer journey. It was founded by Samantha Lehmann who lost her 35 year old brother Warwick to cancer in 2005. "In memory of my Brother who loved music, his friends, his family and his life, I have set up The Warwick foundation, I believe together we can fight and make a difference for young adults on their cancer journey". The Foundation's website address is www.thewarwickfoundation.org.au, and the Foundation also has a presence on Myspace at www.myspace.com/thewarwickfoundation and Facebook at www.facebook.com/group.php?gid=2765515350. Among other activities the Foundation is advocating for a new model of care for adolescents and young adults with cancer, conducting fund-raising events, and connecting young adults on the cancer journey through their 'Find a mate in your shoes' program. Nikki has started an Australian networking group on the Planet Cancer website called "Australian Network for Young Adults with cancer". It's address is www.myplanet.planetcancer.org/group/australiannetwork. She says "Lets band together and push for better cancer support services in Australia for YOUNG ADULTS up to 40+ years!". She's particularly keen to hear from any young adults in Australia (and their supporters) who've been diagnosed with cancer, about their good and bad experiences of cancer treatment and support services, and their opinions as to how services for young adults can be improved. There's a forum on the group's webpages where you can post your experiences and opinions. CanTeen is a national support organisation for young people aged 12-24 living with cancer. Here's a couple of quotes from their website: "CanTeen has nine offices throughout the country, supporting thousands of young people living with cancer. Each Division has an office, dedicated (and very cool) staff, and a hugely important committee driven by CanTeen Members. They each run their own programs and camps, sometimes coming together to run joint activities and providing the opportunity for Members to broaden their peer networks." "Ranging from week-long summer camps in picturesque locations around Australia for up to 100 CanTeen Members, to locally-based programs focused on the specific needs of different groups of young people living with cancer, CanTeen offers its Members a comprehensive range of support options. Nothing reduces isolation like spending positive time with someone else living in a similar situation." You can find further details of their programs and other services they offer at www.canteen.org.au. Within their website they have established The Adolescent and Young Adult Cancer Group. They say "Adolescents and Young Adults (AYA) with cancer are the lost generation ... when it comes to research, treatment and support - not only in the Australia/New Zealand region but internationally. However, there is now growing momentum for change in the way we treat and support AYA with cancer. The AYACG is an informal interest group for people interested in receiving information and news relating to improving care for adolescents and young adults with cancer. Our primary focus is the Australia and New Zealand region, but all are welcome to join." For more info or to join the group, look for a link to "AYACG site" on Canteen's home page. The Peter MacCallum Cancer Centre in Victoria has a program for adolescents and young adults with cancer, called onTrac@PeterMac. Their website address is www.petermac.org/ontrac/. "Any young person undergoing cancer care in Victoria is eligible to access the services of the onTrac@PeterMac program". The age range of those eligible is currently 15 to 25 years. They say: "In recognition of the unmet needs of adolescents and young adults (AYA) with cancer, and as part of its commitment to advancing oncology services, the Peter MacCallum Cancer Centre has pioneered an Australian-first cancer service for AYA called onTrac@PeterMac. It aims to provide optimal treatment, care and support for AYA with cancer and ultimately improve survival rates." There's further information about OnTrac@PeterMac in an i[2]y Down Under Facebook group discussion board thread here www.facebook.com/topic.php?uid=8492024091&topic=3873. As mentioned elsewhere in this Australian websites section, in late May 2008 the Leukaemia Foundation launched a network for young adults called Revive with a website at www.teamrevive.org. They say "Currently, the Leukaemia Foundation is developing a program throughout Australia to provide education and support to young people and their friends and familes affected by blood cancer. It will focus on evidence-based research to ensure the highest quality of care is available for young adults." Revive is "... intended to be a portal for young people to access information, relevant contacts, share stories and network with each other". Revive is in early stages of development and they are encouraging young adults and their families and friends to help define the direction of development. If you're a young adult with a blood cancer or a supporter please do explore the Revive website. There's a group of online forums where you can share information and support with fellow Aussies, and maybe contribute your own ideas to the development of Revive.

There's a valuable annotated page of useful links relating to cancer on Denis Strangman’s website 'The Canberra One-Stop Cancer Web-Shop' "Dedicated to helping cancer patients and carers in the ACT and NSW Southern Area health region locate reliable web resources of interest to them." Its address is www.hotkey.net.au/~string/listing.htm - scroll down the home page to find the list of links. Some of the links it lists are to Australia-wide and international sites so it’s worth a visit wherever you are in Australia.

"Look Good...Feel Better" at www.lgfb.org.au.
"... a free community service program dedicated to helping women undergoing treatment for cancer. The purpose of the program is to help women manage the appearance related side effects of chemotherapy and radiotherapy, thereby helping to restore their appearance and self image.
Look Good...Feel Better is an initiative of the member companies of the Cosmetic, Toiletry and Fragrance Association of Australia, (CTFA) who established the program in Australia in 1990. Since that time over 32,000 women living with cancer have been helped by the program."

Camp Quality's website at www.campquality.org.au : "Camp Quality is a non profit organisation that is committed to bringing hope and happiness to every child living with cancer, their families and communities through ongoing quality recreational, educational and financial support programs." To register "You must be between the ages of 0-18 years and have been diagnosed with cancer". ... "Camp Quality is an international charity with the first office being established in 1983 in Sydney, Australia. There are 14 offices throughout Australia covering every state and territory. Over 5,000 families each year are supported by Camp Quality; they participate in our camps and other activities. Nationally there will be approximately 185 camps and recreational activities held in Australia in 2005."

Petrea King on the Petrea King Quest for Life Centre and Quest for Life Foundation website at www.questforlife.com.au says "Providing services that assist people to reconnect with their spirit and establish peace in their lives has been my passion since my recovery from leukaemia in 1984. Together with a dedicated team of health professionals, we have been providing services for people living with the challenges of serious, chronic and life-threatening illness, grief, loss and trauma since 1985."
"The Quest for Life Centre was established in its own premises in 1998 in beautiful Bundanoon in the Southern Highlands of NSW, Australia."

Elsewhere on the website it says "The Quest for Life Foundation was established in 1990 by Petrea King to further her work. Since her recovery from leukaemia in 1984, Petrea has devoted her life to counselling people, facilitating support groups, running residential programs and lecturing widely on health and healing."

You can find details of the Foundation and Centre and their upcoming programs on the website, and you can also listen to some of her past radio interviews on the ABC. 

The Gawler Foundation was established as a non-profit organisation in 1983 by Dr Ian Gawler following his recovery from bone cancer. "The Gawler Foundation is committed to an integrated approach to health, healing and wellbeing that includes the body, emotions, mind and spirit. We call this integrative medicine. Our mission is to work within a integrative medical framework to provide access to the best possible instruction and support for the implementation of self-help techniques."

They run the Yarra Valley Living Centre near Melbourne and offer both residential and non-residential programs. You can read about the Foundation and what it has to offer on their website at www.gawler.org "

The Cancer Council NSW has a good Recommended Reading List page on their website for books on cancer, and some links to cancer-related websites too. “We're often asked to recommend good books and websites about cancer. Here is our selection.” The direct link to the page is www.cancercouncil.com.au/editorial.asp?pageid=721

Can Assist (Cancer Assistance Network) formerly known as the Cancer Patients Assistance Society of NSW  "... helps cancer patients, predominately from rural NSW, by providing accommodation, comfort, financial assistance and emotional support for patients and their carers."
"For 50 years, Can Assist, the Cancer Assistance Network, has been caring for NSW cancer patients and their families through a network of volunteers and members in 37 Branches across rural and regional NSW. We own and operate three patient care facilities - Jean Colvin Hospital, which is a fully Accredited hospital and located in Darling Point - Sydney, Ecclesbourne which is a bed and breakfast facility for patients and their carers and Lilier Lodge which also caters for cancer patients and their carers and is co-owned with the Cancer Council - located in Wagga Wagga. These facilities are situated close to treating hospitals."
Their web address is www.cancerpatients.com.au. 

The Australian website Virtual Cancer Centre at www.virtualcancercentre.com has information about cancers and their treatments, and about drugs used to treat cancers. It's a resource primarily designed for health professionals, but if you are a patient or supporter researching a cancer and its treatments you may find useful information here. "Established in April 2002 virtualcancercentre.com has been compiled by Australian medical professionals and industry to be a comprehensive online cancer information, news and education knowledge hub ...". The website is part of a larger enterprise Virtual Medical Centre at  www.virtualmedicalcentre.com.

More suggestions please

If you know of any other good leukemia websites large or small, or active forums (message or discussion boards) or mailing lists on leukemias you would like to see added to this page, or you find any errors or broken links, please send me an email at everest@bestcancersites.com

Ed Everest, Adelaide, Australia.

Page updated 14th July 2008

top of page

What is leukemia?

Here's a quote from The Cancer Council New South Wales website.

"Leukaemia and related blood diseases

Leukaemia is cancer of the bone marrow, where blood cells are made. Leukaemia occurs when abnormal white blood cells multiply rapidly and spill into the blood stream. Left untreated, these leukaemic cells crowd out the healthy cells, leaving the body starved of oxygen, with little immunity to disease, and unable to 'plug' wounds in the skin and blood vessels.

There are four common types of leukaemia:
acute lymphoblastic leukaemia
chronic lymphocytic leukaemia
acute myeloid leukaemia
chronic myeloid leukaemia.

The related blood diseases are:
Hodgkin's disease
non-Hodgkin's lymphoma
multiple myeloma
aplastic anaemia.

Many other malignant diseases are associated with myeloid and lymphoid blood cells. These include myelodysplastic syndromes, essential thrombocythaemia, paroxysmal nocturnal haemoglobinuria, polycythaemia rubra vera, myelofibrosis, and hairy cell leukaemia.

Leukaemia is the most common form of childhood cancer, and non-Hodgkin's lymphoma is the sixth most commonly occurring cancer in Australia."
 

Now here's a quote from this page of The American Cancer Society website.

"The Different Types of Leukemia
 There are four major types of leukemia:

• acute vs. chronic
• lymphocytic vs. myelogenous

Acute means rapidly growing. Although the cells grow rapidly, they are not able to mature properly.

Chronic refers to a condition where the cells look mature but they are not completely normal. The cells live too long and cause a build-up of certain kinds of white blood cells.

Lymphocytic and myelogenous (or myeloid) refer to the two different cell types from which leukemias start. Lymphocytic leukemias develop from lymphocytes in the bone marrow. Myelogenous leukemia (sometimes referred to as myelocytic) develops from either of two types of white blood cells: granulocytes or monocytes.

By looking at whether a leukemia is acute or chronic and myelogenous or lymphocytic, most cases of leukemia can be sorted into one of the four main types shown in the table below. And, while both children and adults can develop leukemia, certain types are more common in one age group than in another.

The table below shows the four major types of leukemia and their distribution among children and adults.

Acute lymphocytic leukemia (ALL)
Affects children and adults
More common among children
Accounts for slightly more than half of all cases of childhood leukemia

Acute myelogenous leukemia (AML)
(also called Acute nonlymphocytic leukemia: ANLL)
Affects children and adults
Accounts for just under half of cases of childhood leukemia

Chronic lymphocytic leukemia (CLL)
Affects adults
Almost twice as common as CML

Chronic myelogenous leukemia (CML)
Affects mostly adults: very rare in children
About half as common as CLL"

top of page

Disclaimer

End of webpage

*****************************************************************

****************************************