Ed Everest's Guide to the World's Best Cancer Websites
The home page address is www.bestcancersites.comTHE BEST MULTIPLE MYELOMA WEBSITES
and other Myelomas
The address of this page is www.bestcancersites.com/myelomaThis is a summary of the best websites I could find around the world for myeloma cancers, 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.
All links on this page should open in a new window or tab.
The International Myeloma Foundation has an excellent website devoted to multiple myeloma, where you can find a wide range of information and support services. "The international Myeloma Foundation is here to help everyone battling multiple myeloma - patients, families, friends, caregivers and the medical and scientific communities." It's a must site to visit and explore if you have an involvement with myeloma.
One of the features of their website is a list of support groups around the world. "The IMF is often asked by patients if we know of support groups in their areas where they can meet others dealing with myeloma. There is a worldwide network of more than 100 myeloma support groups that hold regular meetings for members of the myeloma community. ... Use the menu below for a list of the groups that we are aware of in your area." Here's the direct link to the relevant page - http://myeloma.org/main.jsp?type=tab&tab_id=6 .
The website of The Leukemia and Lymphoma Society “committed to fighting all blood cancers” is an all-encompassing site devoted to the so-called blood cancers including multiple myeloma. 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 thirty forums or discussion boards, with individual posts totalling over one hundred and fifty thousand. The link to their home page is www.lls.org and the direct link to their forum index page is Discussion Boards.
A valuable source of information is the website of the USA Government's National Cancer Institute at www.cancer.gov. The section devoted to myeloma gives an easy to read and easy to understand description of what the cancer is, how it is diagnosed, treatment options, descriptions of treatments, and more. To locate the relevant section, go to their home page, find the heading “Types of Cancer” and click on the link “A to Z List of Cancers” and hunt down 'Myeloma, Multiple' in the alphabetical list. Or try this direct link to the section called Multiple Myeloma/Other Plasma Cell Neoplasms www.nci.nih.gov/cancertopics/types/myeloma .
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 myelomas 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 Multiple Myeloma in the alphabetical list that displays, and click on Go. Their website has 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 website of the Multiple Myeloma Research Foundation (MMRF) “the world’s number one private funder of research” into multiple myeloma, has a lot of information including treatments, research and clinical trials. The address is www.multiplemyeloma.org.
The website Cancerbackup at www.cancerbackup.org.uk has a section on myeloma and its treatment beginning on this page www.cancerbackup.org.uk/Cancertype/Myeloma. Cancerbackup is a valuable website to explore whereever you live in the world and it also has information specific to the United Kingdom where it's based.
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 version of the NCCN guidelines for myelomas 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.aspAmyloidosis is an uncommon condition in which amyloid protein fibrils build up in one or more organs in the body, and it can occur in association with multiple myeloma. There are a few websites set up by survivors and supporters around the world that provide information and support for those involved with amyloidosis and give contact details for support groups.
In Australia the Reid family has formed Amyloidosis Australia Inc, a registered charity, and they have created an excellent website at www.amyloidosisaustralia.org. As well as providing plenty of information, they have a very good links page. I won't repeat the links they give - rather I recommend you visit their website, and use their links page to find the other amyloidosis and related websites on the net.
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 and the link to their section on multiple myeloma is www.nlm.nih.gov/medlineplus/multiplemyeloma.html.
Here’s some background from their home page:
Medlineplus - “A service of the U.S. National Library of Medicine and the National Institute of Health”
“Welcome to MedlinePlus, a goldmine of good health information from the world's largest medical library, the National Library of Medicine. Health professionals and consumers alike can depend on it for information that is authoritative and up to date. MedlinePlus has extensive information from the National Institutes of Health and other trusted sources on over 650 diseases and conditions. There are also lists of hospitals and physicians, a medical encyclopedia and a medical dictionary, health information in Spanish, extensive information on prescription and nonprescription drugs, health information from the media, and links to thousands of clinical trials. MedlinePlus is updated daily and can be bookmarked at the URL: medlineplus.gov. There is no advertising on this site, nor does MedlinePlus endorse any company or product.”Forums (message or discussion boards) and mailing lists
As mentioned above, the Leukemia and Lymphoma Society at www.lls.org has about thirty forums or discussion boards, with individual posts totalling over one hundred and fifty thousand when I checked on 12th August 2008. One of their forums is called "Living with Myeloma". Go to this direct link Discussion Boards to find their forum index page.
The American Cancer Society runs a forum on multiple myeloma but it only has an occasional post on it. The direct link to it is www.acscsn.org/Forum/Discussion/?msgrid=45. The website does have other forums you may find useful - the link to their forums index page is
www.cancer.org/asp/messageBoards/msg_global.asp?navToScreen=msg_0_5&sitearea=Mailing lists provide another way of getting in touch with others involved with myelomas and for sharing information and support. The International Myeloma Foundation runs two mailing lists hosted by the Association of Cancer Online Resources (ACOR). "The IMF, with the help of the Association of Cancer Online Resources, created a myeloma mailing list and an amyloid mailing list to help facilitate information exchange and support in an open forum. We are providing these vehicles in response to many requests for this type of facility."
The direct links to these mailing lists are www.acor.org/myeloma.html
for the list MYELOMA Multiple Myeloma Support List (1708 subscribers as at 12th August 2008), and www.acor.org/amyloid.html for the list AMYLOID The amyloid Online Support Group (589 subscribers as at 12th August 2008). Or 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'. It may also be worth searching through their index of mailing lists to look for any other lists that may be relevant to your situation.World General Cancer-Related Websites Other websites you may find valuableThe United Kingdom website Macmillan Cancer Support at www.macmillan.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." (I've borrowed that quote from the former United Kingdom website called "Cancerbackup" which has now been incorporated into the Macmillan website - if you're looking for Cancerbackup on the net it's now Macmillan Cancer Support.)
They have an online community including forums at http://community.macmillan.org.uk/whatsnew/default.aspx
Macmillan Cancer Support is one of the biggest and most comprehensive cancer websites worldwide and it covers most cancer types. I suggest adding it to your list of reliable sources of information about cancers and their treatment, along with the USA's National Cancer Institute website www.cancer.gov and the American Cancer Society's website www.cancer.org.
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.Fatigue is a common side-effect of cancers and their treatments. If you or someone you know is having problems with cancer-related fatigue you may find it worthwhile browsing some of the information and discussion about fatigue due to cancers and their treatments on some of the best cancer websites. Here are four reliable sites where there are articles or discussions on fatigue. The quickest way to find their info is to put the word fatigue into the search windows at the tops of their home pages and see what you can find: http://www.lls.org/hm_lls
http://www.breastcancer.org
http://www.cancer.org
http://www.cancer.govVarious 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!
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.
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 PC Re-Orientations and other retreats in the US, networking groups, one-to-one support, and events. To find this info, look for the link to "Connect" at the top of the Planet Cancer home page at http://planetcancer.org.
Planet Cancer has recently launched a social networking section of their website for young adults with cancer, at http://myplanet.planetcancer.org. It's already become popular - not surprising as it's running on state-of-the-art software and it's the best social networking website of it's kind I've yet come across.
Members can join groups or form their own groups, share photos and videos, participate in the forums and chat, and run their own blogs. I counted seven ways to interact on Planet Cancer: - participate in the Planet Cancer discussion forum - join groups and post messages on the group walls and forums - post messages on each others My Page walls - post comments on members' blog entries - exchange private messages with your friends - join in chat sessions with one or more members - post comments on members' photos
About the only means of communication missing is carrier pigeons.
Planet Cancer also has a presence on Facebook at http://www.facebook.com/group.php?gid=33960288752
Young Adult Cancer Canada at www.youngadultcancer.ca (formerly 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, news and articles, and a list of the different support groups in Canada specifically focused on young adults. They also run a public education program. There's plenty on their website that will be of interest to young adults with cancer wherever you 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.An initiative of the Lance Armstrong Foundation (website at http://www.livestrong.org) is the LIVESTRONG Young Adult Alliance.
"The LIVESTRONG Young Adult Alliance is a coalition of organizations with the goal to improve the survival rates and quality of life for young adults with cancer between the ages of 15 and 40. The Alliance is committed to promoting research and the investigation of the problem, serving as a voice for the issue and promoting effective solutions."
"We formed the LIVESTRONG Young Adult Alliance with the knowledge that unity is strength - by working together we can raise awareness and effect positive change for young adults with cancer."
Information about the LIVESTRONG Young Adult Alliance starts here http://www.livestrong.org/site/c.khLXK1PxHmF/b.2661399/k.71A4/Young_Adult_Alliance.htm Their resources section starts here http://www.livestrong.org/site/c.khLXK1PxHmF/b.4659829/ and their Community Resources page is here - it's got some good links to check out http://www.livestrong.org/site/c.khLXK1PxHmF/b.4659841/k.246/Community_Resources.htm
The big United Kingdom based website Macmillan Cancer Support at www.macmillan.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 "Teen info on cancer" at the bottom of 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.
If you are a US citizen and "you or someone you know needs assistance with their insurer, employer and/or creditor regarding insurance, job retention and/or debt crisis matters relative to their diagnosis of life threatening or debilitating diseases", then the Patient Advocate Foundation at www.patientadvocate.org may be able to help you. Their mission statement says "Patient Advocate Foundation is a national non-profit organization that serves as an active liaison between the patient and their insurer, employer and/or creditors to resolve insurance, job retention and/or debt crisis matters relative to their diagnosis through case managers, doctors and attorneys. Patient Advocate Foundation seeks to safeguard patients through effective mediation assuring access to care, maintenance of employment and preservation of their financial stability."
They can also make available some valuable resources relating to financial management. "Patient Advocate Foundation seeks to empower patients to take control of their health care. Case managers work with patients to discover local, state, and federal programs that provide assistance for their individual needs. PAF has produced six major publications, several informational brochures, and several special sections devoted to certain health related topics to assist in this goal. Our case managers have also compiled a list of valuable resources that address several topics that you may find beneficial" (quoted from their website).
You might also be interested in looking at their "Empowering Events & Programs Join thousands of Americans from across the nation by participating in PAF sponsored empowering events."
Here's something to smile about I found on their website - a wonderful piece of roundabout writing: "Oncologists must become engaged in the financial realities that patients face in order to insure the integrity of the patient's future financial stability."
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 myeloma websites large or small, or active forums (message or discussion boards) or mailing lists on myeloma 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
Australian Myelomas 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".
As mentioned in the world section above, amyloidosis is an uncommon condition in which amyloid protein fibrils build up in one or more organs in the body, and it can occur in association with multiple myeloma. In Australia the Reid family has formed Amyloidosis Australia Inc, a registered charity, and they have created an excellent website at www.amyloidosisaustralia.org. There you can find plenty of information, and links to other amyloidosis websites around the world. You can also find contact information for support groups they are helping to set up around Australia.
They say on their website "Statisticians say there are 8 in 1 million diagnosed worldwide every year. That means approximately 160 people in Australia should be diagnosed with Amyloidosis every year! Where are they?" If you have any involvement with amyloidosis and you would like to participate in the development of support services for those diagnosed with the condition in Australia, I'm sure the Reid family would love to hear from you.
Australia General php page 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.
New entry 30th March 2009: Cancer Connections at www.cancerconnections.com.au is an online community created by Cancer Council New South Wales offering support and information to all Australians affected by cancer.
A feature of the site is their forums (discussion boards) where members can share support and exchange information and experiences. As well as general forums for Australians affected by cancer there are forums specifically dedicated to young adults, survivors, and partners, family & friends.
They've just launched a Young Adults section of the website which includes "news about upcoming events for young adults with cancer and links to our In Focus topics designed specially for young adults, covering issues like sexuality, nutrition, complementary therapies and treatment side effects".
Another section is for partners, family & friends "A place for partners, family members and friends of people with cancer to connect, chat and find resources specifically for carers".
There's also a section for survivors: "Finished cancer treatment and ready to move on? Check the latest survivors discussions and blogs or come and share your own experiences at our online forum specially created for cancer survivors and their carers, family, friends and work colleagues".
The website's Resources page details some of the services and resources offered by Cancer Council New South Wales including a confidential support and information service helpline you can access by telephone or email.
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.
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 myeloma websites large or small, or active forums (message or discussion boards) or mailing lists on myeloma 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 currently being updated 12th August 2008
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