A guide to the world’s
best lymphoma
websites for information
and support
This is a summary of the best websites I could find around
the world for the lymphoma group of cancers, both for general
information (symptoms, treatment options, research, etc) and for
forums (message or discussion boards) and other kinds of support.
These cancers include Hodgkin's disease (Hodgkin's lymphoma) and
non-Hodgkin's lymphomas. And for those living in Australia there
is information about Australian websites here.
Most links on this page open in a new window or tab.
If you want to find an all-encompassing website devoted to
lymphomas and the other blood cancers, then the website of The
Leukemia and Lymphoma Society “committed to fighting all
blood cancers” is the number one place to go. There are
many services offered on their 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 now 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.
One of the best websites devoted to lymphomas is Mike
Barela's “Lymphoma Information Network” at www.lymphomainfo.net/lymphoma.html.
“Your comprehensive guide to Hodgkin’s and
Non-Hodgkin’s Lymphoma” “These pages are for
those seeking information on Hodgkin's and Non-Hodgkin's
Lymphoma. Welcome! This site strives to do three things: put a
bit of humanity and understanding to this disease, to gather
lymphoma information and resources in one place, and to present
information in an easy to understand and logical
format.”
Mike's site was started in 1994 and he has built an
extensive amount of information on lymphomas. He is a survivor of Hodgkin’s Disease.
Robert Martin’s website “Remission.org A
travel guide for your hodgkin’s journey” at www.remission.org is another
great website. There's plenty of information about
Hodgkin’s Disease and plenty of Robert’s personal
experience with the disease (he was diagnosed with Hodgkin's
Disease in 1997 at the age of forty-four). It’s a website
well worth exploring.
Another excellent website with plenty of information, this
one devoted to Non-Hodgkin’s Lymphoma, is "Non-Hodgkin's
Lymphoma Cyberfamily” at www.nhlcyberfamily.org.
“We are the Non-Hodgkin's Lymphoma Cyberfamily. We are a
worldwide family of patients and caregivers who share
Non-Hodgkin's Lymphoma in common. ... Our group will guide you
through all the stages of dealing with lymphoma. We will support
you, educate you, and help you with your
questions.”
The Lymphoma Research Foundation runs a website at www.lymphoma.org. “The
Lymphoma Research Foundation (LRF) is the nation’s [USA] largest
lymphoma-focused voluntary health organization devoted
exclusively to funding lymphoma research and providing patients
and healthcare professionals with critical information on the
disease. LRF’s mission is to eradicate lymphoma and serve
those touched by the disease.”
There’s plenty of information on lymphomas, various
support options including a telephone and an email helpline, a
fairly extensive section on useful links, a large monthly
newsletter, and they run a very active forum or message board on
another website - WebMagic's Lymphoma.com. The direct link to
the message board is
http://forums.webmagic.com/ubbthreads/ubbthreads.php?Cat=&C=1.
A valuable source of information is
the website of the U.S. Government's National Cancer
Institute at www.cancer.gov. There are easy to
read and easy to understand descriptions of what these cancers
are, how they are diagnosed, treatment options, descriptions of
treatments, and more. To locate the relevant sections, 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 the relevant cancer in the alphabetical list.
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. It covers all forms of cancer, there’s a wealth of information on cancer and cancer-related matters, and some forums or discussion boards and two chat rooms. To find their information on lymphomas, go to their home page, find and click on the link "Choose a cancer topic" and search for whichever lymphoma you are involved with from the alphabetical list that displays, and click on Go.
It's also well worth browsing their site for
additional information and support that may be relevant to your
situation.
The website Cancerbackup at www.cancerbackup.org.uk has a section on Hodgkin lymphoma and its treatment beginning on this page www.cancerbackup.org.uk/Cancertype/LymphomaHodgkin, and a section on non-Hodgkin lymphoma and its treatment beginning on this page www.cancerbackup.org.uk/Cancertype/Lymphomanon-Hodgkin. 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 organisation "Patients Against Lymphoma" on its website at www.lymphomation.org provides a mine of information about a wide variety of topics relating to lymphomas and their treatments, and links to more information. If you're looking for information on any aspect of lymphomas then this website is a must to explore. "Day or night, and without leaving home, patients can find answers in total privacy and without concern about asking a “dumb” question."
They say "Patients Against Lymphoma was founded in 2002 by patients and caregivers directly affected by lymphomas ... . We provide timely access to evidence-based information on lymphoma and its treatments; and engage the research community - providing patient perspectives on the direction of clinical research and the design of clinical trials. We also help patients and caregivers to more critically evaluate the strengths and weaknesses of medical information; and help scientists and drug sponsors to see clinical trial design from the patient perspective."
There's a social networking group called Lymphomas on the young adult website Planet Cancer (http://myplanet.planetcancer.org) on this page http://myplanet.planetcancer.org/group/lymphomas. If you've been diagnosed with lymphoma and you're in your twenties or thirties I suggest checking Planet Cancer and this group out.
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.
The NCCN have teamed up with the American Cancer Society to
produce patient-friendly versions in English and Spanish for
several of the most common types of cancer including
Non-Hodgkin's Lymphoma. The web address of the NCCN is www.nccn.org and the direct link to the
patient friendly guidelines for Non-Hodgkin's Lymphoma is
www.nccn.org/patients/patient_gls/_english/_non_hodgkins/contents.asp.
The physician-friendly clinical guidelines for the treatment of
lymphomas can be found by going to this webpage www.nccn.org/professionals/physician_gls/default.asp.
To see some videos or webcasts on various lymphoma topics
(there are transcripts to read too) try this Healthology website
www.healthology.com/focus_index.asp?b=healthology&f=lymphoma_overview.
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,
the link to their section on Non-Hodgkin's lymphoma is www.nlm.nih.gov/medlineplus/lymphoma.html
and there is a section on Hodgkin's Disease here www.nlm.nih.gov/medlineplus/hodgkinsdisease.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. MedlinePlushttp://www.bestcancersites.com/lymphoma/
is updated daily and can be bookmarked at the URL:
medlineplus.gov."
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
now totalling over one hundred and fifty thousand. Go to this direct link
Discussion Boards to find their forum index page.
On WebMagic's Lymphoma.com there's a very active
forum (message board) on Hodgkin's Disease and Non-Hodgkin's
Lymphoma with a total of over three hundred and fifty thousand messages posted by August 14th 2008.
MSN hosts support groups for those with a lymphoma
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. 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 cancers and for
sharing information and support. The Association of Cancer Online
Resources (ACOR) runs or hosts lists on blood cancers - 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'. Their lists include (as at 14th August 2008):
HODGKINS - Hodgkin's Lymphoma Mailing
List (262 subscribers);
NHL Non-Hodgkin's Lymphomas Support
Group (279 subscribers);
MANTLECELL Mantle Cell Lymphoma
discussion group (254 subscribers);
PED-LYMPHOMA - Parents of Children with
Lymphoma (cancer) (49 subscribers).
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.
There is a mailing list run by the Non-Hodgkin's Lymphoma
Cyberfamily website located at this address: http://health.groups.yahoo.com/group/nhl
. On 14th August 2008 it had 1752 members. “Founded in
1996 our list is for Non-Hodgkin's lymphoma patients and care
givers alike. Our purpose is to provide support, caring,
information about lymphoma, and living with lymphoma. Discussions
cover the full range of standard treatments, clinical trials, and
technological advances in the treatment of non-hodgkin's
lymphoma. The focus is on modern scientifically based medicine
but discussions occasionally include alternative and
complementary treatments”
They run three other mailing lists, and I have quoted the
information below about these mailing lists from their
website.
"There is another Email list which also is a great help for
those dealing with low grade lymphoma. nhl-low was set up as an
information only mailing list to better inform people whose lives
have been affected by low grade lymphoma. Information is gathered
from a variety of sources by list moderators, posted, then
automatically archived to a web site for later retrieval. List
members may not post, so the volume of mail on this site is very
low. Please visit the following website for past posts and
instructions on how to subscribe:
http://health.groups.yahoo.com/group/nhllow/
A third list was set up to address the need for patients of
non-Hodgkin's lymphoma with a focus on alternative and
complementary treatments. For more information and instructions
on how to subscribe:
http://health.groups.yahoo.com/group/nhl-info/
There is also a regional NHL e-mail group specifically for
the people of the United Kingdom and Ireland. It will not take
the place of the main NHL list, but will relate specifically to
the exchange of local information about hospitals, specialists,
research and trials. To join the nhl-uk group:
http://health.groups.yahoo.com/group/nhl_uk
."
If you go to this address it says "Non Hodgkins Lymphoma
Information & Support including Leukaemia's. For patients and
their friends and carers. UK bias to reflect the National health
service in Britain - but all are welcome."
Another mailing list (started in 1995) is “Hodgkins
Disease Mail List” at
www.deltronix.com/public/hodgkins/home.htm
and it has an associated chat room at www.deltronix.com/public/hodgkins/CHATTER.htm
"Daily chats held at 7pm Pacific (California) Time"
More lymphoma websites
You can find pages of links on the sites I have mentioned
above to further your explorations and find sites of particular
relevance to your situation.
There is a good list of links on Robert Martin’s
website Remission.org
that's worth browsing through. The direct link is www.remission.org/links.shtml.
If you have an involvement with Burkitt's Lymphoma there is
a website called Burkitt's Lymphoma Resources at www.burkitts.org. They say "A type
of non-Hodgkin's lymphoma that most often occurs in young people
aged 12-30" and "This site aims to provide resources on Burkitt's
Lymphoma, a very rare form of cancer with about only 300 new
cases a year in the United States. Burkitt's Lymphoma, rare in
most of the world, is the most common childhood cancer in Central
Africa ... Burkitt's lymphoma is one type of a group of malignant
diseases know as the Non-Hodgkin's Lymphomas (NHL). These
lymphomas are very similar to the leukemias. The type of
malignant cell present is called a B-cell and Burkitt's is often
referred to as a B-cell lymphoma or leukemia."
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.
World General Cancer-Related Websites
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 lymphoma websites large or
small, or active forums (message or discussion boards) or mailing
lists on lymphoma 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
top of page
Australian Lymphoma Cancers
Websites
The Leukaemia Foundation in Australia
runs an excellent and informative website at www.leukaemia.org.au. 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 a good information page called
‘Understanding Hodgkin's Disease’ where you can read
about symptoms, diagnosis and treatments - the direct link to it
is www.cancercouncil.com.au/editorial.asp?pageid=1190.
And another information page called 'Understanding Non-Hodgkin's
Lymphoma' at www.cancercouncil.com.au/editorial.asp?pageid=71
. Some of the other Cancer Council websites in Australia may also
have lymphomas information sections. There are links to
the state and territory Cancer Council sites here www.cancer.org.au/aboutus/ourmembers.htm.
As mentioned above, physician-friendly clinical guidelines
for the treatment of lymphomas prepared by The National
Comprehensive Cancer Network (USA) can be found by going to this
webpage www.nccn.org/professionals/physician_gls/default.asp
, and patient-friendly versions 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 go to this Cancer Council Australia webpage www.cancer.org.au/Healthprofessionals/clinicalguidelines/Lymphoma.htm, you can find a link to clinical guidelines for the treatment of lymphoma in Australia.
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.
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.
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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.
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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 lymphoma cancer websites large or
small, or active forums (message or discussion boards) or mailing lists
on lymphoma cancer 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 12th August 2008
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