Leukemia: Information, Research, Support
Leukemia is the most common blood cancer. According to the National Cancer Institute, about 29,000 adults and 2,000 children are diagnosed with the disease each year. If you or someone you love is affected by leukemia, you'll want answers. Having an understanding of the disease is to your advantage, and fortunately, the Internet hosts a wealth of reliable leukemia information.
Expand All Guide SectionsWhat is leukemia?
The best sources on the Web for general information on leukemia are reputable medical organizations, such as the Mayo Clinic and the National Cancer Institute. You don't have to be a doctor or health professional to understand the information on these sites; most provide thorough overviews of the disease written to be accessible to the general public.
Dulcinea's Insight
- Many of these Web sites offer free PDF pamphlets, booklets, or informational sheets that you can easily print for reference. You might also want to look for a toll-free number or "Contact Us" page, since it's usually possible to request printed materials, too. An example provided on MedicineNet.com is The Cancer Information Service (1-800-4-CANCER), where readers can learn about the rare forms of leukemia.
- If you're unfamiliar with the medical terms you encounter in your research, consult a medical dictionary for reference. The dictionary at the University of Newcastle's CancerWeb is a good place to start.
Dulcinea's Picks
For overviews ...
The Leukemia and Lymphoma Society
is a great place to start if you're just beginning your leukemia research. Medical terms found in the text are hyperlinked to the site's glossary, so you can familiarize yourself with terms like "monocytes" and "anemia" as you read. The "What is Leukemia?" section has quite extensive overviews of the four types of leukemia: Acute Myelogenous Leukemia (AML), Acute Lymphocytic Leukemia (ALL), Chronic Myelogenous Leukemia (CML), Chronic Lymphocytic Leukemia (CLL).
National Cancer Institute
is associated with the U.S. National Institutes of Health. The site has information for both the patient and the medical professional, so health-savvy folks or those knowledgeable about medicine can read the same information that's being given to physicians. Included on the Web site is a dictionary of cancer terms and news about the latest clinical trials related to leukemia.
InteliHealth
is designed to provide medical advice and information from trusted medical sources, including Harvard Medical School and Columbia University College of Dental Medicine. The leukemia portion of the Web site was reviewed by Harvard Medical School, and it includes a brief but thorough overview of the disease. The links to additional info are particularly useful.
Mayo Clinic
's leukemia section is written in simple, easy-to-understand language that clearly explains terms and jargon. This is the ideal site for someone who wants to learn about leukemia without wading through unfamiliar medical terms. You'll find information about the signs and symptoms, risk factors, screening, and treatment of the disease.
MedlinePlus
has useful diagrams to supplement the article, perfect for those who prefer visual learning. Moreover, the narration and associated animations make this a good learning tool for children. The slides introduce issues like symptoms, diagnosis, and treatment, as well as facts about chemotherapy and radiation treatments. Note that the information requires a Flash Player.
MedicineNet
's leukemia section includes a glossary, some black-and-white pictures, and an organized menu of topics. This site is best for those who want a clear, illustrated overview of leukemia with a moderate amount of medical terminology. Risk factors, symptoms, and treatments are covered, and you'll also find information about the side effects of leukemia treatment.
WebMD
's leukemia section is extremely detailed, and includes signs and symptoms, risk factors, treatment, and prevention. The information about the medications and surgery for leukemia is particularly detailed.
Symptoms and Diagnosis of Leukemia
The symptoms that characterize leukemia can vary based on the patient, but frequent infections, weakness, bone and joint pain, and swollen lymph nodes are commonly experienced effects. These sites describe the common signs and symptoms of leukemia, and provide accounts of how it is diagnosed.
Dulcinea's Insight
- Leukemia generally requires multiple tests to diagnose. These Web sites include information about the various tests your doctor may perform. Since different physicians and different types of leukemia require different tests, patients may find they have to undergo a variety of tests before receiving a final diagnosis.
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For an overview of symptoms and diagnosis ...
The Leukemia & Lymphoma Society
has detailed information about symptoms for each subtype of leukemia. Click on the type of leukemia to find the symptoms for that specific disease. The page will also have a "Diagnosis" link for each type. Find out what type of tests are used to diagnose the disease, as well as details about the tests and how the results are interpreted.
For symptoms ...
CureResearch.com
breaks down the symptoms of leukemia by systems and body parts, like the "Central Nervous System" and "Lymph Nodes." The symptoms include links to more detailed information about the condition. The margins are littered with Google ads at the top, but keep scrolling down and you'll find a comprehensive list of symptoms.
For diagnosis ...
MedicineNet.com
gives an overview of the different types of tests your physician might use to diagnose leukemia. The Web site includes links to more information about the tests, such as how they're performed and how samples are obtained.
OncologyChannel.com
includes scientific information about leukemia diagnostic tests, such as specific measures of red blood cells. The definitions of the tests are fairly detailed and may include terms that require a layman to use a medical dictionary.
Treatment for Leukemia
Leukemia treatments vary depending on the type of leukemia, the stage of the disease, and the patient's individual factors. Nonetheless, there are some common treatments, such as chemotherapy, biological therapy, and radiation therapy that are used for leukemia. In some cases, the patient may be given various treatment options, each with different side effects and a different prognosis. Learning about these procedures can help prepare for this decision.
Dulcinea's Insight
- The sites in this section tend to overview the variety of treatment options available to patients with leukemia. Researching individual treatments will yield deeper information about the preparation and procedure specific to that treatment.
- Check for a "Printer Friendly" icon if you want to print the page so it's available when you speak with your physician.
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MD Anderson Cancer Center
at The University of Texas provides a simple overview of leukemia treatment, written for the layman. The Web site lists various treatments, and explains how these procedures are performed in easy-to-understand terms.
The Leukemia & Lymphoma Society
Web site includes various types of leukemia treatment, as well as detailed information about the procedures. Click on each treatment type to learn how the procedure is performed, how to prepare for it, and how it treats the disease.
National Cancer Institute
provides treatment facts for both the patient and the physician. The patient information includes links to definitions of medical jargon. The physician information cites medical journals and papers.
OncologyChannel.com
gives detailed information about leukemia treatments for each of the subtypes of the disease. Although the descriptions of the treatments include a fair amount of scientific jargon, the Web site may be useful for those who have already identified a specific type of leukemia.
Leukemia Hospitals
Although many hospitals treat leukemia, some are particularly renowned, or provide special services. Teaching hospitals, for example, often offer participation in clinical trials that are unavailable at other facilities. Finding a hospital with the right fit can be difficult. Patients must consider factors such as distance, expense, and medical insurance. Moreover, many excellent hospitals choose patients based on specific criteria, such as the stage of the disease.
Nonetheless, it's a good idea to carefully research your various hospital options before committing to one. Consider visiting a few and getting multiple opinions from physicians.
Dulcinea's Insight
- Look for links to "Make an Appointment" or "Patient Referral" to find out how to become a patient at these hospitals. You'll either get a phone number or detailed information about the referral process.
- In general, children's hospitals tend to have more non-medical programs for kids, such as day camps for kids with cancer or other entertainment-type events. If you're a parent with a child who has leukemia, look for links to other services offered by the hospital.
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For everyone ...
MD Anderson Cancer Center
at The University of Texas boasts "the largest practice of leukemia subspecialists in the world." They treat adult leukemia patients with all different types of leukemia. The Web site includes an online database of the hospital's open clinical trials for all types of cancer.
Johns Hopkins
hospital in Baltimore, Maryland, is a renowned teaching and research hospital. All four types of leukemia are treated at this hospital, so the facility has both adults and children as patients. The hospital uses an individualized approach to treatment and regularly runs clinical trials. Click on "Making an Appointment" for detailed information about getting an appointment at this hospital.
Memorial Sloan-Kettering Cancer Center
is based in New York, and their leukemia team includes more than 30 experts in the field. The hospital performs various clinical trials that are open to patient participation. Look for the "Making an Appointment" button toward the top of the page to get information about becoming a patient at this hospital.
Mayo Clinic
has three locations: Arizona, Florida, and Minnesota. Adults with leukemia are treated at all locations, but children are mostly treated in Minnesota. The Web site includes "Patient Stories," so potential patients can get a greater understanding of the disease and how it will affect their life. The Mayo Clinic also offers information about their clinical trials on their Web site.
For children only ...
St. Jude's Children's Research Hospital
is probably one of the best-known children's hospitals. The Web site includes a phone number and e-mail address that parents can use to contact the hospital if they want their child to be treated. This research hospital was instrumental in combination therapy for children with leukemia, and it continues to research new ways to cure and control the disease.
The Children's Hospital of Philadelphia
was ranked the best pediatric hospital in 2007 by U.S. News & World Report. There are resources for the family-such as psychosocial services and financial assistance-as well as information about their research on their Web site. Simply click on "Contact Us" to get the phone numbers you'll need to speak with a hospital associate. Or select, "Request an appointment," then fill out and submit the form online form.
Children's Hospital Boston
treats children and adolescents with leukemia. Their staff members are experts in the field of childhood leukemia, and the Web site includes detailed information about the physicians. Check out "Referral Process" for instructions about how to get your child treated at this hospital.
Lucile Packard Children's Hospital
in California has experts on staff who specialize in bone marrow transplant and stem cell transplant. The Web site includes information about the physicians and services offered by the hospital. The site also offers a brief overview of the hospital's current research. If you'd like your child to be admitted, click on "Contact Us" to find a phone number for the Parent Referral Center.
The Children's Hospital in Denver
offers a full range of services, and their Center for Cancer and Blood Disorders treats more than 870 patients each year. The Web site offers a variety of links to resources, including cancer associations and a health library.
Clinical Trials for Leukemia
Clinical trials allow patients to test new medications or treatments that are not yet available through traditional sources. In some cases, these groundbreaking drugs or surgeries can make a difference in the outcome of the disease.
Dulcinea's Insight
- Although these Web sites list clinical trials from a variety of hospitals and research centers, none of them are comprehensive. As a result, it's smart to check them all on a regular basis.
- Look for a link to e-mail updates or an e-mail newsletter. Give them your e-mail address and you'll be notified about newly available and upcoming clinical trials.
- Most research hospitals offer clinical trials. You can learn what trials are being offered by visiting the hospital Web site.
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For an introduction to clinical trials ...
MedlinePlus
offers a detailed introduction to clinical trials. If this is your first experience with a disease, you may be unsure if a clinical trial is right for you. Check out their interactive tutorial to find out the basics of clinical trials.
For finding clinical trials ...
Acurian
offers a search feature for clinical trials. Click to search their database, then choose leukemia from their list. You can also narrow your search by state. The results include a very basic overview of the trial, some information about who may qualify, as well as contact information for the institution performing the research. Join the Web site (membership is free) and you'll be notified by e-mail about new trials.
National Cancer Institute
offers a search for clinical trials. The search is quite specific, as you choose the type of cancer as well as the stage or subset. You can also filter by the type of trial and its location. International trials are also included.
ClinicalTrials.gov
is a service of the U.S. National Institutes of Health. You can make the search as broad or specific as you'd like. The results include a note marked "Recruiting" or "Not Yet Recruiting" so you know if the trial is currently accepting participants.
Leukemia Organizations
There are numerous not-for-profit organizations that focus on raising funds for leukemia research, education, patient care, and treatment. As part of their programs to increase awareness, organization Web sites provide a wealth of information for leukemia patients and families. Learn about their programs and research work, and access thorough, reputable information on leukemia at their sites.
Dulcinea's Insight
- If you're interested in contributing financially to any of these organizations, you can learn how your donations will be used by consulting that organization's "Mission Statement." This usually includes a brief overview of the association's focus and distribution of funds, such as the research they've supported.
- If you're looking for financial assistance as a leukemia patient, contact these organizations directly through their "Contact" page. If the association is unable to help you, they will be able to guide you to the appropriate organization.
- These organizations are also a good place to start if you want housing support or counseling during leukemia treatment. Again, contacting the association directly will usually get you a response.
Dulcinea's Picks
The Leukemia & Lymphoma Society
provides free information to the public. You can also find information about financial support, treatment trials, and advocacy. If you're looking to volunteer your time for leukemia, this organization has plenty of opportunities for you.
The Children's Leukemia Research Association
, Inc. focuses on raising funds for leukemia research through donations. The association uses the money to fund medical research grants and to provide patient aid. The Web site lacks a professional look, but the organization has a solid reputation.
Leukemia Research Foundation
uses a variety of fundraising techniques that can be accessed online, including an eBay store and an Amazon.com "Wish List." Look for links under the "You can help" tab. The organization funds research aiming to discover causes and cures of leukemia.
José Carreras International Leukemia Foundation
is based in Spain, but the Web site can be accessed in a variety of languages, including English. The organization concentrates their efforts on clinical research, bone marrow transplants, clinical infrastructure, and assisting leukemia patients and families. The Web site is well designed and easy to navigate.
Lauri Strauss Leukemia Foundation
is designed to fund leukemia research, conduct bone marrow drives, and provide education to the public. Based in New York, the organization's Web site includes information about their grants, fellowships, and Board of Directors.
Kimberly Patterson Leukemia Research Fund
divvies its funds between leukemia research and assistance for parents, families, and loved ones who cannot afford housing during the time a family member is undergoing leukemia treatment. The organization hosts fun and entertaining fundraising events throughout the year, such as golf tournaments, which are listed on the Web site.
DKMS
is an organization that helps match bone marrow donors with recipients. They accept monetary donations through their Web site. The organization sponsors donor drives to encourage folks to donate bone marrow, and they maintain a registry in their attempt to link donors with patients.
News and Research on Leukemia
Medical researchers are always working to develop new medications, treatments, and screenings for leukemia. New research related to the disease is regularly published, and clinical trials of new treatments are frequently performed. Those dealing with leukemia may be interested in learning about the latest options and newest research, since breakthrough developments may lead to a better prognosis.
Dulcinea's Insight
- Medical research is either published in raw form in research journals, or summarized in lay terms for news stories and press release.
- The more you read about the disease, the more familiar you'll become with its terminology. If you need assistance with definitions when you first begin your research, try an Internet medical dictionary like this one from MedlinePlus.
- New research is published regularly. Some of these Web sites offer e-mail newsletters or XML news feeds so you automatically get updated about new leukemia research.
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National Cancer Institute
provides a list of the results of recent clinical trials. Click on a particular trial for a longer report on what it entailed, and what it means for the future of the disease.
Medical News Today
provides XML news feed about current leukemia research. You can get the news through a feed reader so you're regularly updated about the latest leukemia information. Most of the information comes from press releases, and it covers everything from clinical trials to gene research.
Leukemia Research Foundation
lists current "News" under the "Patient Information" section. The information is summarized with links to complete articles that describe the current research.
Leukemia Awareness Events
If you or someone you love has leukemia, you may wish to help in some way. Many organizations and associations sponsor fundraising events to raise money for leukemia research and patients, and to increase public awareness of the disease. Events can be in any form, including sporting tournaments, charity balls or dinners, or auction fundraisers. Participating in an event can help increase your knowledge about leukemia, as well as give you an opportunity to contribute to a worthwhile cause.
Dulcinea's Insight
- Many of the organizations that host events are also looking for volunteers. Look for a "How You Can Help" or "Volunteer" link if you want to contribute your time to the cause. You can also e-mail the organization directly.
- If you're curious about the attire or style of an event, look for "Past Events" or "Past Event Photos." Most of these Web sites include photographs or descriptions of events from previous years
- The Web sites we recommend below represent only a selection of events raising money for leukemia, and they may not take place in your area. You can always contact an organization to see if there's an event in your area, or enter, "Leukemia fundraising in (name of your town)" into a search engine.
Dulcinea's Picks
The Leukemia & Lymphoma Society
regularly hosts events related to the disease. Most of the events are athletic, such as walks, marathons, and hikes. If you prefer something more sedentary, click on "More Events" to find other activities such as a drive campaign and media events.
Leukemia Research Foundation
hosts fundraising events such as musical performances, softball tournaments, fashion shows, and charity auctions. The organization is always seeking volunteers. Note that most events occur in, or near Chicago. If you'd like to donate your time, click on "You Can Help."
The Joshua Kahan Fund
holds family-friendly fundraising events throughout the year, including a dinner dance and family bowling. The organization is based in New Jersey.
Kimberly Patterson Leukemia Research Fund
raises money through regular events, such as golf tournaments and raffles. The organization tries to hold their events in various states, such as New York and Florida.
Eagles Fly for Leukemia
supports leukemia research in the Delaware valley through fundraising. Events are usually held locally.
Support Groups for Leukemia Patients
Sometimes the best support comes from other people who have lived through the same experience. Making contact with people who have leukemia-or their family members-may be a comfort to many. Fortunately, the Web provides message forums and lists that allow those affected by leukemia to interact with each other.
Dulcinea's Insight
- The most active message forums tend to be those that are located on larger organizations' or medical Web sites. They're the best place to go for information and news. Smaller message boards may offer more personal support, as many participants are longstanding members who have become Internet friends.
- If you prefer direct, in-person contact for leukemia support, many of these Web sites also include resources that will help you find local leukemia support groups. Try looking for a subject or thread about "Local Groups" or your specific state.
Dulcinea's Picks
For discussion forums ...
The Leukemia & Lymphoma Society
has a very active discussion board on their Web site. The forum is designed to provide both support and information to those who are dealing with leukemia. The site is moderated and the overall tone is supportive.
HealthBoards
has a leukemia forum that is moderated and simple to navigate. It gets just a few new posts a day, though most posts have at least one reply.
For other support resources ...
Association of Cancer Online Resources
has a huge database of cancer mailing lists, including information about the number of subscribers. Not all of them are related to leukemia, but there are more than a few. Many of the lists are targeted to a specific audience, so browse through to find the one that best fits your needs.
The Cancer Blog
has a leukemia section that includes posts about news, events, and research related to the disease. Visitors are welcome to post comments, so interaction is encouraged.
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