Hearing you have leukemia can be overwhelming. It’s a scary diagnosis to be sure, but it is survivable and many people live long lives after a leukemia diagnosis.
There are several different kinds of leukemia, named according to the kind of cell affected and how fast it grows. Some are more common in children and others in adults, but that doesn’t mean a particular cancer can’t develop in a different age group. Just that it’s less likely.
Although there are similarities in symptoms and treatments for the different types of leukemia, there can also be important differences. Before you begin your research, make sure you know which kind you have. It will make finding the right information much easier.
There are more resources than what we’ve listed here, of course. But the goal of this page is to get you started without overwhelming you. So we try to limit things to what we believe are the best resources in each category.
Once you understand your diagnosis better, you’ll feel more confident in finding more information on your own. Many of the resources we list also include resource lists on their websites. So that’s a great place to start learning even more.
Leukemia Overviews
Overviews can help you get a handle on all the different areas of your disease without feeling overwhelmed. Then you’ll have a better idea of questions to ask and what information you want to explore in more depth.
Leukemia overview from MedlinePlus : This overview is short and to the point, making it a good place to start. It has some pictures of different kinds of leukemia and tests. Plus links to more information about the most common kinds.
Leukemia info from Mayo Clinic: This overview provides an easy-to-understand guide to understanding your disease, talking to your doctor and coping with your diagnosis.
What You Need To Know About™ Leukemia: This online booklet is from the National Cancer Institute. It describes how leukemia cells are different from normal blood cells and discusses different treatment options. You can download it as a PDF and in E-reader formats.
Organizations Devoted to Leukemia
There are several organizations devoted to helping leukemia patients, increasing awareness and promoting research. These are the best ones we could find.
Leukemia & Lymphoma Society: This organization works toward fighting all blood cancers. Its website also has a good overview of the disease, including links to more information about the different subtypes. You’ll also find patient education programs, including recordings of past programs and videos.
Leukemia Research Foundation: This foundation funds new researchers (researchers just starting out) in independent labs (not for pharmaceutical companies) working on new approaches to leukemia. It raises money and awareness through the annual ABC 7 Jim Gibbons 5K in Chicago each summer. Leukemia patients in Illinois may qualify for financial assistance.
Childhood Leukemia Foundation: This foundation is dedicated to raising awareness of and supporting children living with leukemia. It offers services to help children and their families cope with the challenges childhood cancer brings.
National Children’s Leukemia Foundation: This organization supports research into all blood cancers. It also offers a variety of services to families, including patient advocacy. This program helps families having issues like denial of payments or other problems with their insurance or hospital billing departments.
Leukemia Research and Clinical Trials
Researchers are doing a lot of work on leukemia, trying to better understand the different types and what causes them, as well as how best to treat them. The NCI has a list of recent trial results, if you’re interested in exploring whether any new treatments may be right for you (please note that treatments from these trials may not yet be approved for general use).
Or maybe you’d like to be part of a current clinical trial. These trials aren’t right for everyone, but if you qualify you may get access to treatments showing great promise (but there are no guarantees). If you’re interested, check out Understanding Clinical Trials for Blood Cancers from The Leukemia & Lymphoma Society. It can help you decide if a trial may be right for you and know what to expect if you do participate.
Your doctor can help you find an appropriate trial. You can also search one of these databases and ask your doctor about trials you are interested in.
TrialCheck: Choose Leukemia from the drop-down list and you’ll get results divided into categories, including treatment, supportive care, prevention and other. You can also refine the results (click on the “+” next to Refine Search Results) by disease state, location, drug and other filters.
ClinicalTrials.gov leukemia trials: We link to results for a search on “leukemia,” which returns more than 1,000 studies. Many are specific to one or two of the leukemia subtypes, so you may want to search for your specific diagnosis instead (search box is in the upper right of the page). You can also modify the search with various filters to shorten the list.
CenterWatch leukemia trials: CenterWatch offers a state-by-state list of industry trials currently looking for patients to volunteer. There are also a few pediatric leukemia trials listed separately.
National Cancer Institute Database: This search form lets you narrow your search right from the start, if you know exactly what you want. If not, you can just pick your diagnosis from the drop-down lists (if possible, try to choose the right stage/subtype, too) and skip everything else.
Forums and Support Groups about Leukemia
Feeling alone? It’s understandable. As much as friends and family want to help, it’s hard for them to really understand if they haven’t gone through it themselves.
But you can find people who understand. There are thousands of people going through the same things you are. And many of them are part of online communities and/or local support groups.
Leukemia & Lymphoma Society local chapters: See if there is a local chapter of LLS near you. Each chapter offers its own educational programs, support groups and other events.
Leukemia & Lymphoma Society Forums: This is the online discussion boards from LLS. There are boards specific to discussions about the Society, your diagnosis, the Light The Night Walk and more. Several boards are split into sub-spaces, and the navigation can take some getting used to. This seems to be a very active community, although, like most boards, some areas are more active than others.
LLS is the big organization and supporter of leukemia in general. But there are also support groups specific to the various sub-types of leukemia. To find those, do a search for your type of cancer plus the word “support” or “support group” (without the quotes). Some are likely to be less active than others, so you may need to check out a few before you find a good match.
If you’re looking for local, in-person groups, add your city and state to the search. Many medical centers run support groups, either for specific diseases or groups of similar diseases.
Other Resources for Leukemia
We didn’t find any other resources specific to leukemia. But there are lots of other resources (financial, support and more) available to cancer patients in general. You can find them on our Cancer Patients Resources page.
Information for Kids About Leukemia
Whether you need to talk with your kids about your own diagnosis or theirs, the conversation can be hard.
We have a page of resources for both kids and parents. You’ll find articles with advice on age-appropriate information to present to your kids.
The section specifically for kids links to websites and support groups just for kids. It lets them explore cancer information with games, activities and articles that are kid-friendly. The support groups and camps let them connect with other kids going through the same things, whether it’s a parent’s cancer or their own. Of course, you’ll want to check them out first to see which ones are appropriate for your child(ren).
The Make a Dream Come True program from the National Children’s Leukemia Foundation helps kids cope with their own leukemia by helping them fulfill a dream, either individually or in a group outing.
Caregiver Resources
If you’re caring for someone with Leukemia, you need support and understanding, too. Taking care of yourself is important, both for yourself and your loved one (you’ll be no good to him or her if you get sick too!).
Connecting with others in similar situations can help you vent, feel less alone and discover new ways to cope.
Leukemia & Lymphoma Society: This organization isn’t just committed to helping patients. It also understands the strain of being a caregiver. The website offers information on taking care of yourself while caring for your loved one. And you can call in for weekly live chats with other caregivers.
You can find other support sources on our caregiver resources page. These resources are not specific to leukemia, but are available to people caring for cancer patients with many different diagnoses.