Have you or a loved one been diagnosed with Non-Hodgkin Lymphoma (NHL)? It can be a scary diagnosis. And sometimes a confusing one, too.
Because Non-Hodgkin Lymphoma is not really one disease. Instead, it is all the lymphomas that are not Hodgkin’s Disease. The Australian Cancer Research Foundation has an easy-to-understand explanation of the differences between Non-Hodgkin and Hodgkin’s lymphomas, if you’re confused.
So when you’re researching your diagnosis, general information about NHL is a great place to start. But you’ll want to look for information about your specific kind, too. Sometimes that will be easier than others. There are more than 4 dozen different kinds of NHL, but only a few are very common. Of course, you’ll find more information about the common ones than the others.
A lot of the information about the various types of NHL will be similar, especially things like symptoms and tests. But there are also important differences. Some grow slowly and may not need treatment right away. Others grow quickly and it’s important to stop them as fast as possible. And the treatments can be very different, too.
This page offers resources for general information about Non-Hodgkin Lymphoma. Some of the resources do have information about some of the subtypes (or link to other sites with more information).
We’ve groups the resources into categories to make it easier on you to find what you need.
When you’re ready to dig deeper with your own research, we offer some tips for recognizing authoritative sources.
Non-Hodgkin Lymphoma Overviews
Overviews give you a chance to digest the basic information about your diagnosis, from symptoms to treatment and beyond. Once you understand the basics, you can decide which areas you want/need to learn more about.
Non-Hodgkin lymphoma from MedlinePlus: This is one of our favorite sites to start with when we really know very little about a disease. The overview is very basic, but it includes pictures and links to more information. And it gives you a good foundation for understanding more in-depth overviews.
Non-Hodgkin Lymphoma Overview: This overview guide from the American Cancer Society is more detailed than the MedlinePlus one, but still very simple to understand. The site also has a detailed guide with more information. You can also download both guides as PDFs.
Non-Hodgkin’s Lymphoma from LymphomaInfo.net: This site has been online for more than 10 years, providing information about all kinds of lymphomas. Its information is easy to understand, and there are lots of links to more information.
Non-Hodgkin’s lymphoma on Mayo Clinic: This overview covers everything from symptoms to examples of questions to ask your doctor.
Organizations Devoted to Non-Hodgkin Lymphoma
Several organizations exist to help patients and their loved ones with information, support services and more. Organizations also help fund research and raise awareness.
These are the big ones when it comes to lymphoma:
Lymphoma Research Foundation: This organization funds research into all subtypes of lymphoma. It also offers a helpline, financial assistance, clinical trials information and more for patients.
Leukemia & Lymphoma Society: This is one of the oldest and biggest organizations devoted to blood cancers. It was started in 1949 by parents who had lost a son to leukemia. Today it works toward curing all blood cancers by funding research, promoting education and awareness, and helping patients access needed services.
Research and Clinical Trials on Non-Hodgkin Lymphoma
Many researchers are working hard on understanding NHL in both adults and children. If you’re interested, the American Cancer Society has a short review of some of the current research into NHL.
Some of this work requires patients to take part in clinical trials. This option may not be right for you, but if it is, these sources can help you find trials you may qualify for.
Remember to also talk with your doctor to help you make a final decision about any trials you find.
ClinicalTrials.gov non-hodgkin lymphoma trials: This site is a searchable database of government and industry trials, as reported by the researchers running them. We’ve linked to the results for a search on “non-hodgkin lymphoma.” You can refine this search to include only trials near you, only studies in certain phases and more. If you know which type of NHL you have (ask your doctor), you can also try searching for that, which may turn up a shorter list that’s easier to look through.
National Cancer Institute Clinical Trial Search: On this site, you’ll choose your diagnosis from a drop-down list that lists many of the different kinds of lymphoma separately. It even lets you choose between adult and childhood forms for some types. Then you can also choose a stage/subtype to help you narrow your results even more right from the start. You can skip any questions you are not sure about.
Clinical Trials at MD Anderson Cancer Center: MD Anderson lists studies it is part of on its website. This is a much shorter list than the larger databases, and if you live nearby or can travel, it’s worth checking to see if you might qualify for any. Choose Lymphoma from the drop-down list.
Non-Hodgkin’s Lymphoma Clinical Trials from CenterWatch: This is a state-by-state list of industry trials that are looking for patients to enroll now. Since you can quickly go to your state, this may be an easier place to start.
The various databases/lists will most likely have a lot of the same trials, but other trials may only be listed in one place. So it’s worth looking at several sources if you’re really interested in being in a trial. Your doctor can also help you find a trial you qualify for (and you’ll most likely need his/her help enrolling).
Forums and Support Groups about Non-Hodgkin Lymphoma
You’re not alone on this journey. In addition to friends and family, you can connect with other NHL patients who understand just what you’re going through. You can share fears, successes, coping strategies and more.
Leukemia & Lymphoma Society Community: The Society’s discussion boards are divided into categories that include sections for their fundraising efforts, the Society itself and, of course, living with blood cancers. Several boards are further divided into more specific categories. The navigation can be a little confusing for a first-time visitor, but if you keep viewing subsections within the Blood Cancer Discussion Boards, you will eventually find sections for many of the specific kinds of blood cancers.
Non-Hodgkin’s Lymphoma Cyberfamily support group: This group has been around for more than 15 years (most of them on Yahoo! Groups). It’s a public group that discusses pretty much anything related to living with lymphoma.
Lymphoma.com Support Forums: Lymphoma.com has had support groups online since 1996, and they appear to still be going strong. Four of the six support forums had activity within the last 24 hours when we visited.
Other Resources for Non-Hodgkin Lymphoma
A few resources that don’t quite fit into other sections.
Non-Hodgkin’s Lymphoma Cyberfamily: In addition to the support group, the Cyberfamily’s website has a lot of information and news about NHL, as well as these downloadable documents that can help you on your journey. There’s a list of questions to ask your doctor, a chemotherapy checklist, diet information for people with compromised immune systems and more. It also offers links to lymphoma-related abstracts from the American Society of Hematology’s annual conventions.
Lymphomation.org: This site has so much information, it belongs in pretty much every category. It’s been around for more than 10 years and is definitely worth the time it takes to explore it. But we suggest you explore it once you have a basic understanding of your diagnosis. Because although it seems to be organized very well, it’s also easy to get lost in the goldmine of information if you’re not sure what you’re looking for.
We have other cancer-related resources listed here. These resources are not specific to NHL, but are for people with a variety of cancer diagnoses.
Information for Kids About Non-Hodgkin Lymphoma
Talking with your kids about cancer may be one of the hardest things you have to do. We didn’t find too much information for kids specifically about NHL. But we do have a Kid’s Cancer Resources page with information for both parents and kids.
For parents, there’s advicce on how to give your kids information appropriate for their age. And how to help them face your diagnosis (or their own) with less anxiety.
For kids there are a variety of websites, activities and support groups. The support groups let kids connect with other kids going through the same thing, which can help them feel less alone.
One good article we did find, aimed at teens, is Non-Hodgkin Lymphoma on TeensHealth (part of the kidshealth.org site from Nemours). It explains this cancer in a way teens can understand. There’s also a whole Cancer Center for Teens section with more cancer-related information.
Caregiver Resources
Are you caring for someone with Non-Hodgkin Lymphoma? You need support, too. And you shouldn’t feel guilty about it. Think of it this way: Taking care of yourself will help you take better care of your loved one. After all, you can’t do much if you’re sick too.
You can, of course, use the resources here to learn more about the disease. And many of the support communities welcome caregivers. Some even have sections especially for caregivers. Check out:
- Lymphoma.com Forums
- Leukemia & Symphoma Society (LLS) Community’s Caregiver Lounge: Although the LLS community is pretty active, the activity in this area seems inconsistent. But it’s still worth checking out
- LLS Caregiver chats: These are live, online chats held weekly. They are moderated to keep things on-topic and friendly.
We also have a Cancer Caregiver Resources page with links to more information about being a caregiver and finding support. These resources are not specific to NHL, but most are specific to caring for someone with cancer.