When you learn you have a disease that may be treated with a bone marrow or cord transplant (also called a BMT), it is important that you become an active member of your health care team. You play a key role in your own treatment.
Learn about your disease and treatment options
Learning about your disease and how it can be treated can help you make more informed decisions. There are many ways you can gather information.
Get information from your doctor
- Ask for written information if it is available.
- Bring a family member or friend along to take notes and help you remember what your doctor says.
- If it helps, ask if you can record your visits on a tape recorder so you can listen to the information again later.
- Your cancer center may have a patient education team who can give you information about your disease.
Find information on the Internet and in books, pamphlets, videotapes or audiotapes
- Try to get information in the form that is easiest for you to learn from.
- Contact organizations that help patients with your disease — you can find contact information for many helpful organizations in the searchable directory of organizations on this website.
- Check your local library
- Search the Internet — resources on this website include:
- Information on many diseases that may be treated with transplant
- Information on treatment options
- MatchView® — an online resource you can use to see how many potential donors and cord blood units you may have on the Be The Match Registry®.
- Discuss any information you find with your doctor to see if it applies to you.
Be The Match®
Patient Services has a team dedicated to supporting patients, caregivers, family members and friends — before, during and after a bone marrow or cord blood transplant. Our patient services coordinators offer you free, confidential one-on-one support and financial guidance. We also offer free educational resources — DVDs, booklets, online tools and more. Our goal is to help you get what you need, when you need it. You can contact Patient Services
Talk to someone who has had a disease similar to yours
- It can help to hear how someone else made their treatment choices.
- Remember that each person's experience is different.
- Talk to your doctor about information you get from other people to see if it applies to you.
- Your doctor, clinic or hospital may be able to put you in touch with someone who has faced a similar diagnosis or with a support group.
- You may be able to find others to talk to through organizations that help patients with your disease, such as the Leukemia & Lymphoma Society (http://www.leukemia-lymphoma.org/all_page?item_id=4582) or one of the other organizations listed in the searchable directory on this website.
- If you are thinking about a bone marrow or cord blood transplant, you can get connected with a transplant survivor through the Blood & Marrow Transplant Information Network (BMT InfoNet) — http://www.bmtinfonet.org (see the Helpful Services section).
- Join a support group online. You may find an e-mail support group (or mailing list) focused on your diagnosis at the Association of Cancer Online Resources (ACOR) (http://www.acor.org/mailing.html).
Get a second opinion from another doctor
- Different doctors may offer different treatment options.
- Getting a second opinion does not mean you do not like or trust your doctor. Your doctor may encourage you to explore all your options.
- You have the right to change doctors if you feel more confident with another doctor.
- Some insurance plans require you to get a second opinion. If your plan does not require a second opinion, talk to your insurance company to make sure they will cover second opinions.
Ask for your doctor's help in understanding any statistics or survival rates you find
- Statistics cannot predict how any one patient will do. Each patient is an individual.
- Statistics may include patients whose situations are quite different from yours.
- Statistics may not include the results of newer treatments.
Decide on your treatment goals
You want to be sure the treatment your doctor plans is right for you. Some people want the strongest treatment possible. Their goal is to cure their disease, even if the treatment may make them very sick or has high risks. Other people want to enjoy the time they have, even if their treatment will not cure their disease. Once you understand your own goals, you can work with your doctor to choose the treatment that is right for you.
Talk to your doctor
When you speak up for yourself, your doctor can do a better job of treating you. Talk openly with your doctor so:
- Your doctor understands what you want from your treatment
- You understand the treatment your doctor recommends
- You get all the information you need from your doctor
For tips on how to talk to your doctor and questions you may want to ask, see Discussing Options with Your Doctor.
Play a role in your treatment
Once you and your doctor have chosen a treatment, you will need to do your part to give the treatment a chance to work. This means following instructions your doctor gives you, such as when to take your medications. Make sure you understand what you need to do. Some treatments depend on you following instructions closely. For example, some drugs need to be taken at exact times or they will not work.
- Take all medications exactly as prescribed and follow any other instructions from your doctor. If you want to make changes, talk to your doctor first.
- Go to your scheduled doctor's appointments. Your doctor needs to see how you are doing. Your doctor may need to adjust your treatment along the way.
- Tell your doctor about any side effects of your treatment.
- Tell your doctor about any new symptoms you have, even if they seem small. Some symptoms could be a sign of a problem your doctor needs to treat. Others are not a sign of a problem, and your doctor can reassure you.
- If you want to try alternative treatments, like herbs or supplements, talk to your doctor first. Some could cause problems when combined with your treatment.