Treatment decisions
Making treatment decisions can be overwhelming. However, understanding the benefits, risks and outcomes can help you make informed decisions regarding treatment.
Questions to ask your doctor
Ask questions so you understand your treatment options and can make decisions that are best for you. They may include:
- What are my treatment choices?
- What treatment do you recommend? Why?
- What is the goal of this treatment?
- How many patients have you treated who have the same disease?
- What are the chances that this treatment will get rid of the disease? For how long?
- What are the chances that I could get rid of the disease without this treatment?
- What are the possible risks and side effects of the treatment?
- What can be done to lower the side effects?
- Is it possible to continue work or school during treatment?
- What can you tell me about my quality of life after this treatment?
- How long will the treatment take?
- How will we know whether the treatment is working?
- What other choices do we have if the treatment does not work?
- Do you know of any clinical trials that might be appropriate for me?
Access specific questions related to allogeneic, autologous and haploidentical transplant.
Risks and benefits of a blood stem cell transplant
Although transplant can cure some diseases and treat others, it has risks.
Some risks are common like temporary hair loss and infections. Others are much less common, like your body rejecting the new cells and possibly death.
The risk for complications is highest during the first 100 days after a transplant. This is because your immune system is new and needs time to grow stronger. But there can still be risks during your recovery months and years after transplant.
Some risks are only with certain types of transplant. For example, graft-versus-host disease (GVHD) is only a risk after an allogeneic transplant (cells from someone else). GVHD happens when the cells from your donor (the graft) see your body’s cells (the host) as different and attack them. There are different levels of GHVD. It’s important to tell your doctor about any symptoms so they can determine whether your symptoms are related to GVHD.
Blood stem cell transplant outcomes
Survival and quality of life outcomes are 2 types of treatment outcomes (results). Both are important to keep in mind when choosing the best treatment for you. If your doctor doesn’t tell you about outcomes for your disease and transplant, you may want to ask about them.
Survival outcomes tell you how many people with a certain disease were alive at a specific time after diagnosis or after a specific treatment, like a transplant.
Quality of life outcomes tell you how well a group of patients were doing in different areas of their life after transplant. These areas could include physical, emotional and social health and other parts of everyday life, like work or spirituality.
Outcomes can tell you how patients with a similar disease and treatment have done as a group. Your doctor can also use outcomes to help you decide when to get a transplant. Outcomes can’t tell you how you will do. You may respond differently to your transplant than someone else. No two people are exactly the same. Your doctor can’t know for sure how your body and the disease will respond to treatment.
You can also learn more about outcomes data from our U.S. transplant center partners—and see the number of transplants each center has facilitated and the type of transplant performed. Remember, your doctor is the best person to explain what outcomes may mean for you.
Find clinical trials for blood cancers and blood disorders
A clinical trial is an option for some patients. Clinical trials are also known as research studies. There are many reasons for clinical trials, like learning how well a medicine works or studying the side effects or safety of a new treatment. Talk to your doctor to see if a clinical trial could be an option for you.
NMDP also offers a free program—the Jason Carter Clinical Trials Search and Support program (Opens in a new tab)—to help simplify the world of clinical trials for you and your loved ones. We offer a clinical trial search tool for blood cancers and blood disorders and one-on-one support in English or Spanish to help you navigate your options.
Tips for talking with family and friends
Family members or close friends may also help you make treatment decisions. Here are some tips for talking to them:
- Talk about what you think is important about your treatment. For example, if you want to be treated at a center close to home or by a specific doctor.
- Talk about how they can help you make treatment decisions and support you in your choices.
Tips and resources for parents
If you have a child who is ill, talk with your doctors or clinic social worker about ways you and other family members can get support as you’re making decisions. If your child is a teenager, ask for help involving them in treatment decisions.
Talk to other transplant recipients
You and your caregiver may find that it’s helpful to hear about other patients’ experiences. Tell your doctor if this would help you make treatment decisions. Our NMDPSM Peer Connect program can connect you with a trained volunteer who’s been there. No matter where you’re at in the process, recipients and caregivers like you are available to talk by phone or email, sharing their experience and tips.