By Blood Cancer United
Relapse.
The word no one wants to hear. But it never fully leaves your mind, either.
If you’re reading this, it’s likely you’ve learned that you’ve relapsed, or a loved one has.
Whether you’re a patient, a caregiver, or a loved one, that diagnosis can set off a flood of tough emotions. Shock. Dread. Fear. Anger. Defeat. Even hopelessness. Every one of these feelings is valid.
Relapse is hard. Full stop. And—there are ways to cope with it physically and emotionally. Things you can do to push forward.
Believe it or not, you have some advantages this time around:
- You’ve been here before and know more of what to expect
- You already have a trusted healthcare team, your family, and friends—a network of support
- And with trusted, up-to-date information; free resources; and a supportive, embracing community, you have us, Blood Cancer United, to lean on
Moving ahead means gathering information, getting perspective, and regaining some control over your life.
What is relapse?
Your doctor may have mentioned the words refractory and/or relapse.
Refractory means your cancer isn’t responding to treatment—it’s resistant.
Relapse means the cancer has returned, or "recurred.” It may be in the same place(s) in your body, or somewhere different.
If you’re wondering, “Could I have done something to prevent relapse?”—the answer is no.
You followed the treatment plan. You kept a positive mindset. You thought it was done. But cancer doesn’t follow rules. Sometimes cells remain undetected, become resistant, or stay dormant for years before returning.
Relapse is not anyone's fault.
Who is likely to relapse?
Relapse is a possibility every blood cancer survivor faces—no matter their type of cancer, age, or lifestyle. Relapse isn’t predictable, and it’s not inevitable.
What’s important is to catch relapse early. Be honest with yourself and your doctor about any new symptoms. Reach out if you’re worried; be your own advocate. You know your body best.
Nicholas, Aryanna, and Jaime didn’t expect relapse to be part of their experiences, but it happened anyway.
Nicholas, a physician diagnosed with acute myeloid leukemia (AML), relapsed 78 days after a stem cell transplant. He was shocked: “Things were going well. Then [suddenly], they weren’t.”
Aryanna relapsed from acute lymphoblastic leukemia (ALL) nearly ten years after remission—when she was newly married and pregnant with her fourth child. Even though she noticed some strange symptoms, she thought, “Why would cancer even be on my radar after all that time?”
Jaime, a mother and grandmother, has relapsed twice after her initial diagnosis of Waldenström’s macroglobulinemia (WM) and, later, diffuse large B-cell lymphoma (DLBCL). She knew her cancer was back before tests confirmed it, but had major life events to celebrate before going back into treatment: “I wanted to be present for those moments and not let cancer steal that time.”
Hearing from real people who've been in your shoes can help. As you learn more about relapse below, you’ll get relevant perspectives from these three survivors.
Explore more stories from patients, survivors, and caregivers. Or, share your own with us.
Which treatment makes sense for you?
Relapse brings new decisions—and new possibilities for treatment.
Your healthcare team will carefully consider treatment options, including:
- Standard therapies such as chemotherapy, radiation, immunotherapy, or a stem cell transplant
- Clinical trials, which offer access to new treatments that may be more effective and have fewer side effects than standard treatment
- Finding a trial that’s right for you can be complex and requires expertise. With help from our Clinical Trial Nurse Navigators, you can explore trial options and get personal assistance throughout the whole process.
- Palliative, or supportive care, which focuses on symptom relief, quality of life, and emotional well-being for anyone with a serious illness. Palliative care can be helpful at any age or disease stage, regardless of prognosis.
- Watch and wait, a careful monitoring approach often used for slow-growing blood cancers
Ultimately, it’s up to you to decide with your oncologist what is best for you. But keep in mind, scientists are constantly researching and developing new treatments. Try to stay hopeful.
Aryanna has benefited from that progress:
“The first time I had cancer, CAR T wasn’t an option. I am alive this time because of it. I get a second chance at being a mother to my four beautiful children, a wife to my incredible husband, a daughter, a sister, and a friend.” —Aryanna
Learn more about making treatment decisions.
How can you support your body?
Starting treatment again is physically exhausting—but this time around, you know your body and your limits better. Pay attention to what your body tells you as you go through treatment:
- Report any side effects early
- Rest when you need to
- Move gently, as approved by your doctor
Think about how you can work with your body, as a partner. Jaime’s chosen way to cope? “Walking every day. Sometimes it was just to the corner and back.”
Good nutrition is also important to help manage treatment side effects and to build strength. Schedule a free, one-on-one consultation with our registered dietitians, who have expertise in both adult and pediatric nutrition for cancer patients.
And try our free Health Manager App to track your side effects, medication, food, and hydration, along with other helpful features.
Explore the possibility of exercise in this podcast.
How can you take care of yourself emotionally?
Relapse can bring a lot of uncertainty and make you feel like you’ve lost control. Learning how to live with cancer, mentally and emotionally, can be one of the hardest parts.
Taking care of your emotional health is just as important as your physical health.
Here are three places to start when you’re feeling emotionally scattered:
- Be kind to yourself.
Finding emotional support is particularly important. Help can include:
- Talking to your loved ones about where you are in your experience and leaning on them, as they know you best
- Therapy or counseling to work through your feelings with someone who’s trained to help
- Journaling (our Write It Out Journal can help you get started)
- Breathing exercises, prayer, or meditation to help you stay grounded
- Trust your oncologist and healthcare team.
Your oncology team are your partners, through treatment and beyond. Make sure you ask questions, explore options, and get a second or third opinion if you have doubts and/or feel you need it.
We offer free Navigating Blood Cancer Care guides for young adults and adults, as well as one for working with your child’s care team.
- Let others help.
- Accept love and support from family and friends, even if you’d gotten used to being independent
- Spend time with people who’ve been in your shoes through Blood Cancer United support groups
- Make more personal connections through the Patti Robinson Kaufmann First Connection® Program, which will match you with a trained peer volunteer who’s had similar experiences
- Check out our wide variety of Survivorship Resources
“I am taking the time to process what has happened to me. I am constantly connecting with other patients who have been through similar experiences.” —Aryanna
Check out this blog for more mental health tips.
Where can you find more support?
If relapse has brought you here, know this: You are supported. You are seen. And Blood Cancer United is with you—every step of the way.
“I turned to LLS [now Blood Cancer United] back in 2009 when I was first diagnosed, and I’ve stayed connected ever since. I’ve participated in a DLBCL support group and joined SPAACES (which I absolutely love). That community has been a constant anchor through it all.” —Jaime
If you ever feel the need to talk, ask questions, or get support, our Information Specialists, who are all highly trained oncology social workers and nurses, are just a message or a call away.
And if you have questions about possible clinical trials, our Clinical Trial Nurse Navigators, who are registered nurses with experience in both pediatric and adult blood cancers, can help.
Everything we offer is free. For anyone affected by blood cancer.
And remember: resilience makes a huge difference.
Dealing with your relapse takes strength, resolve, and resilience. Emphasis on resilience.
Being resilient doesn’t mean being fearless. It doesn’t mean being stoic and never feeling tough feelings. What it does mean is continuing, even when things are hard. Recognizing that your world isn’t black and white; it’s filled with grays. Building resilience will help you live better with those nuances and uncertainties.
It’s important to remember that blood cancer research is making progress every day. Better, safer treatments are in the pipeline—offering better quality of life and more years to more people like you or a loved one.
You can live with a relapse. Many people have before you, and many are doing so right now alongside you. You're not in this alone; you never were.
“Life may continue to get harder and tougher, but you... make a choice. You owe it to yourself. You cannot quit.” —Nicholas
