If your diffuse large B-cell lymphoma (DLBCL) returns after remission (relapses), or does not respond to initial treatment (also called refractory), you have what is called relapsed or refractory DLBCL. It may be tempting to think that your past or present experience with lymphoma means you don't have anything new to learn or to do differently, but that's not the case. The treatment landscape for relapsed or refractory DLBCL has evolved greatly over the last few years, says Erika Haydu, MD, an oncologist at Massachusetts General Cancer Center in Boston and an assistant professor at Harvard Medical School, especially with the introduction of CAR T-cell therapy, which was first approved by the FDA in 2017, and other T cell engager therapies. For those with relapsed or refractory DLBCL, based on the clinical scenario, stem cell transplantation, targeted therapies, and chemotherapy are also a standard treatment.
It's important for you to understand how any new therapies to treat your lymphoma will work, as well as the medical team that will be assembled for your care.
Who Will Treat You?
Whether you receive CAR T or stem cell therapy, both require large, coordinated teams dedicated to your care, says Annie Im, MD, a hematologist/oncologist at UPMC Hillman Cancer Center in Pittsburgh. "That includes not just the physician but, of course, the nurse involved in the patient's care, and specific coordinators for transplant and CAR T, who are typically nurses who help coordinate the pretreatment workup, testing, education, and counseling as well as all the actual treatments in care and the post-treatment care." Also, there will likely be a social worker and other nonmedical staff on your medical team as well.
You and your caregivers are also considered part of this team, so you'll be asked to do your part by becoming informed about your disease and treatment and, of course, choosing your course of therapy. It's important to keep your regularly scheduled appointments too. "We do ask that they are able to come in for scheduled testing and appointments, again because this does require a lot of coordination," says Im.
What Questions Should I Ask?
Im wants her patients to ask questions and to be knowledgeable about what lies ahead. "I do think those patients feel more empowered about what's about to happen, have more expectations about what's going to happen, and then are less surprised or concerned if side effects and things like that do happen," she says.
Haydu says that some of the most important questions to ask your doctor are:
What treatment do you recommend for me?
- What do you think is most likely going to work?
- How is the treatment given?
- Is this something that's given as an outpatient in an infusion center, or does it require coming into the hospital for an admission?
- What are the potential side effects?
- How long is the treatment given for?
You also should ask your doctor if your treatment can be completed close to home or if it's something that needs to be done at a major medical center. Currently, there are about 140 centers in the U.S. and Canada that provide CAR T therapies approved by the FDA. Depending on where you live, you may have to travel for your treatment and stay for a period of time. The FDA requires that patients stay near their CAR T therapy center for at least two weeks.
These types of medical centers are typically the sites of clinical trials as well. Your doctor may recommend you for one of these research studies focused on new or more effective treatments for relapsed or refractory DLBCL. Far more than a last hope for patients whose cancer is not responding to treatment, clinical trials have been instrumental in discovering new drugs and therapies and fine-tuning already-approved treatments.
Accept Help, Even if You Don't Think You Need It
The first time Susan Dansby's diffuse large B-cell lymphoma was diagnosed in 2008, her doctor ordered a spinal tap. She hesitated when the scheduling nurse told her to bring someone with her, but "that was the best advice that I got along that journey," the 71-year-old Atlanta resident now says.
"Because I am so independent, it wouldn't have occurred to me to ask anybody to come with me when I could drive myself or be somewhere myself," she says. Having a friend or family member there is good insurance in case you need the help, she advises. "You may not feel you need it, but the first time you experience whatever, take somebody with you. Have them drive you. And then you'll have a point of reference to say, 'This one I can do by myself or that one I can't do by myself.' "
Tips for Friends, Family, and Caregivers
As a caregiver or friend, it's difficult to know what to do or how much you should do when a loved one has cancer that's come back or is not responding to therapy. But don't be afraid to ask how you can support them and then follow through. They will appreciate the effort.
What else you can do:
- Go to appointments with loved ones and offer to take notes. ("It makes a difficult journey a lot easier when you have people you can count on to drive you someplace or just be there in the waiting room in case you need something," says Dansby.)
- Check on them. Take the time to ask how your loved one or friend is doing and be present without trying to provide solutions or answers.
- Be alert. Be on the lookout for verbal and nonverbal clues that your friend or family member needs help or attention.
- Avoid false cheer. Cancer treatment can be physically and emotionally taxing. Don't try to rally someone if they feel discouraged or sad on a particular day. Just be there for them.
- Organize help. Coordinate an orderly plan for friends and family to help with chores, food deliveries, or caregiving shifts after your loved one returns home from a hospital stay or a difficult treatment regimen.
Dansby, who is single, had a relapse of her DLBCL in 2022 and received a stem cell transplant. She's grateful, she says, for her care team and for the family members and friends who came through for her and brought needed items while she was hospitalized. When the family member who stayed with her post-hospitalization went home, Dansby says she panicked a bit. "I was so paranoid about what if I forget this or that," she remembers. But her family member left a long list of helpful and important reminders. "That list saved me," Dansby says, "through the endless rounds of medication that went on for at least another six weeks."
Be Your Best Advocate
Remember, your experience with relapsed or refractory DLBCL is unique to you. "Because we do this all the time, we sometimes don't remember what things we might have missed or what things patients might not understand on their end," says Im. "So, I think it's important for patients to be able to stop and say, 'explain that again' or ask, 'what exactly is happening?' "
Ask your care team for any printed or online information they can provide about your lymphoma treatment. "I know my hospital and others sometimes have these patient mentors and patient support groups, which can be good ways to share information," says Haydu. Sometimes, hospitals providing CAR T, stem cell, or other therapies will hold classes or information sessions for patients to learn more. Haydu has lent her expertise to a virtual "ask the doctor" session held by the Lymphoma Research Foundation, two hours of information and a Q&A with a lymphoma specialist.
Both doctors caution against Googling to find more information about your lymphoma. "People should be careful about the information they find online because it doesn't always apply to them," says Haydu. "When someone is writing about their own experiences on message boards or on social media, you don't know the whole story, and what's happening to that one person is potentially not even relevant at all to you." She suggests scheduling a separate, follow-up appointment with your doctor or care team after you receive your new diagnosis just to talk about the details of your care.
Still, there are many vetted online resources that can help you find general and specific information about clinical trials, support groups, and other DLBCL resources. For example, the Lymphoma Research Foundation (lymphoma.org) has a list of English- and Spanish-language publications available to order or download on its website, including a "Lymphoma Care Plan" that can help you document your experience – the course of your cancer treatment, side effects, and other details.
Ultimately, you should ask about anything you want to understand. "I think that can be personal for patients. Some patients want to know details about statistics, and numbers and some patients don't want any of that," says Im. Don't hesitate to get a second opinion when you feel uncertain or simply want an additional doctor's perspective or advice. "At the end of the day," says Haydu, "we just want people to get better, to have a treatment work for them, not to have too many side effects, and try to get back to their life as much as possible."
Show Sources
Photo Credit: Prostock-studio/Shutterstock
SOURCES:
Susan Dansby, lymphoma patient, Atlanta.
Erika Haydu, MD, PhD, doctor, Lymphoma Program, Massachusetts General Cancer Center; assistant professor, Harvard Medical School.
Annie Im, MD, hematologist/oncologist, UPMC Hillman Cancer Center; associate professor of medicine, University of Pittsburgh School of Medicine.
BMT Infonet: "Directory of CAR T-cell Therapy Centers."
Frontiers in Immunology: "From bench to bedside: the history and progress of CAR T cell therapy."
Lymphoma Coalition: "Living with Diffuse Large B Cell Lymphoma (DLBCL)."
Lymphoma Research Foundation: "Education Programs," "Lymphoma Care Plan," "Understanding Diffuse Large B-Cell Lymphomas."
National Cancer Institute: "How Do Clinical Trials Work?"
University of Kansas Cancer Center: "Expanding Access to CAR T-Cell Therapy."
