Navigating Non-Hodgkin Lymphoma Treatment
- A Maryland dentist has become a patient after being diagnosed with non-Hodgkin lymphoma, a type of blood cancer. He managed to reach remission through CAR T‑cell therapy — a treatment that reprograms the immune cells to attack cancer.
- Some CAR T-cell patients may experience side effects like neurotoxicity, which can range from mild confusion to more serious symptoms, and cytokine release syndrome (CRS), which often causes flu-like effects.
- As he prepares for the next phase of treatment, he says his greatest strength comes from his son, who will serve as his stem cell donor and “give him the gift of life.”
- An autologous stem cell transplant allows doctors to deliver high-dose chemotherapy — often the BEAM regimen — to wipe out remaining cancer cells.
- After chemotherapy clears the bone marrow, frozen stem cells are reinfused to “rescue” the body and rebuild blood counts, giving patients a biological reset and a chance at long‑term recovery.
- “The next steps are just letting those stem cells get in there, get comfortable, and start growing,” Dr. Caitlin Costello, a hematologist/oncologist at UC San Diego Health, says. If all goes well, they’ll repopulate your bone marrow and give your body a fresh start.
Dubbed a “living drug,” CAR T-cell therapy reprograms a patient’s own immune cells to recognize and destroy cancer cells.
Read MoreAn autologous stem cell transplant is a procedure that gives a patient an infusion of their own healthy stem cells — the early blood cells in their bone marrow that grow into infection-fighting white blood cells, oxygen-carrying red blood cells, and blood-clotting platelets. But really, the point of a stem cell transplant isn’t about the stem cells at all.Dr. Baylin explains that before finishing his first round of treatment, he weighed roughly 143 pounds and even struggled to make it from his bed to the bathroom.
WATCH: How Does a Stem Cell Transplant Work?
Hodgkin lymphoma and non-Hodgkin lymphoma are both cancers of the lymphatic system, which includes lymph nodes, spleen, bone marrow, and other immune tissues. Their symptoms can overlap, including swollen lymph nodes, fatigue, fever, night sweats, and unexplained weight loss. However, the way they are treated may vary.
Treatment for non-Hodgkin lymphoma often includes chemotherapy, radiation, immunotherapy, and targeted therapy.
“I did CAR T therapy in the middle of November,” Baylin said.
CAR T-cell therapy involves doctors reengineering a patient’s immune system by drawing blood and separating the T-cells. Then, using a harmless virus, the T-cells are genetically engineered to produce proteins called chimeric antigen receptors (CARs) on their surface. These receptors enable the cells to recognize and attach to a matching protein, called an antigen, on the tumor cell, just as a key fits into a lock. The process primes the T-cell to recognize the cancer and to fight it.
CAR T-cell therapy differs significantly from traditional chemotherapy because it generally doesn’t cause hair loss or nausea. But like any powerful treatment, it comes with its own set of side effects.
WATCH: CAR T-Cell Therapy: How it Works, and Who Can Get It
Some CAR T-cell patients may experience side effects like neurotoxicity, which can range from mild confusion to more serious symptoms, and cytokine release syndrome (CRS), which often causes flu-like effects.
CAR T-cell therapy helped Dr. Baylin reach remission. However, the next phase in his treatment journey involves a stem cell transplant.
Understanding a Stem Cell Transplant Procedure
“The purpose of an autologous transplant is to give your body high‑dose chemotherapy,” explains Dr. Caitlin Costello, a hematologist/oncologist at UC San Diego Health.
The treatment is so intense that without returning stem cells afterward, “your body would never grow bone marrow again.”
In an autologous transplant, the stem cells come from you. Your care team collects them about a week before chemotherapy begins.
WATCH: The Stem Cell Transplant, a Day-by-Day Guide
“Once we have adequate stem cells, we can throw them in the freezer and save them for when we’re ready,” Dr. Costello says. These cells are stored in a medical‑grade freezer with a preservative to keep them safe and fully functional.
Then comes what Dr. Costello calls “the true magic” of the process: a powerful chemotherapy regimen designed to wipe out cancer cells wherever they’re hiding. Many patients receive a four‑drug combination known as BEAM — carmustine, etoposide, cytarabine, and melphalan. This high‑dose therapy acts like “hitting the reset button,” she says, clearing lymphoma cells from the blood and bone marrow.
WATCH: Coping With Stem Cell Transplant Side Effects
The chemotherapy is typically given over five days, either in the hospital or through daily visits. Day six is a planned “day of rest,” when patients usually still feel well because side effects haven’t yet set in. A few days later, symptoms such as nausea, vomiting, diarrhea, or mouth sores may appear, and doctors can offer supportive treatments to ease them.
“Once a patient has received this therapy, their bone marrow will have a dramatic decrease of myeloma cells and healthy cells,” adds Dr. Jing Ye of the University of Michigan Health.
WATCH: What is an Autologous Stem Cell Transplant?
The goal of reinfusing stem cells is to help the body rebuild its blood counts after the chemotherapy has done its job.
Day seven is transplant day. The frozen stem cells arrive packed in dry ice — “it literally looks like frozen bags of blood,” Dr. Costello says. The cells are thawed and infused just like a blood transfusion. After chemotherapy has wiped out your natural stem cells, this infusion “rescues” you, allowing your bone marrow to recover.
From there, your role is mostly to wait.
“The next steps are just letting those stem cells get in there, get comfortable, and start growing,” Dr. Costello says. If all goes well, they’ll repopulate your bone marrow and give your body a fresh start.
Expert Resources on CAR T-Cell Therapy for Patients
- CAR T-Cell Therapy Side Effects Can Be Serious, But Many Are Short-Lived
- CAR T-Cell Therapy Explained: What Diffuse Large B-Cell Lymphoma Patients Should Know
- CAR T-Cell Therapy for Diffuse Large B Cell Lymphoma: Do I Qualify?
- CAR T-Cell Therapy for Non-Hodgkin Lymphoma
- CAR T-Cell Therapy, Bispecific Antibodies — Choosing Between Innovative Treatment Options
- CAR T-Cell Therapy: Hope, Hurdles, and What to Expect
Understanding CAR-T Cell Therapy
CAR T-cell therapy transforms a patient’s own immune cells into powerful cancer fighters. The journey begins with T-cells—white blood cells that help the immune system detect and destroy threats like viruses and cancer. Once collected from the patient’s blood, these cells are sent to a lab, where scientists use an inactivated virus to insert new genetic instructions.
These new genes teach the T-cells to produce special surface proteins known as receptors, allowing them to better recognize cancer cells. The modified cells are then multiplied in large numbers and infused back into the patient.
WATCH: The Value of CAR T-Cell Therapy for Patients.
Once inside the body, these re-engineered T-cells go to work, locking onto matching proteins—called antigens—on cancer cells and attacking them directly.
Dr. Siddhartha Ganguly, Carol Cockrell Curran Distinguished Centennial Chief in Hematologic Oncology at Houston Methodist Hospital and Neal Cancer Center, compares this cutting-edge therapy to a classic video game.
“CAR-T therapy aims to give ‘eyes’ to the T-cells. We remove the T-cells from the body by a blood draw, send them to the lab, and insert an anti-cancer gene before infusing them back into the patient. This gene allows the T-cell to ‘see’ the cancer cells… They will seek out the cancer and kill it, much like the video game Pacman,” Dr. Ganguly told SurvivorNet.
He notes that while CAR T-cell therapy, like many treatments, comes with possible side effects, it offers substantial hope for patients facing hard-to-treat blood cancers like advanced lymphoma and multiple myeloma.
A Deeper Look Into the Reengineering Process
Doctors reengineer a patient’s immune system with CAR T-cell therapy by first drawing blood and separating out the T-cells.
Then, using a harmless virus, the T-cells are genetically engineered to produce proteins called chimeric antigen receptors (CARs) on their surface. These receptors enable the cells to recognize and attach to a matching protein, called an antigen, on the tumor cell, just as a key fits into a lock. The process primes the T-cell to recognize the cancer and to fight it.
Next, the modified cells are multiplied into the millions in a laboratory.
The CAR T-cells are specific to your cancer. For example, some types of lymphoma cells have the antigen CD19 on their surface. CAR T-cell therapies for those cancer types only target the CD19 antigen.
A few days before the infusion, you’ll get chemotherapy to clear out some of your immune cells and prime your body to receive the CAR T-cells. This will help the CAR T-cells work better.
Finally, the modified T-cells will be infused back into your body to hunt down the cancer.
Several FDA-approved CAR T-cell therapies are currently in use, including:
- Abecma (idecabtagene vicleucel)
- Breyanzi (lisocabtagene maraleucel)
- Carvykti (ciltacabtagene autoleucel)
- Kymriah (tisagenlecleucel)
- Tecartus (brexucabtagene autoleucel)
- Yescarta (axicabtagene ciloleucel)
These therapies are used to treat various blood cancers, such as certain leukemias, lymphomas, and, more recently, multiple myeloma.
What’s the Effectiveness of CAR T-cell Therapy?
CAR T-cell therapy has delivered promising outcomes for patients with certain blood cancers, showing response rates as high as 80% in cases where other treatments have failed. For individuals with lymphoma, more than 54% of those treated with the FDA-approved therapy axicabtagene ciloleucel (Yescarta) and 40% of those who received tisagenlecleucel (Kymriah) achieved a complete response, meaning no detectable cancer remained.
Remarkably, among those treated with Yescarta, 40% remained in remission an average of 15 months following their infusion.
Typically, patients who receive CAR T-cell therapy have already had at least two previous treatments, often including rituximab (Rituxan) with chemotherapy and high-dose chemotherapy.
“Some of these patients had three, four, or five prior lines of therapy, and we were able to save their lives,” said Dr. Stephen Schuster, director of the Abramson Cancer Center’s lymphoma program, in an interview with SurvivorNet.
Medical research has shown response rates of between 80 and 100 percent. “It’s really unprecedented. This is something we had never seen before for patients who have had six or seven prior lines of therapy,” says Dr. Nina Shah, a hematologist with the University of California, San Francisco Medical Center.
CAR T-Cell Therapy Side Effects
CAR T-cell therapy is a form of cancer treatment that differs from traditional chemotherapy in a significant way: it generally doesn’t cause hair loss or nausea. But like any powerful treatment, it comes with its own set of side effects.
As CAR T-cells multiply in the body, they release inflammatory proteins called cytokines. This can trigger a condition known as cytokine release syndrome (CRS), which may cause symptoms like high fever, weakness, chills, and low blood pressure. Another potential side effect involves neurological changes, which can lead to confusion or a decreased sense of awareness.
WATCH: CAR T-Cell Therapy Side Effects
When side effects do appear, the most common and least severe is fatigue.
“That’s very normal, and it usually resolves in the first month,” says hematologist Dr. Nina Shah.
However, CRS can sometimes be more serious. It occurs when the therapy causes a surge of cytokines—tiny immune-signaling proteins—to flood the bloodstream. This response can bring on a range of symptoms, from mild flu-like effects to more severe reactions.
Typical CRS symptoms include headache, fever, chills, scratchy throat, nausea, vomiting, diarrhea, joint or muscle pain, and extreme fatigue. In more serious cases, it can cause shortness of breath, low blood pressure, or a rapid heart rate. While most patients experience only mild to moderate reactions, it’s important to note that CRS can, in rare instances, become life-threatening.
Currently, scientists aren’t sure whether the side effects correlate with how well the treatment is working, so it’s difficult to tell patients whether their side effects or lack of them are a good or bad thing. “All I can say is that every patient is different, and every patient has a different course,” says Dr. Shah.
Data shows that the quality of life for people who have undergone CAR T-cell therapy “actually improves when we talk about pain, fatigue, and emotional and social functioning. And so, whether or not you experience side effects, we hope that this therapy will improve your quality of life,” says Dr. Shah.
If you’re considering CAR T-cell therapy, talk with your doctor about all potential side effects—the mild, the serious, and everything in between.
Treatment doesn’t end once you’ve received the CAR T-cell infusion. “They typically have to be monitored very carefully after that for a number of weeks or even months, due to some of the potential side effects,” Dr. Julie Vose, chief of hematology/oncology at the University of Nebraska Medical Center, tells SurvivorNet.
Questions to Ask Your Doctor
- Am I a candidate for CAR T-cell therapy?
- What are the potential risks and side effects?
- What are the chances of success for my specific cancer type?
- What does the treatment process involve?
- Where will I receive treatment, and how often?
- Are there alternative treatments I should consider?
- What is the cost, and will my insurance cover it?
- What experience does this center have with CAR T-cell therapy?
- What kind of follow-up care will I need?
- Can I speak with other patients who’ve undergone this therapy?
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