Recognizing the Signs of Leukemia and Advocating for Yourself
- At 26, Megan Jones experienced severe symptoms that were repeatedly dismissed by doctors, but her determination led to a blood test confirming B-cell acute lymphoblastic leukemia, an aggressive blood cancer.
- She underwent steroids, chemotherapy, and later CAR T-cell therapy, facing both physical changes and emotional challenges that highlighted cancer as a mental battle as much as a physical one.
- CAR T-cell therapy reprograms a patient’s own immune cells to recognize and destroy cancer cells.
- Doctors reengineer 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.
- Multiple FDA-approved CAR T-cell therapies are now available for blood cancers, including lymphomas, various forms of leukemia, and most recently, multiple myeloma.
- Jones says her treatment changed the way her body looks with weight gain and swelling. A major health challenge that causes noticeable changes to your appearance can impact how you feel, physically and emotionally. Psychiatrist Dr. Marianna Strongin encourages cancer warriors to look at and appreciate the parts of their bodies that were affected by treatment to take back ownership.
What began as strange, painful symptoms—red spots on her legs and excruciating pain in her thighs—was repeatedly dismissed by doctors as everything from menstrual discomfort to too much sugar. Refusing to accept those explanations, Jones persisted until a blood test finally revealed the truth: B-cell acute lymphoblastic leukemia, an aggressive form of blood cancer.
“I noticed the smaller symptoms, too; getting out of breath, dizziness, tasting blood, weight loss, bloating, loss of appetite, extreme fatigue, and itchy skin,” Jones explained.
This time, Jones’ doctor said she had a case of sciatica. According to the New England Journal of Medicine, sciatica is “pain that extends from the buttock down the course of the sciatic nerve,” which goes from the lower back down the leg.
“I felt like there would be no fixing the amount of pain I was in. It was indescribable, yet somehow, I was expected to live as normal,” Jones said.
When it was time for her engagement trip, she tried to juggle the joys with the pain she also felt inside. However, a new symptom took hold of what should have been one of her most proudest moments.
“I got a new and alarming symptom of night sweats. I would wake up absolutely drenched in the morning, but I assumed it was from too much Ibuprofen and drinking alcohol. Still, I knew something definitely wasn’t right,” Jones explained.
When she went back to the doctor, Jones was determined for clear answers and not an easily dismissive symptom explanation. She underwent blood tests, which finally brought forth some answers.
Finally, A Diagnosis
Jones was diagnosed with B-cell acute lymphoblastic leukemia. According to the National Cancer Institute, this type of leukemia is “an aggressive (fast-growing) type of leukemia (blood cancer) in which too many B-cell lymphoblasts (immature white blood cells) are found in the bone marrow and blood. It is the most common type of acute lymphoblastic leukemia (ALL).”
“I had nothing to say apart from asking if I would be OK, as the only understanding I had of leukemia was from reading and watching [the Cameron Diaz film] My Sister’s Keeper.”
Jones soon began treatment, which she says started with steroids to lower her high white-cell count and some antibiotics. She then began chemotherapy.
“I had four cycles before starting maintenance chemo, which should have been almost two years long,” Jones explained.
The treatment brought forth changes to her body, which impacted her emotionally just as much as it did physically.
“When I started to see changes in my body, I struggled. I put on quite a bit of weight, my face was swollen from steroids, my body shape changed, and none of my clothes fit. These drastic changes are a lot to cope with, which is why I believe cancer is equally a mental battle as much as it is physical,” Jones explained.
A major health challenge that causes noticeable changes to your appearance can impact how you feel, physically and emotionally. Psychiatrist Dr. Marianna Strongin encourages cancer patients to look at and appreciate the parts of their bodies that were affected by treatment to take back ownership.
“When you spend more time embracing your whole self, you begin to reshape your connection with your body. Though the shift may be gradual, it allows you to eventually honor and thank your body for all it carries,” says Strongin.
A year after Jones’ symptoms began, she had finally reached remission after completing initial treatment. However, shortly after ringing the cancer bell in the Spring 2025, she experienced a relapse, meaning she needed more chemotherapy.
Research published in Blood Cancer Journal says that, “Acute lymphoblastic leukemia (ALL) often relapses early after the treatment course, within the first two years from the initial diagnosis.”
Part of Jones’ treatment also included CAR T-cell therapy, a treatment approved by the Food and Drug Administration (FDA) to treat relapsed and treatment-resistant acute lymphoblastic leukemia (ALL), B-cell lymphoma (LBCL), and mantle cell lymphoma.
Dr. Matthew Davids Explains CAR T Cell Therapy.
“With CAR T cell therapy, T cells are taken out of the patient and educated outside of the body to recognize [cancer] cells,” Dr. Matthew Davids, a hematologist-oncologist at Dana Farber Cancer Institute, tells SurvivorNet.
CAR T cell therapy reengineers disease-fighting immune cells to recognize and attack cancer cells. It has revolutionized the way doctors treat relapsed and resistant blood cancers, and the survival rates in these advanced cancers prove it.
Jones hopes others learning of her cancer journey consider adopting her mentality of staunchly advocating for yourself, even if that means being pushy to get satisfactory answers for what is going on with your health.
“Keep pushing for answers or a second opinion,” Jones said.
WATCH: How to Advocate for Yourself
Dr. Zuri Murrell, a colorectal cancer surgeon and Director of the Cedars-Sinai Colorectal Cancer Center, recommends that patients go into each doctor’s appointment with a plan.
“My plan would be, hey, doc, I would prefer to see whether or not this treatment you have works. But let me come back in a month. If it’s not working in a month, what would the next step be? And the doctor should be able to tell you, well, if it’s not working in a month, then I would do this,” Dr. Murrell explained while encouraging patients to advocate for themselves more assertively.
National Cancer Institute chief of surgery, Dr. Steven Rosenberg, holds a similar view, as he explains to SurvivorNet.
“If I had any advice for you following a cancer diagnosis, it would be, first, to seek out multiple opinions as to the best care,” Dr. Rosenberg said.
WATCH: The Difference a Second Opinion Can Make.
“Finding a doctor who is up on the latest information is important, and it’s always important to get other opinions so that you can make the best decisions for yourself in consultation with your care providers,” Dr. Rosenberg continued.
Better Understanding Jones’ Diagnosis
Acute lymphocytic leukemia (ALL) tends to impact children and people over 50, according to the American Cancer Society. The ACS adds that known symptoms for ALL include:
- Fatigue or weakness
- Dizziness
- Shortness of breath
- Bruises or red or purple spots on the skin
- Fever
- Unexplained weight-loss
- Night sweats
Common ALL treatment includes chemotherapy, targeted therapy – which targets how cancer cells grow – or immunotherapy, which uses the patient’s reengineered immune cells to fight the cancer. Sometimes, a stem cell transplant is also an option, where the patient’s original bone marrow will be replaced by healthier bone marrow.
Expert Resources for Leukemia Patients
- Acute Myeloid Leukemia (AML) — What Are The Symptoms?
- Genetics Of Acute Myeloid Leukemia –What Is A Subgroup?
- How Do Doctors Determine When to Treat Chronic Lymphocytic Leukemia (CLL)?
- How To Recognize Symptoms Of Acute Myeloid Leukemia
- Jaypirca: A New Beacon of Hope in the Fight Against Chronic Lymphocytic Leukemia
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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