Teen’s ‘Muscular Pain’ In Lower Back & Weight Loss Dismissed Until Blood Test Revealed Acute Lymphoblastic Leukemia (ALL)

Sharing his story with South West News Service (SWNS) as per The Mirror, Chester-Canavan said, “I was very shocked when I got the diagnosis. We were in Watford General [hospital] and they went to speak to my mum in a separate room.

“When I went to see her she was crying and when she told me I had leukemia I almost laughed because I was so shocked.”

He explained further, “It started out as muscular pain in my lower back, it was real agony, horrible. After the bike crash it was worse, really severe, more agony.

“It was annoying me, but I never thought anything of it. You never expect it to be you.”

RELATED: All About Acute Lymphoblastic Leukemia (ALL) — The Most Common Questions About the Disease

Chester-Canavan said when his pain started up in the spring of 2025, it lasted for a few days at a time. It wasn’t until he had an accident on his bicycle in the fall that he went to the doctor with “really severe” pain. However, his doctors didn’t seem too concerned.

Then, about a month later, when his pain persisted, his mom brought him back to get checked as she noticed he had lost weight.

His mom Amanda told SWNS, “If I hadn’t shouted for the blood test would we be in a different position? They should’ve been able to see something bigger was going on, that there were red flags.”

The teen will is now undergoing a two-year treatment plan, consisting of chemotherapy and immunotherapy.

He said, “This is just a fork in the road for me … but I’ll come out of it stronger.

“It’s been tough, I’ve been in and out of hospital and in pain, but there are good and bad days. I’m just grateful for everyone, my friends, family and all the charities.”

Learning More About Acute Lymphoblastic Leukemia (ALL)

Being diagnosed with acute lymphoblastic leukemia (ALL) can be emotionally overwhelming.

Patients and their loved ones will typically have many questions about the disease and how it will affect them. Dr. Olalekan Oluwole, a hematologist with Vanderbilt University Medical Center, spoke with SurvivorNet in a previous interview to answer some of the most frequent questions people have after an ALL diagnosis.

What Is Acute Lymphoblastic Leukemia (ALL)?

Dr. Oluwole says many times people worry that they might pass the disease on to other family members and wonder how they got it in the first place. He explained that in most causes it’s a quiet mutation that causes the leukemia.

“It is often not something that is heritable,” Dr. Oluwole told SurvivorNet. “If there happens to be a pattern in a certain family, many times that may be maybe because they were in the same environment. ‘I got exposed to the same thing, right?’ So it is not necessarily something that is heritable or like some of the other cancers, some of the other genes that we know about things like breast cancer. ALL is not like that.”

He said another question he hears frequently is what if people do nothing after a diagnosis.

“The ALL grows very, very fast. If we don’t do anything, it will cause somebody to die within a few weeks,” Dr. Oluwole says, stressing the importance of immediate care.

He says many times the leukemia is rested in the bone marrow, and because it is an abnormal growth, it just keeps dividing.

“It doesn’t follow rules, and it doesn’t stop,” he told SurvivorNet. “Not only that, because this is part of the immune system, the immune system is sorta like the police of the body. So those abnormal cells that have now become cancer, they have the ability to go to many places. They go into the blood, and they often go into the tissue or the lining around the brain.”

RELATED: ‘The Voice’ Contestant Andrew Marshall On His Leukemia Battle at 16 and How Meeting John Mayer Got Him Through Dark Times

“By the time somebody comes to us and they have ALL we already assume that it has gone everywhere in the body, and we have to treat them like that,” Dr. Oluwole says.

He says many patients present with fever or infections because the bone marrow has “failed in its ability to make other types of blood cells.”

As for support after such a life-changing diagnosis, he says there are trained professionals such as have case managers and hospital navigators exist to aid people through their cancer journeys.

“Cancer is a really life-changing diagnosis and we would like our patients to know they don’t have to feel as if they are on their own.”

Understanding Leukemia and Its Various Types

Leukemia is a type of blood cancer that originates in the bone marrow and leads to the overproduction of abnormal white blood cells. These cells can crowd out healthy ones and interfere with the body’s ability to fight infection, carry oxygen, and prevent bleeding.

Leukemia is categorized based on:

Progression speed:

• Acute leukemia involves immature cells and progresses rapidly.
• Chronic leukemia affects mature cells and develops more slowly.

Cell origin:

• Myeloid leukemia arises from cells that form red blood cells, platelets, and certain white blood cells.
• Lymphocytic leukemia affects cells that become lymphocytes, a type of immune cell.

Main Subtypes of Leukemia:

Here are four key forms:

• Acute Myeloid Leukemia (AML) – Fast-growing; starts in immature myeloid cells; aggressive and serious
• Chronic Myeloid Leukemia (CML) – Slow-growing; affects mature myeloid cells; less aggressive than AML
• Acute Lymphocytic Leukemia (ALL) – Rapid progression; begins in immature lymphocytes; common in children
• Chronic Lymphocytic Leukemia (CLL) – Slow progression; develops from mature lymphocytes; more common in older adults

It’s important to note that chronic forms of leukemia tend to be less aggressive but may require longer treatment periods compared to acute types.

Symptoms & Diagnosis

Signs vary by leukemia type and can depend on the patient’s age, medical history, and disease stage. Common symptoms may include:

• Fatigue and weakness
• Frequent infections
• Easy bruising or bleeding
• Swollen lymph nodes
• Bone pain
• Unexplained weight loss

The Importance of Advocating for Yourself

Standing up for yourself is important. If you feel that you’re being dismissed or mistreated by a doctor. Getting a second opinion is crucial if something doesn’t feel right. Experts tell SurvivorNet that no one knows your body better than you, so if you feel like something is wrong, keep pushing for answers.

Dr. Zuri Murrell, a colorectal surgeon at Cedars-Sinai Medical Center, previously told SurvivorNet that sometimes, patients need to be pushy.

Be Pushy, Be Your Own Advocate… Don’t Settle

“From a doctor’s perspective, every problem should have a diagnosis, a treatment, a plan for follow-up, and a plan for what happens next if the treatment doesn’t work,” Dr. Murrell said.

And as a patient, “If you don’t feel like each of these four things has been accomplished, just ask! Even if it requires multiple visits or seeing additional providers for a second opinion, always be your own advocate.”

Ultimately, patients advocating for their health can lead to better patient outcomes. This is especially important when you find your doctor has misdiagnosed your symptoms.

A component of advocating for yourself in healthcare includes going back to the doctor multiple times and even getting multiple opinions.

Dr. Steven Rosenberg is the National Cancer Institute Chief of Surgery, and he previously told SurvivorNet about the advantages of getting input from multiple doctors.

Cancer research legend urges patients to get multiple opinions.

“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. Because finding a doctor who is up to the latest of information is important,” Dr. Rosenberg said.

How Car T-cell Therapy Offers Hope for Some Blood Cancer Patients

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

If you’re living with leukemia, you may be talking with your care team about what your ongoing treatment could look like. After hearing about CAR‑T therapy, it’s natural to wonder whether it might be right for you—or whether another standard treatment better fits your specific type of leukemia. This list of questions can help guide your conversation with your doctor.

• What treatment plan do you recommend for my specific type of ALL, and why?
• What are the goals of each treatment phase (induction, consolidation, maintenance), and how long will they last?
• What side effects should I expect from chemotherapy, targeted therapy, or other treatments, and how can we manage them?
• Would a stem cell transplant or CAR‑T cell therapy be appropriate for my case, and what are the risks and benefits?
• How will treatment affect my daily life, including work, family responsibilities, and long‑term health?

Contributing: SurvivorNet Staff

Learn more about SurvivorNet's rigorous medical review process.

---