Recognizing the Signs of Leukemia and Advocating for Yourself
- After months of dismissed back pain and weight loss, 16-year-old Kit Chester-Canavan, from the U.K., was diagnosed with acute lymphoblastic leukemia when his mother pushed for further testing.
- Acute lymphoblastic leukemia, or ALL, is a type of leukemia where the bone marrow makes too many immature lymphocytes, a type of white blood cell. It is also called acute lymphocytic leukemia.
- At SurvivorNet, we always encourage people to advocate for themselves when it comes to cancer and, more generally, healthcare. When it comes to a child, the parent must become the advocate.
- Seeking multiple opinions is one way to make sure you or your child is getting the proper care and attention. You should also try to remember that not all doctors are in agreement. Recommendations for further testing or treatment options can vary, and sometimes itโs essential to talk with multiple medical professionals.
Chester-Canavan was ultimately diagnosed with an aggressive type of cancer of the blood and bone marrow, called Acute lymphoblastic leukemia (ALL).
Read More“It was annoying me, but I never thought anything of it. You never expect it to be you.”

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.ย 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 itโs a quiet mutation that causes the leukemia.
โIt is often not something that is heritable,โ Dr. Oluwole told SurvivorNet. โIf there happens to be a pattern in a certain family, many times that may be maybe because they were in the same environment. โI got exposed to the same thing, right?โ 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.โ
He said another question he hears frequently is what if people do nothing after a diagnosis.
โThe ALL grows very, very fast. If we donโt do anything, it will cause somebody to die within a few weeks,โ Dr. Oluwole says, stressing the importance of immediate care.
More Resources On Leukemia
- All About Acute Lymphoblastic Leukemia: Answers to the Most Common Questions About the Disease
- What Is Acute Lymphoblastic Leukemia (ALL)?
- Acute Myeloid Leukemia (AML) — What Are The Symptoms?
- Acute Myeloid Leukemia (AML): How Do I Make Treatment Decisions?
- How Do Doctors Determine When to Treat Chronic Lymphocytic Leukemia (CLL)?
- Myeloproliferative Neoplasms vs. Leukemia
- Targeted Therapy for Chronic Myeloid Leukemia: Tyrosine Kinase Inhibitors (TKIs)
He says many times the leukemia is rested in the bone marrow, and because it is an abnormal growth, it just keeps dividing.
โIt doesnโt follow rules, and it doesnโt stop,โ he told SurvivorNet. โNot 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.โ
โBy 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,โ Dr. Oluwole says.
He says many patients present with fever or infections because the bone marrow has โfailed in its ability to make other types of blood cells.โ
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.
โCancer is a really life-changing diagnosis and we would like our patients to know they donโt have to feel as if they are on their own.โ
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 bodyโs 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) โ Fast-growing; starts in immature myeloid cells; aggressive and serious
- Chronic Myeloid Leukemia (CML) โ Slow-growing; affects mature myeloid cells; less aggressive than AML
- Acute Lymphocytic Leukemia (ALL) โ Rapid progression; begins in immature lymphocytes; common in children
- Chronic Lymphocytic Leukemia (CLL) โ Slow progression; develops from mature lymphocytes; more common in older adults
Itโs 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 patientโs 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 youโre being dismissed or mistreated by a doctor. Getting a second opinion is crucial if something doesnโt 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 Advocateโฆ Donโt Settle
โFrom a doctorโs perspective, every problem should have a diagnosis, a treatment, a plan for follow-up, and a plan for what happens next if the treatment doesnโt work,โ Dr. Murrell said.
And as a patient, โIf you donโt 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.โ
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 Rosenbergย 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.
โIf 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,โ Dr. Rosenberg said.
How Car T-cell Therapy Offers Hope for Some Blood Cancer Patients
CAR T-cell therapy transforms a patientโs own immune cells into powerful cancer fighters. The journey begins with T-cellsโwhite blood cells that help the immune system detect and destroy threats like viruses and cancer. Once collected from the patientโs 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 proteinsโcalled antigensโon 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.
โCAR-T therapy aims to give โeyesโ 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 โseeโ the cancer cellsโฆ They will seek out the cancer and kill it, much like the video game Pacman,โ 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 patientโs 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, youโll 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.
Whatโs 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.
โSome of these patients had three, four, or five prior lines of therapy, and we were able to save their lives,โ saidย Dr. Stephen Schuster, director of the Abramson Cancer Centerโs lymphoma program, in an interview with SurvivorNet.
Medical research has shown response rates of between 80 and 100 percent. โItโs really unprecedented. This is something we had never seen before for patients who have had six or seven prior lines of therapy,โ saysย 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 doesnโt 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.
โThatโs very normal, and it usually resolves in the first month,โ says hematologist Dr. Nina Shah.
However, CRS can sometimes be more serious. It occurs when the therapy causes a surge of cytokinesโtiny immune-signaling proteinsโto 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, itโs important to note that CRS can, in rare instances, become life-threatening.
Currently, scientists arenโt sure whether the side effects correlate with how well the treatment is working, so itโs difficult to tell patients whether their side effects or lack of them are a good or bad thing. โAll I can say is that every patient is different, and every patient has a different course,โ says Dr. Shah.
Data shows that the quality of life for people who have undergone CAR T-cell therapy โactually 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,โ says Dr. Shah.
If youโre considering CAR T-cell therapy, talk with your doctor about all potential side effectsโthe mild, the serious, and everything in between.
Treatment doesnโt end once youโve received the CAR T-cell infusion. โThey 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,โย Dr. Julie Vose, chief of hematology/oncology at the University of Nebraska Medical Center, tells SurvivorNet.
Questions to Ask Your Doctor
If youโre living with leukemia, you may be talking with your care team about what your ongoing treatment could look like. After hearing about CARโT therapy, itโs natural to wonder whether it might be right for youโor 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 CARโT 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 longโterm health?
Contributing: SurvivorNet Staff
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