Recognizing The Signs of Leukemia
- Ashley Kent, 20, was diagnosed with chronic myeloid leukemia, or CML, after going to the ER for a completely unrelated accident. She had been experiencing “really weird” fatiegue and night sweats for a year, but doctors didn’t think there was anything seriously wrong with her.
- Leukemia is a type of blood cancer that develops when the body produces large quantities of abnormal white blood cells, preventing the bone marrow from producing any other type of cell. In CML, immature white blood cells form and uncontrollably multiply and divide, creating the abnormal BCR-ABL1 gene that’s responsible for turning healthy cells into CML cells..
- Leukemia can present seemingly benign symptoms, including fever or chills, persistent fatigue, weakness, losing weight without trying, swollen lymph nodes, easy bleeding or bruising, recurrent nosebleeds, tiny red spots in your skin (petechiae), and excessive sweating. These are not exclusive to leukemia, but you should see your doctor if these symptoms concern you.
- One of our experts says people diagnosed with CML have a “quite favorable” prognosis with modern treatments. Chemotherapy and stem cell transplants can be used to treat CML, but targeted therapies have become a mainstay in CML treatment.
Kent wasn’t feeling like herself for just about the entirety of 2021, and doctor visits never seemed to get her to the answers she needed.
Read MoreHow Is CML Diagnosed Without Obvious Symptoms?
After a trip to the emergency room, blood work revealed that her white blood cell count was “extremely high.” So high, in fact, that one ER doctor said her numbers were at the level of a blood cancer patient.
“He instructed me to get retested in a week, to double check if it was accurate,” she explained. “I kind of brushed it off, and didn't think much about it. Then when I told my mom what the doctor said, she insisted I get retested right away. I'm so thankful that she did, because when I finally did, the numbers were still extremely high.”
Kent went to see a hematologist-oncologist the next week. There, she received her diagnosis of chronic myeloid leukemia (CML), a type of cancer of the white blood cells. It’s also known as chronic myelogenous leukemia
“I was in complete denial,” she wrote. “After all, I thought I was a healthy 20-year-old woman, how could this be possible?”
For treatment, Kent received chemotherapy and immunotherapy, along with targeted therapy. Her targeted therapy was a type of oral medication called tyrosine kinase inhibitor (TKI), which blocks the effects of the abnormal BCR:ABL1 gene found in people with CML, which is responsible for turning healthy cells into CML cells. Kent was prescribed dasatinib (brand name Sprycel).
“These treatments are so amazing and lifesaving, but they also come with a lot of side effects,” she wrote. “For instance, I started getting a lot of really bad skin rashes I had angioedema, which basically looks like a really bad allergic reaction, which was a result of my body rejecting the medication.
Angiodema is a skin reaction similar to hives but that affects the deeper layers, and it can be triggered by medication, according to the Mayo Clinic. Symptoms include welts and swelling around the eyes, cheeks and lips.
“I had to be hospitalized many times as a result, which was really scary. My world was basically turned upside down.”
Thankfully, Kent had supportive friends and family by her side every step of the way.
“For me, I think it's really helpful to know your loved ones are there for youbut it's also important to not always talk about your illness,” she wrote. “It means so much to me when my family can make jokes, laugh with me, and have fun. The small thingslike asking if you need food or a coffeecan also mean so much.”
RELATED: Be Pushy, Be Your Own Advocate… Don't Settle
By sharing her story, Kent wants to educate others about what it’s like to live with CML. She also hopes she can inspire others to search for answers when your body gives you signs that something is wrong.
“On a separate note, for anyone out there who is experiencing confusing symptoms: have your blood checked, get your routine checkups, and don't take no for an answer.”
What Is A Blood Cancer? How Is It Different?
What Is Leukemia?
Leukemia is a blood cancer that develops when the body produces large quantities of abnormal white blood cells. These cells prevent the bone marrow from producing any other type of cell including, red blood cells and platelets.
"One cell got really selfish and decided that it needed to take up all the resources of everybody else, and, in doing so, took up space and energy from the rest of the body," Dr. Nina Shah, a hematologist at University of California San Francisco, explained.
In a more general sense, blood cancer means that your bone marrow is not functioning properly.
"And when your bone marrow doesn't function correctly, it means that you can have something happen to you like anemia," she said. "Or you can have low platelets, which makes it possible for you to bleed easily. Or your immune system is not functioning correctly."
Symptoms of leukemia can vary depending on the type of leukemia, and can present as seemingly benign. Common signs and symptoms of the disease include:
- Fever or chills
- Persistent fatigue, weakness
- Frequent or severe infections
- Losing weight without trying
- Swollen lymph nodes, enlarged liver or spleen
- Easy bleeding or bruising
- Recurrent nosebleeds
- Tiny red spots in your skin (petechiae)
- Excessive sweating, especially at night
- Bone pain or tenderness
These signs and symptoms are not exclusive to leukemia, but if you notice them or any other changes to your health, you should see a doctor promptly.
Understanding Chronic Myeloid Leukemia
Chronic myeloid leukemia occurs when blast cells (or immature white blood cells) form and uncontrollably multiply and divide. This, in turn, creates the abnormal BCR-ABL1 gene, which is responsible for turning healthy cells into CML cells.
What Is Chronic Myeloid Leukemia (CML) And How Is It Diagnosed?
“When we think about CML, what happens is there’s a cross of your chromosomes,” Dr. Eric Winer, clinical director of adult leukemia at Dana-Farber Cancer Institute, told SurvivorNet. “So there’s a cross between chromosome nine and chromosome 22, where a piece of chromosome nine ends up on chromosome 22, and a piece of chromosome 22 ends up on chromosome nine.
“When you have that chromosome switching, it puts two genes next to each other, and those two genes are called BCR and ABL. And so the whole gene product is called BCR-ABL.”
As more healthy cells are turned into CML cells, the CML cells build up and spill over into the blood. These cells can also end up in other areas of the body like the spleen, intestinal tract, kidneys and lungs.
"It's important for patients diagnosed with CML to understand that their prognosis is quite favorable," Dr. Jay Yang, leader of the Hematology Oncology Multidisciplinary Team at the Barbara Ann Karmanos Cancer Institute in Detroit, told SurvivorNet. "With modern treatments, most patients will go on to live healthy and productive lives with a normal life expectancy."
What Are The Treatment Options For Advanced Or "Blast" Phase Chronic Myeloid Leukemia?
CML is classified into three distinct phases primarily based on the number of immature white blood cells, or blasts, in a patient's blood and circulation:
- Chronic phase Approximately 85% of people are in the chronic phase of CML when they are initially diagnosed.
- Accelerated phase
- Blast phase
These phases have different treatments and patient outcomes, making them a key part of any CML diagnosis. Also worth noting is the fact that while CML usually grows fairly slowly, it can also turn into a faster-growing, acute leukemia. When it does so, it can become more difficult to treat.
RELATED: The Different Phases Of Chronic Myeloid Leukemia (CML) & Possible Treatments
Chemotherapy and stem cell transplants can be used to treat CML, but targeted therapies have become a staple in CML treatment. These therapies go after specific proteins that control how cancer cells grow, divide and spread.
"CML to me, has been the poster child for targeted medicines," Dr. Frances Arena, medical director at NYU Langone Arena Oncology and Integration, told SurvivorNet. "Back in the day, we only had medicines like hydroxyurea, which was a blatant type of oral chemotherapy, that could keep the blood counts down but could have severe side effects.
“Also, the old chemotherapies didn't go after the molecular signature of the disease the BCR-ABL gene the way new targeted treatments do.”
Targeted Therapy for Chronic Myeloid Leukemia: Tyrosine Kinase Inhibitors (TKIs)
Tyrosine kinase inhibitors (TKIs) are a type of targeted therapy used to treat CML. They work by blocking the protein made by the BCR-ABL1 gene which eventually kills the CML cells.
More than two-thirds of patients with chronic phase CML achieve long-term control of the disease with TKIs despite the fact that TKIs have not been proven to cure CML. People who have an excellent response to TKIs have survival expectations similar to age-matched people without CML.
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