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Side Effects
Therapy for CLL sometimes produces side effects. Side effects from kinase inhibitor drugs and monoclonal antibody therapy are generally milder than side effects from chemotherapy.
For most patients, treatment side effects are temporary and go away once therapy ends. For other patients, side effects can be more severe, sometimes requiring hospitalization. Some patients never have side effects.
Stem Cell Transplantation
For certain patients with CML, allogeneic stem cell transplantation (the infusion of donor stem cells into a patient) is their best treatment option. However, this type of transplant can cause serious or even life-threatening complications and side effects. In addition, it is often not a good option for older patients or for patients who have other health problems.
Long-Term and Late Effects of Treatment
While treatments for ALL have led to increased survival rates, some may cause significant long-term or late effects. Long-term effects of cancer treatment are medical problems that last for months or years after treatment ends. Late effects are medical problems that do not appear until years, or even possibly decades, after treatment ends.
The long-term and late effects of childhood ALL treatment can include:
Kristen
I am a mom of four, married for 22 years, and was recently diagnosed with a very rare leukemia/lymphoma. I am a licensed speech-language pathologist, health coach, and have my own podcast. I began treatment in January of this year and will follow treatment with a bone marrow transplant. I am an encourager, and my desire is to use this diagnosis to bring hope. I know this journey is not about me! It’s about bringing hope to the hopeless and love to the lonely.
Da’Ni
Thirteen-year-old Da’Ni was diagnosed with acute lymphoblastic leukemia (ALL) in July 2018. She endured eight months of intense treatment before starting maintenance therapy. Da’Ni is currently six months in to maintenance and back in school. She’s an 8th grader and a straight A student. Da’Ni plans to go to medical school and become an oncologist to help children like herself one day.
Mary Kay
Hello, my name is Mary Kay Hettick. I've always thought I was in good health until, in October 2013 when I was diagnosed with acute myeloid leukemia (AML). My life was never the same after that. I endured many days in the hospital doing chemotherapy and having a bone marrow transplant.
Today, I've been in remission for almost five years! If your fighting AML, know that your in good hands.
Side Effects
Chronic myeloid leukemia (CML) treatment can sometimes produce side effects. Most patients can manage their side effects without stopping therapy.
Before you start treatment, talk with your doctor about potential side effects. Drugs and other therapies can prevent or manage many side effects. Many treatment side effects go away or become less noticeable over time.
Ira
In August 2014, at age 48, I was literally in the best shape of my life. I was an avid cyclist, averaging more than 150 miles per week, leading groups of riders for my cycling club, and completing multiple 100-mile century rides in a single season. Over the course of just a few days, while cycling, I noticed a sudden setback in my performance. Virtually overnight I lost stamina, speed, and endurance. Roads or hills I had ridden countless times before instantly became unmanageable. Thinking I was battling the flu or a virus, I visited my doctor. Blood tests revealed an abnormality.
Yesenia
In January 2018, after months of seeking answers and enduring worsening symptoms, I was finally diagnosed with acute lymphoblastic leukemia (ALL). The road to this diagnosis wasn’t easy ― it took three hospital transfers, three bone marrow biopsies, and the loss of my mobility before doctors could pinpoint the cause of my pain. Finally, I was admitted to a hospital close to home where they began aggressive treatment and provided pain management to help with my constant discomfort. By then, I was bedridden and had lost significant muscle, leaving me physically and emotionally drained.
Gabe
When Gabriel ran a fever and wouldn’t settle down at 3:00 a.m. one night, I immediately called our pediatrician. Something just didn’t feel right. Our pediatrician sent us to a local emergency room to get Gabe checked out. Thankfully, nothing was obviously wrong, and the ER chalked it up to a viral illness. However, Gabe’s bloodwork came back a little strange. He had something called “blasts” in his blood, which is abnormal. The doctors told us it could just be because of the virus, and since the rest of his bloodwork looked great, they didn’t think it was leukemia.
Hannah
My name is Hannah Gallant. I am an 11 years old from Quispamsis, New Brunswick Canada. In August 2016, after several trips to the doctor and the hospital because I wasn’t feeling well, my parents brought me to the hospital for blood work. I wasn't worried, because I thought it was just growing pains. We got the results that same day, my parents found out it was a form of leukemia called acute lymphoblastic leukemia (AML). They didn’t tell me until the final diagnosis took place at the IWK. I was very worried, and even though I didn't know what leukemia was.
Heather
The Leukemia & Lymphoma Society’s Light The Night Walk serves as an inspiring, empowering and comforting event, made possible by those who share, remember, and advocate for the fight against cancer. Each year, we here at LLS are graced with countless stories that demonstrate and display the spirit of this event. Heather Lee’s story is one of them.
Kelly
In January 2020, I was a 21-year-old full-time pre-medical student diagnosed with Stage 2E Nodular Sclerosis Classical Hodgkin lymphoma, about three weeks after getting engaged to the love of my life and primary caregiver, Alex. We put our entire lives on hold to begin this battle, but we had a huge support network that cheered us on with the slogan, "Let's Get Excited." I was treated for my cancer at Mercy Hospital in Springfield, Missouri, where Dr. Jessica Snider & Dr. Kimberly Creach successfully cured my cancer.
Sarah
I was diagnosed with B-cell acute lymphoblastic leukemia (B-cell ALL) in October 2020 at the age of 38. It was a shocking diagnosis. I started feeling bad in September with extreme fatigue and some body aches, nothing terribly alarming. I'm a busy wife and mom of two young kids (ages 2 and 8 at the time of diagnosis) with a full-time job and two new puppies. I figured I was just worn out from everything. I had routine bloodwork scheduled for my annual physical. When my primary care doctor received the results, he called and asked me to go to the emergency room.
Judith
In 2016, my Mom/daughter's grandma, Baba (Judith W), was diagnosed with acute myeloid leukemia (AML). After her first round of chemo, she was discharged from a one-month hospital stay on my daughter's third birthday. Best birthday present ever. She continued fighting the disease with more chemo and ultimately received a stem cell transplant from an amazing donor. Amid the uncertainties of her recovery, we hosted our first lemonade stand fundraiser on Mother's Day weekend the following year in hopes of helping.
Treatment Outcomes
AML is a difficult disease to cure, but survival rates for childhood AML have improved over the past several decades. From 2012 to 2018, the 5-year relative survival rate was 69.0 percent for children and adolescents younger than 15 years. However, there is a wide range of outcomes for different subtypes of AML.
For statistics, click here.
Related Links- Download or order LLS's free booklet:
James
I have leukemia/lymphoma and have been fighting this illness for seven years. I became ill in 2011 but made somewhat of a recovery until 2015 when I got really sick (upper respiratory issues) that took the medical system in Las Vegas more than a year to diagnose as leukemia. By the time I was hospitalized the first time, my white cell count was over 38,000. It took three hospitalizations before my illness was diagnosed. By the time I was diagnosed with lymphoma, my lungs had severe, unrecoverable damage, leaving me on oxygen most of the time, even during sleep.
Penny Man (Jonathan)
My name is Jonathan, but I really like to be called "The Penny Man.” I have been collecting pennies for over 15 years and then donating them to The Leukemia & Lymphoma Society (LLS). I first started collecting in high school in 2006 when a classmate of mine passed away from leukemia. My teacher, Mrs. Jean Cassetta, started a schoolwide campaign in partnership with LLS in memory of our friend Andrew, and I never stopped saving pennies since.
Zachary
Two months after we were married, my husband was diagnosed with acute myeloid leukemia (AML) in July 2021. I was 33 weeks pregnant with our first baby when he was admitted to St. Louis University Hospital for the next month of induction treatment. Prior to diagnosis, Zach had been experiencing fatigue and palpitations and would become winded just walking up our flight of stairs. We thought he was having residual effects from some prior illnesses that he was hospitalized for in April and May. We know now that those instances were the beginning of his immune system starting to fail.
Kayla
My journey started on November 26, 2022, just eight weeks after my wedding. I spent Thanksgiving with my family and could feel something just wasn't right. I had visited my primary care doctor a few days before to explain my symptoms of shortness of breath and my stomach feeling bloated. She stated I was young, and there was no need to worry, that it was probably just from having too much salt intake. After, being on indigestion medicine for a few days, my symptoms begin to worsen. I went to my local hospital emergency room due to my shortness of breath.
Maggie
My son, Benjamin, was diagnosed with acute lymphoblastic leukemia in February 2019 at the age of four. Due to the unique nature of his presentation, he was placed in the VHR (very high risk) category and underwent three and a half years of treatment. My background is in theatre and education, but having just moved to New York, I was not working when Benjamin was diagnosed and was lucky enough to be able to devote 100% of my time to him. I spent his treatment years learning as much as I could about the disease and how I could best care for him.
Gina
I was diagnosed with CML on May 25, 2010. Up until December 16, 2013 my disease was managed by oral chemo, then unexpectedly, I went into a blast crisis and progressed to acute lymphoblastic leukemia (ALL). I was told that I may not live to the end of the year unless an aggressive regimen of in-patient chemo, administered at the University of Pennsylvania hospital, was able to slow the proliferation of blast cells. Thankfully, the chemo worked and I began the preparation for a stem cell transplant. I had the stem cell transplant on May 1, 2014.
Michelle
I was originally diagnosed with Philadelphia chromosome + acute lymphoblastic leukemia (Ph+ ALL) in June 2017. My first month of treatment was a breeze, and I tolerated IV chemo well. Unfortunately, the rest of my two years of treatment wasn’t as smooth. I ended up in the pediatric intensive care unit for over a month. I was experiencing methotrexate toxicity and fighting for my life. Once I started recovering, I relearned how to walk, got my strength back, and continued fighting my fight. I was in remission by August 2017 and then finished treatment in June 2019!!
Madeline
I was diagnosed with acute myeloid leukemia (AML) in June of 2022. I was feeling fine and went for a routine physical where it was discovered that my white blood cell count was very low. This was the beginning of my nightmare. I was slotted to give my husband my kidney before I was diagnosed and had to quickly find another donor. We did and he got his transplant and is doing well. I was hospitalized for 8 weeks where I received very aggressive induction chemo that left me malnourished and on death’s doorstep.
Zach
Zach Guillot was a normal, healthy, superhero-loving kid when he was diagnosed with acute myeloid leukemia (AML) at age five.