Search Results

Paige

On September 8, 2020, my youngest baby Paige was diagnosed with high-risk B-cell acute lymphoblastic leukemia (HR B-cell ALL) at Children's National Medical Center in Washington D.C. This diagnosis came after two weeks of visually noticing a change in Paige's behavior. By that point, she had been suffering from a high fever (102-104°) for two weeks after being misdiagnosed by Patient First Urgent Care. She had extreme fatigue, complaints of sore muscles, and literally not wanting to do anything. But this discovery happened by chance.

Lila

It’s January 11th, 2017, well past midnight, probably around 3 am. I am on the side of a mountain in Africa, 1000 miles away from home, in pitch black out, -20º with the winds, and I can barely feel my fingers. All I can see is the headlamp spot of light shining on the trail.

I think to myself, “Well, Lila, maybe this was not your best idea!” I look up and call my teammate in front of me, my best friend Dawn, and say, “Dawn, I am sorry I talked you into this.” She just looks at me, gives a knowing smile, then turns back to the path in front of us!

Gabriele

For approximately a year leading up to my diagnosis, I began experiencing various symptoms and was generally feeling unwell. About 3 months prior to diagnosis, my joint and bone pain started impacting my daily life heavily. I was struggling to lift my arms and walk normally. Of the many symptoms, the most extreme were breathing problems, extreme fatigue, headaches, and even passing out. I was admitted to Roswell Park Cancer Institute in April 2022 extremely neutropenic and anemic. At 26 years old I was diagnosed with acute myeloid leukemia (AML) and began chemotherapy immediately.

Splenectomy

The spleen is an organ on the left side of the body, near the stomach. CLL cells can collect in the spleen, causing it to become enlarged. Sometimes, the spleen becomes so large that it presses on nearby organs, causing pain. Also, an enlarged spleen may lower a person’s blood cell counts to dangerous levels. An operation to remove the spleen is called a splenectomy. Splenectomy is helpful for select patients. The operation may reduce pain and help improve blood counts. 

Follow-Up Care

Click here for information about follow-up care, including what to expect, long-term and late effects of treatment, survivorship clinics, and other resources such as The National Comprehensive Cancer Network (NCCN) treatment guidelines.

 Use the Survivorship Workbook to collect all the important information you need throughout diagnosis, treatment, follow-up care and long-term management of a blood cancer.

Hudson

Hudson entered the world on March 31, 2017. This is the day my heart left my own chest and was beating outside of my body. My whole world was immediately consumed by this little, perfect bundle of cuteness. As far as cancer risk goes, he didn’t really have any. He had a healthy infancy and toddlerhood, barely needing a Band-Aid. This is the case for so many children. In November of 2018, Hudson became a big brother to Violet. I can remember being in the studio for Violet’s newborn photos when the photographer had Hudson lay beside Violet.

Rob

I have this thing inside me called chronic myelomonocytic leukemia (CMML). It’s a rare form of leukemia that affects the blood and bone marrow. Only 1,100 cases are diagnosed a year in the U.S. Four out of a million. I do not want to be that special.

Ph-Positive ALL Therapy

About 25 percent of adults with ALL have a subtype called “Ph-positive ALL” (also known as “Ph+ ALL” or “Philadelphia chromosome-positive ALL”). The leukemia cells of these patients have the Philadelphia chromosome, which is formed by a translocation between parts of chromosomes 9 and 22. A piece of chromosome 9 breaks off and attaches to chromosome 22, and a piece of chromosome 22 similarly breaks off and attaches to chromosome 9. The abnormal chromosome 22 is known as the Philadelphia chromosome. This chromosomal alteration creates a fusion gene called BCR-ABL1.

Relapsed and Refractory

Some chronic myeloid leukemia (CML) patients still have leukemia cells in their bone marrow after initial treatment with a tyrosine kinase inhibitor (TKI). "Refractory" is the term used to refer to a disease that has not responded to the initial treatment. Relapse is the term used to refer to the return of a disease after a period of improvement. 

TKIs used for "initial" or first-line treatment for chronic phase CML include:

Follow-Up Care

Click here for information about follow-up care, including what to expect, long-term and late effects of treatment, survivorship clinics, and other resources such as The National Comprehensive Cancer Network (NCCN) treatment guidelines.

 Use the Survivorship Workbook to collect all the important information you need throughout diagnosis, treatment, follow-up care and long-term management of a blood cancer.

AML Subtypes

Doctors classify acute myeloid leukemia (AML) into subtypes by using various tests. It's important to know your AML subtype because it plays a large part in determining the type of treatment you'll receive.

Claire

In February 2019, our daughter, Claire, was diagnosed with a rare form of acute myeloid leukemia (AML) just three short months after we celebrated her second birthday. We noticed a few discolored bumps on her body and assumed it was just a reaction to a new soap I had purchased, but then they began to pop up on other parts of her body.

Signs and Symptoms

Signs and symptoms are changes in the body that may indicate the presence of disease. A sign is a change that the doctor sees during an exam or in a laboratory test result. A symptom is a change that a patient can see and/or feel.

It is common for a child with ALL to feel a loss of well-being because of the lack of normal, healthy blood cells.

Symptoms of a low red blood cell count (anemia) include:

Treatment

It's important that your doctor is experienced in treating patients with acute myeloid leukemia (AML) or has access to an AML specialist.

Doctors use several types of treatment for adults with AML, some at different stages. Click on the links below to read more about each type of treatment.

Jan

After returning from a diving trip to Cyprus in November 2021, I started having headaches and sweating at night. Just two weeks later, I was diagnosed with acute leukemia and was immediately hospitalized. Two days later, I had my first round of chemotherapy as my case was pretty serious. Chemotherapy became a big part of my everyday life for the next three months.

After one week with no chemo, I started getting my life back, just partially. I made it thanks to amazing doctors, nurses, inner strength, positivity, and healthy food. Yoga breathing helped a lot too.

Thomas

I was declared to be in remission from acute lymphoblastic leukemia (ALL) on Sept 1, 2015. To celebrate one year of remission, I biked from Waukesha, WI to Port Washington, WI, a total of 104 miles round trip.

This photo is from the deck of Smith Brothers in Port Washington, the half way point of the ride. I was joined by one of my caregivers, Maria, of St. Luke's for the first 25 miles of the ride. After the initial round of chemo in 2015, I couldn't even bike 2 miles.

Dr. Carroll

William Carroll, M.D., is the leader of a five-year LLS Specialized Center of Research (SCOR) grant.

Lisa

I was diagnosed with non-Hodgkin follicular lymphoma in December 1995 after finding a lump in my neck. My son had just turned 7 years old and I was so afraid I would not be around to see him grow up.

Today, my son is almost 27.  I have gone though many battles with this illness throughout my 20-year fight. I've taken pills, I've had chemotherapy and last year I finished radiation. I currently have two tumors but I am on a "watch and wait" protocol. No symptoms and no treatments.

Johanna

On April 5, 2019, my life changed forever. What started as a simple ER visit for some light chest pain turned into a two-and-a-half-year battle with acute lymphoblastic leukemia (ALL). During treatment, I had many ups and downs but pushed myself through online courses at my university. One of the many things that brought me joy during this time was how much support I had from friends, family, and even complete strangers. My university held a Light The Night (LTN) event, and it was amazing seeing all the support from my community.

John

I have been battling acute myeloid leukemia (AML) since October 24, 2023. I am an outpatient at Roswell Park currently. I spent over three to four months inpatient, and I had a bone marrow transplant on February 9, 2024.

Molly

I did this Facebook challenge in memory of my father. He died of acute lymphoblastic leukemia (ALL) just after being diagnosed three months prior. He died on my wedding anniversary. I took care of him until the end. I am a nurse, and it made it much easier to care for him. He meant the world to me. 

He loved doing anything outside. Fishing and hunting were his favorites. He was a hall-of-fame bowler, loved to golf, and enjoyed cooking on the grill. His laugh was contagious. I miss him so much every day. 

Nikolas

Hello, my name is Nikolas Davison. I am 14 years old (almost 15 in July) and have battled acute lymphoblastic leukemia (ALL) for the past four years, but I am now done with chemo and getting my port removed soon.

In November 2016, I was misdiagnosed with appendicitis and was taken to the hospital by my father, where they took my blood and ran several tests. This was a painful experience to go through and I was very scared. After more tests, they knew that I had cancer. I was shocked, scared and horrified. I never thought in a million years that I would get cancer.

Stanley

Stanley was only 13 months old when he was diagnosed. He was a happy and healthy baby boy.  Showing no previous symptoms or signs of sickness, Stanley was rushed to the ER one late Wednesday night because his parents, Joe and Krissi, thought he might have swallowed something.  That was December 16, 2015. By 8p.m.

Sally

In January 2021, my new life journey was about to begin. After doctor visits, bloodwork, testing, and finally complete shock, the diagnosis of cancer was given to me and my family, large B-cell lymphoma (DLBCL), a type of non-Hodgkin lymphoma (NHL). We were in disbelief but ready to fight. As my oncologist stated, “You have an aggressive form of cancer, we will treat you aggressively, and it is potentially curable.” Those last two words were what I needed to hear. Let the fight begin. 

Robert

My story starts in March 1983. I was lucky to have been chosen to attend Squadron Officer School in residence at Maxwell, AFB, Alabama. I was, I thought, a healthy 28-year-old and newly married with a promotion to captain the following month. Then, a worrying symptom suddenly occurred. Everything was going dark briefly under physical exertion. I shrugged it off as heat exhaustion until just climbing one flight of stairs resulted in a blackout without unconsciousness. It was then I decided to drive home for the weekend to advise my wife and decide my course of action.