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Nicolas

My name is Nicolas and I am 14 years old. Before my diagnosis I was a completely healthy child, in fact I was rarely ever sick. I played baseball, had straight A’s, and recently had recently got a new puppy. This sense of normalcy came to a screeching halt on January 13, 2018. That’s the day I was admitted into the pediatric ICU and the day I first heard the words, “you have cancer.” My family and I were devastated.

Follow-Up Care

Those who have been treated for MDS are encouraged to:

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:

Ph-Positive ALL Therapy

In addition to chemotherapy combinations, children with Philadelphia chromosomepositive (Ph+) ALL and Philadelphia chromosome-like (Ph-like) ALL are also given a tyrosine kinase inhibitor (TKI) medication.

Tyrosine kinases are enzymes that are a part of many cell functions including cell signaling, growth and division. These enzymes may become too active in patients with an ALL subtype called Philadelphia chromosome-positive ALL (Ph+ ALL).

Tim

I knew multiple myeloma (MM) was a blood cancer. After all, my mom was diagnosed with myeloma at 62 years old in 2005. It’s extremely rare that I should also be diagnosed in 2021, but it happened. There’s no strong data that shows that it’s hereditary at this point. But more doctors are seeing family members being diagnosed. It's also becoming one of the most diagnosed cancers among African Americans.

Rex

In December 2023, I woke up in the middle of the night and couldn’t catch my breath, so my wife called an ambulance. I was taken to a nearby hospital where I was diagnosed with blood cancer, Philadelphia chromosome-positive acute lymphoblastic leukemia (Ph+ ALL), to be exact.

FDA Approves New Type of BTK Inhibitor to Treat Mantle Cell Lymphoma

CML Phases and Prognostic Factors

CML has three phases. The phase of your chronic myeloid leukemia (CML) plays a large part in determining the type of treatment you'll receive. Doctors use diagnostic tests to determine the phase of CML. Determining the CML phase is based primarily on the number of immature white blood cells (blasts) in the patient’s blood and bone marrow. 

Chronic Phase. Most patients are diagnosed with CML in the with chronic phase of the disease.

​People with chronic phase CML:

Sofia

My name is Janaye, and I am the mother of Sofia, age 4. Her father's name is Gary. On September 1, 2023, Sofia was diagnosed with pre-B-cell acute lymphoblastic leukemia (pre-B-ALL). She was three. Today, I will share the story of her diagnosis and our journey thus far.

Chemotherapy

Chemotherapy is the main treatment for ALL. The phases of treatment include the following:

The first phase of chemotherapy is called “induction therapy.” Induction therapy

Chemotherapy and Drug Therapy

Chemotherapy drugs kill fast-growing cells throughout the body, including both cancer cells and normal, healthy cells. The damage to normal, healthy cells can cause side effects. Chemotherapy is typically given in cycles. Each cycle is made up of a certain number of days of treatment, followed by a certain number of days of rest. 

Carol

I traveled with my friends Karen and Beth to Death Valley in February 2020 for a cycling trip where, despite Beth’s fitness and the amount of cycling we’d done, she became short of breath on the steep climbs. She would stop and catch her breath, then continue cycling. This wasn’t normal behavior, but Beth shrugged it off. “We all have good and bad days on the bicycle,” she said. On our last day of cycling, we were planning another hilly route. “You guys go ahead.

Jamie

After he was diagnosed with blood cancer in 2013, Jamie was told by doctors that he’d never walk again, let alone ride a bike. Despite those predictions, he finished a 540-mile ride in June 2019 to raise money for The Leukemia & Lymphoma Society (LLS).

Seth

It was in my sophomore year at the University of Colorado Colorado Springs right around March 2021 when I first discovered the lump in my neck. I was simply doing homework at my desk, and my hand unconsciously brushed against my neck. I stopped and started to feel the unusual lump in my neck.

Soon after that, the tests started.

Treatment Outcomes

Some types of non-Hodgkin lymphoma (NHL) are curable. Some people with other types of NHL are able to keep their disease under control and live good-quality lives with medical treatment.

Click here to access NHL survival statistics.

Jane

In 2008, I retired from teaching art, mostly because I was feeling tired all the time and didn’t want the program I was running to suffer because I couldn’t keep up. I figured it was old age. I was enjoying my first full year of retirement when I woke up with a backache. After two months of tests, in July 2010, I was diagnosed with multiple myeloma, a treatable but not yet curable blood cancer in the plasma cells of the bone marrow. 

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.

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.

Catherine

In March 2014, I woke up at my normal time to get ready for work. I could barely move - I was so ill and every part of my body hurt. I didn't’t think anything of being sick since I had started to feel ill on Sunday and it was just getting worse. I figured that I would stay home sick and be back to work the next day.

Tammy

In February 2023, I developed a cough that would not go away. I went to the doctor twice. Both times I was told it was “long COVID,” and it would eventually go away. I continued with my life as normal and even went on a week-long trip to New York in April where I did a live Peloton Cycle class to celebrate my 400th ride (a milestone and dream come true for me). By the time I got home from New York, I was in bad shape. The cough had progressed, and daily activities were difficult.

Samuel

On June 21, 2019, my sweet, goofy, little boy, Samuel, turned 3 years old, and we had a big celebration. We threw Samuel a beautiful birthday party surrounded by family and friends at a local farm. The kids played, fed the farm animals, went on pony and tractor rides, and ate pizza and cake. It was a day Samuel still remembers and talks about. He has always been so bright, even as a baby, saying words like “tickle” at 10 months old.

Jonathan

Life is such a blessing. Sometimes we think that there’s no way out, we limit ourselves, or we simply think to give up. Truth is, like we say in my family, “Solo hay que estar vivo para ver cosa,” or “You only have to be alive to witness things.”

My parents are first-generation immigrants from the Dominican Republic. I am a cancer survivor.

Immunotherapy

Immunotherapy is a drug therapy that stimulates the immune system. Interferon, a type of immunotherapy, is a substance made naturally by the immune system, but it can also be made in the laboratory. Interferon reduces the growth and division of cancer cells.

Be Your Child’s Advocate

Parents may need to educate other family members, friends, school personnel and healthcare providers about long-term and late effects. Here are some steps parents can take:

Jonathan

This story is memory of my late fiancé, Jonathan Bentley, who passed away from acute promyelocytic leukemia (APL) at the age of 33 after a week-long battle. Jon was a truly amazing person; the type that you wish everyone could meet once in their lifetime. Although he is now gone, I wish to honor his beautiful spirit by sharing a little bit about him.