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Refractory and Relapsed Childhood ALL

Most children with ALL are cured with standard chemotherapy treatments. But about 15 percent of young patients have ALL that returns after remission. This is referred to as a “relapse” of the disease (or “relapsed ALL”). Some children are unable to achieve a remission because their cancer does not respond to treatment. In these cases, the disease is referred to as “refractory” (or “refractory ALL”).

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.

Lumbar Puncture

A lumbar puncture — also known as a spinal tap — is used to collect the cerebrospinal fluid (CSF) surrounding the brain and spinal cord to detect disease, infection or injury. A lumbar puncture can tell doctors whether blood cancer cells are present in the sample. In addition, the pressure in the fluid surrounding the brain and spinal cord can be measured to provide other important information.

How Is It Done?

Fertility

People in the YA age group can be in many different stages of life. You may have children; you may want children in the future; you may not want children now, but may change your mind; or you may not have given it much thought at all. Cancer treatment can affect fertility in both women and men making it difficult to conceive a child in the future. A cancer diagnosis may require you to think seriously about children.

Not all cancer treatments affect fertility. Your risk depends on several factors, including

Your Treatment Team

Oncologists and hematologists are specialists who treat persons with leukemia, lymphoma, myeloma, myelodysplastic syndromes and myeloproliferative diseases. Pediatric hematologist oncologists treat children, adolescents and some young adults who have blood cancers. The oncologist or hematologist-oncologist coordinates a treatment and follow-up plan that involves other doctors as well as nurses, social workers, case managers and nutritionists.

 

The Affordable Care Act (ACA)

The Affordable Care Act’s Patient Protections

The Affordable Care Act requires health insurance plans sold through www.healthcare.gov and its state-based marketplaces to comply with a number of requirements. Many of these – including the ones described below – are meant to ensure that patients have access to meaningful health insurance coverage. It’s important to be aware that some health plans, available today through non-governmental sites, may not include these patient protections.

Treatment

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

Types of ALL Treatment

Doctors use several types of approaches and treatment combinations for ALL:

Treatment

It's important that your doctor is experienced in treating patients with hairy cell leukemia or works in consultation with a hairy cell leukemia specialist. This type of specialist is usually called a hematologist oncologist.

Types of Hairy Cell Leukemia Treatment

For many people with hairy cell leukemia, starting treatment helps them focus on moving ahead and looking forward to their disease's remission.

Several types of approaches and treatment are used for adults with hairy cell leukemia, some at different stages:

Stem Cell Transplantation with High-Dose Chemotherapy

High-dose chemotherapy and stem cell transplantation are important parts of treatment plans for eligible, recently diagnosed myeloma patients. One of the following types of transplants may be used:

Reese

Before we knew the world of childhood leukemia, and long before bone marrow transplant was a part of our vocabulary, we had sweet little identical twin girls, named Reese and Quinn. The twins were born in Chicago on April 10, 2014. Reese and Quinn were healthy babies who grew into healthy toddlers and then their little sister Claire joined our world in 2016. These sisters are the best of friends and the greatest supporters of each other.

Brandi

My concerns began to rise when I noticed some spotting/bleeding between cycles that would last for 10 minutes or less. Additionally, I also started to experience slight abdominal cramps first thing in the morning. I’ve always been a deep sleeper and rarely woke up in the middle of the night to use the restroom, so nothing seemed out of the ordinary. That escalated to me waking up multiple times in the middle of the night to try to use the restroom, sometimes without cramps and other times with extreme abdominal cramps.

Chemotherapy

Because of acute lymphoblastic leukemia's (ALL's) rapid growth, most patients need to start chemotherapy soon after diagnosis.

Chemotherapy drugs kill fast-growing cells throughout the body including cancer cells and normal, healthy cells. The damage to normal, healthy cells can cause side effects. Yet, not everyone experiences side effects the same way. 

ALL treatment consists of:

Mark

My wife, Linda, and I celebrate and lament our first anniversary; I was diagnosed with chronic myeloid leukemia (CML) on June 5, 2023. While death is not impending, our future has radically changed. There are losses, namely a more predictable and imaginable future. Certain certainties are broken that cannot be fixed. We search for new norms that require reimagining hopes, dreams, and aspirations. Of course, we will not give up on illness-specific hope that remission comes sooner than later and that side effects subside. No proof exists that we will get what we hope for.

Healthy Eating

People living with cancer may have different nutrition goals and challenges, depending on their:

Gabby

Her name is Gabriella Sarai. We call her Gabby! She is a feisty little four year old. She has been running circles around her two older brothers, her dad, and me since she was able to walk. She is the baby and the only girl. She gets away with a lot.

Finances and Insurance Coverage

Healthcare costs are a key concern for most people with blood cancer. Many patients don't have health insurance, and for others, coverage is limited. If you have health insurance, it's essential that you know what your plan covers and how to maintain your benefits. 

 

Where to Start

You and your family will need to decide how to pay for treatment while managing household finances. You probably also need to consider additional indirect costs, such as lost time from work, childcare and travel expenses.

Side Effects

The main goal of treatment for myeloma is to get rid of myeloma cells. The term side effect is used to describe how treatment affects healthy cells. Patients react to treatments in different ways. Sometimes there are very mild side effects. Other side effects may be serious and last a long time.

Myeloma patients should talk with their doctors about side effects before they begin any type of treatment. There are drugs and other therapies can prevent or manage many side effects.

Treatment of Acute Promyelocytic Leukemia

Acute promyelocytic leukemia (APL) is a unique subtype of acute myeloid leukemia (AML). APL cells have a very specific abnormality that involves chromosomes 15 and 17, leading to the formation of an abnormal fusion gene called PML/RARα. This mutated gene causes many of the features of the disease. APL accounts for about 10-15 percent of all adult AML cases diagnosed each year. 

Blastic Plasmacytoid Dendritic Cell Neoplasm

For personalized disease and treatment information, or to learn about clinical trials, contact one of The Leukemia & Lymphoma Society's (LLS's) Information Specialists at (800) 955-4572. Background

Blastic plasmacytoid dendritic cell neoplasm (BPDCN) was previously known as natural killer (NK) cell leukemia/lymphoma. As understanding of the biology and origin of this malignancy has improved, the World Health Organization (WHO) established the term blastic plasmacytoid dendritic cell neoplasm (BPDCN) in 2008.

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.

Lauren

To be healed by the miracles of modern medicine and prayer was the most profound experience of my life. It is difficult to articulate the gratitude my family and I feel in our hearts for the people who made it so. There is no scenario where I would be here today, writing this account, without the research made possible by The Leukemia & Lymphoma Society (LLS).

Chloe

At the age of 13, I became the youngest stem cell donor at Johns Hopkins Hospital. At 15, I am a Student Visionary of the Year in the 2024 Leukemia and Lymphoma Society (LLS) campaign. LLS has become an integral part of my life over the past two years. In the spring of 2022, the peaceful life of our family was shattered by my mom’s diagnosis of acute myeloid leukemia (AML). Learning that a stem cell transplant was the only cure, I volunteered to donate my bone marrow to her.

Todd

I was diagnosed at age 33 as a result of an unrelated blood test, very young, I was told. Fluorescence in situ hybridization (FISH) showed low risk. My local oncologist sent me to a regional teaching hospital to get a second opinion, and that opinion was, "If I had to pick a cancer, this would be it." Terrible start!

Signs and Symptoms

A person who has signs or symptoms that suggest the possibility of non-Hodgkin lymphoma (NHL) is usually referred to a blood cancer specialist called a hematologist-oncologist. The doctor will order additional tests and a tissue biopsy to make a diagnosis. The signs and symptoms of NHL are also associated with a number of other, less serious diseases.

The most common early sign of NHL is painless swelling of one or more lymph node(s). 

Diarrhea and Constipation

Diarrhea and constipation are common side effects of cancer treatment. The severity of diarrhea or constipation varies among patients and depends on the type of treatment you receive. Sometimes side effects improve as you adjust to treatment. Most side effects go away when treatment ends.

Tell your healthcare team if you are experiencing new or worsening diarrhea or constipation. Do not take over-the-counter medications without talking to your doctor.

Diarrhea 

Follow these tips to manage diarrhea: