Newly Diagnosed Leukemia Patients: What To Expect

Introduction

A. Understanding leukemia

Leukemia is a blood cancer, characterized by the rapid growth of abnormal blood cells, usually white blood cells in the bone marrow. In our body, white blood cells form in the bone marrow and travel through the body to fight infection. But in leukemia, there are too many abnormal white blood cells, and they outnumber the body’s other important blood cells:

• Red blood cells that carry oxygen throughout the body (oxygenation)
• Platelets that help blood clot

This imbalance hampers the normal functioning of organs and compromises the efficiency of red blood cells and platelets in performing their respective roles. Furthermore, the weakened immune response of leukemia cells impairs their ability to effectively combat infections.^1,2

B. Importance of knowing what to expect

Understanding what to expect as a newly diagnosed leukemia patient is crucial for several reasons:^1,2,3

• Emotional Preparation
• Treatment Decision-Making
• Physical and Symptom Management
• Lifestyle Adjustments
• Support Network

Diagnosis and disease understanding

Diagnostic tests

Diagnostic tests may include:^1,4

Physical exam: Your doctor will ask about your symptoms and feel for swollen lymph nodes and an enlarged spleen or liver, inspect your gums for bleeding and swelling, and look for a skin rash characterized by red, purple, or brown discoloration.

Complete blood count (CBC): This blood test helps your doctor determine if your red blood cells, white blood cells, and platelets are at normal levels. If you have leukemia, your white blood cell count may be higher than normal.

Blood cell examination: Your doctor may take additional blood samples to check for markers that indicate the presence of leukemia. Flow cytometry and peripheral blood smear are additional tests your healthcare provider may advise.

Bone marrow biopsy: Your doctor may recommend a procedure to remove a sample of bone marrow from your hip bone. A long thin needle inserted into your bone marrow draws out fluid during the procedure. The fluid sample is sent to a laboratory for specialized tests on leukemia cells, which help determine appropriate treatment options based on identified characteristics.

Imaging and other tests: Your doctor may advise a chest X-ray, CT scan, or magnetic resonance imaging (MRI) scan if symptoms indicate leukemia has affected your bones, organs, or tissue. 

Lumbar puncture (spinal tap): Your doctor may test a sample of spinal fluid to check if leukemia has spread to the spinal fluid surrounding your brain and spinal cord.

Types and subtypes

It is categorized into four main types and various subtypes, based on how fast the disease worsens and the origin of leukemia cells from either myeloid or lymphoid cells.^1,4

The first type of classification is by how fast leukemia progresses:

Acute leukemia: In acute leukemia, the presence of immature blood cells (blasts) characterizes the abnormality in the blood cells. They can't carry out their normal functions, and they multiply rapidly, so the disease worsens quickly. It requires aggressive, timely treatment.

Chronic leukemia: Chronic leukemias manifest as either excessive or insufficient cell production. It involves more-mature blood cells. These blood cells replicate slowly and can function normally for a period of time. Some chronic leukemias show no initial symptoms and can be undetected for years.

The second type of classification is by specific white blood cell type involved:

Lymphocytic leukemia: It affects the lymphocytes, which form lymphoid or lymphatic tissue. Lymphatic tissue makes up your immune system.

Myelogenous leukemia: This leukemia type affects myeloid cells, which are responsible for generating red blood cells, white blood cells, and platelets.

Types of leukemia

There are four main types of leukemia:

• Acute lymphocytic leukemia (ALL) is the most common type of leukemia in children, teens, and young adults up to age 39 but also occurs in adults of any age
• Acute myelogenous leukemia (AML) is the most common type of acute leukemia in adults, more prevalent in older adults but also occurs in children
• Chronic lymphocytic leukemia (CLL) is the most common chronic leukemia in adults, primarily affecting individuals over 65, with symptoms possibly delayed for years
• Chronic myelogenous leukemia (CML) is more common in older adults (65+) but can occur in any age group; rare in children, with possible delayed onset of symptoms

Disease characteristics and prognosis

Leukemia symptoms vary, depending on the type. Some of the common signs and symptoms include:^1,4

• Fever or chills
• Persistent fatigue, weakness
• Frequent infections
• Losing weight without trying
• Shortness of breath
• Pale skin
• Swollen lymph nodes, enlarged liver or spleen
• Easy bleeding or bruising
• Recurrent nosebleeds
• Tiny red spots on your skin 
• Excessive sweating, especially at night
• Bone pain or tenderness

According to the Surveillance, Epidemiology, and End Results (SEER) database, there are 59,610 estimated new cases of leukemia in 2023, accounting for 3% of all new cancer cases, making leukemia the 10th most common cancer in the United States.^5,6

Leukemia’s exact cause is unknown. The disease may have a hereditary component. Risk factors include:^1,4

• Previous cancer treatment
• Genetic disorders
• Chemical exposure
• Smoking
• Family history of leukemia

Generally, it’s difficult to predict the prognosis for leukemia because everyone’s experience is different. However, outcomes depend on a variety of factors.¹

Ultimately, your doctor is the best resource for understanding how your cancer cells affect your unique prognosis. 

Treatment options and planning

Many cancer treatments exist, with ongoing research. Some are "local" treatments like surgery and radiation therapy, which are used to treat a specific tumor or area of the body. Drug treatments (such as chemotherapy, targeted therapy) are often called "systemic" treatments because they can affect the entire body.⁷ 

Standard treatments

1. Chemotherapy ^{1 4}

It is the most common treatment for leukemia. This drug treatment uses chemicals to kill leukemia cells. Depending on the type of leukemia, you may receive a single drug or a combination of drugs. 

1. Radiation therapy^1,4

This treatment uses strong energy beams or X-rays to damage leukemia cells or stops their growth. In this treatment, a machine directs radiation to the specific area in your body where the cancer cells are or distributes radiation over your whole body.

1. Targeted therapy^1,4

This treatment uses drugs designed to target specific areas of a leukemia cell (like a protein or gene) that are causing them to overtake normal blood cells. It may prevent leukemia cells from growing, stop their blood flow, or directly eliminate them.

Personalized treatment plans

1. Discussing options with the healthcare team

There are different types of treatments for blood cancer.⁸

Your doctor will suggest treatment based on expert guidelines and research on effective treatments. They will look at:

• the type of blood cancer 
• the results of your blood tests 
• general health
• what treatments are available, how well they work, and any risks or side effects
• You’ll be monitored throughout the treatment and it’s common for treatment plans to change 

1. Second opinions and clinical trials

Cancer clinical trials are carefully conducted research studies by doctors aimed at improving cancer care and treatment, focusing on assessing treatment safety and determining optimal dosage. A treatment that's proven safe and effective in a cancer clinical trial may be approved by the U.S. Food and Drug Administration (FDA) based on its effectiveness and fewer side effects than the current standard treatment. Clinical trials are suitable for individuals of various types and ages, depending on the specific purpose and phase of the trial. The eligibility for clinical trials depends on many factors, especially your disease type, and stage; your age, gender, and race; and other treatments you've used.⁹

The purpose of blood cancer clinical trials is to:

• Improve treatment options
• Increase survival
• Improve quality of life
• Advances in blood cancer treatment depend on clinical trials through innovative therapies and combinations

Managing treatment side effects

Treatments like chemotherapy, targeted therapy, radiation, and steroids often have side effects, although many treatments are well tolerated.  Each patient is different so the side effects that occur and how severe they are may be different as well.¹⁰

Common side effects

Some of the common side effects include:^11,12

• Anxiety and Depression
• Cancer-Related Fatigue
• Chemo brain
• Dental and Oral Complications
• Diarrhea and Constipation
• Hair Loss
• Heart, Kidneys, Liver, and Lung Function
• Infections
• Iron Overload
• Low Blood Counts
• Nausea and Vomiting

Coping strategies

Most of the patients experience treatment side effects, but significant progress has been made in managing them effectively. If you are experiencing any of the side effects or symptoms, please make sure to let your doctor know so they can track your progress and treat.¹²

Supportive care

Supportive care or Palliative care is a special approach to caring for patients with serious illnesses, such as cancer. It mainly focuses on improving the quality of life by helping patients and caregivers manage the symptoms of a serious illness and the side effects of treatment. 

It is suitable for anyone, regardless of age or stage of illness, whenever they have symptoms that need to be controlled.¹³

Psychological and emotional support

Coping with diagnosis

A diagnosis of cancer impacts many parts of your life – whether you have just found out you have cancer, are getting treated, or have finished your treatment.  It not only affects the person with cancer but also their loved ones. It shows the impact on various aspects of life, including the physical, social, emotional, and spiritual aspects. These combined effects are known as the psychosocial impact of cancer.^14,15

Receiving a cancer diagnosis can be life-altering, initially overwhelming, but understanding what to anticipate can provide a sense of reassurance.

Support groups and counseling

Socializing with people you choose to be around allow you to engage in conversations and discussions about topics that make you feel at ease and comfortable. You can do this by joining a support group or One-on-one/group counseling.¹⁵

Support groups bring together individuals who are facing similar situations. Even though each person’s experience is unique, it can help to hear from others who have firsthand experience with blood cancer and can provide valuable support and insights in navigating your own journey. Talking about your thoughts and feelings to someone who is a good listener can make them feel better. These groups can be beneficial in helping individuals cope with their emotions and manage the side effects of treatment. They can also offer valuable insights and information that can assist members in making decisions. Additionally, these groups can address family-related issues and provide guidance on practical matters such as work and financial concerns.

Counseling which involves talking with a trained professional about your worries and concerns to try and make sense of it all can be of support in many ways. 

Self-care and stress management

A cancer diagnosis can affect your physical, mental,, and emotional health hence it is necessary to prioritize your health and well-being with some focus on yourself.¹⁶

Here are some helpful ways to accomplish that:

• Prioritize self-care by taking breaks, slowing down, and creating moments of peaceful solitude.
• Do calming activities that you enjoy
• Ask for help and accept help when it is offered
• Get more sleep
• Maintain a healthy balanced diet
• Exercise
• Spend time with loved ones

Practical considerations

Communicating with family and friends

Communicating with friends, and families and maintaining healthy relationships with those you know are caring and supportive. It may be hard to find the time but even if it’s a phone call or video chat, spending time with people who matter most to you is very important.¹⁶

Work and financial management

Working during cancer treatment depend on the type and stage of cancer, your overall health, and the kind of work you do. Talk to your doctor about your plans to work or not work. They advise you depending on your ability to work.¹⁷

Legal and practical considerations

Cancer patients have the same rights as everyone else in the workplace. They should be treated fairly and given equal opportunities, regardless of whether they disclose their cancer diagnosis. Your abilities and qualifications should be the basis for hiring, promotions, and how you are treated at work.  There are federal laws, such as the Rehabilitation Act and the Americans with Disabilities Act (ADA), that protect many people facing job issues related to cancer. Additionally, the Family and Medical Leave Act (FMLA) may provide benefits. Life after treatment

Follow-up care and surveillance

Regular follow-up care is crucial after achieving remission or controlling the disease. Your doctor will monitor your health, watch for signs of relapse, and discuss long-term effects or late effects with you. Physical exams, blood tests, and screenings for cancer recurrence may be recommended at specific intervals, with longer periods between visits as time progresses.¹⁸

Long-term Effects and Survivorship

Long-term side effects can occur after cancer treatment, and it's essential to discuss any concerns about specific late effects with your doctor.¹⁹

Emotional and psychological aspects

After completing cancer treatment, it's common to initially feel a sense of elation, but it may not be a lasting feeling. Healing both physically and emotionally takes time, and it's important not to rush the process. Cancer survivors often discover a "new normal" and find that their priorities and perspectives have shifted, enabling them to appreciate ordinary moments and feel better equipped to face life's challenges.^14,15,20

Supportive organizations and resources

Leukemia and Lymphoma Society (LLS)

The Leukemia & Lymphoma Society (LLS) is dedicated to offering information, resources, and support to individuals impacted by blood cancers. LLS provides a comprehensive directory of national and international resources to support blood cancer patients, families, and caregivers. These resources encompass a wide range of services, including financial assistance, support and counseling, transportation assistance, and more, addressing various cancer-related needs.²¹

Other support organizations

Leukaemia support organizations and sites are:

• Blood Cancer UK
• Leukemia Care
• Leukemia cancer society
• B Positive

General support organizations are:

• Young Lives vs Cancer
• Teenage Cancer Trust
• American Cancer Society
• Macmillan Cancer Support
• National Cancer Institute

Maintaining a healthy lifestyle

Nutrition and exercise: 

Consuming nutritious foods and engaging in regular physical activity can have positive effects on both your physical and emotional well-being, but it's crucial to consult with your doctor before making any dietary changes before initiating a new exercise regimen.¹⁶

Immunizations and infection prevention

Cancer patients undergoing chemotherapy have a higher risk of infections due to weakened immune systems caused by the disease and certain cancer treatments. Low white blood cell counts increase the susceptibility to infections, which can be severe and difficult to treat, potentially leading to fatal outcomes. To prevent or manage infections, healthcare teams may prescribe antibiotics, and growth factors to improve white cell counts, and may also consider stopping or delaying treatment to allow blood cell counts to recover.²²

Managing fatigue and well-being

Cancer-related fatigue (CRF) is a persistent and overwhelming exhaustion experienced by patients with blood cancers, often lasting beyond treatment, and it is essential for patients to communicate with their healthcare team to address and manage this symptom through treatment and lifestyle modifications.²³

Creating a supportive network

Family and caregiver involvement

Support from friends and family is crucial for both individuals with cancer and their caregivers, with various support programs available such as counseling, support groups, and online communities that provide a sense of belonging and helpful insights from shared experiences.²⁴

Building connections with other patients

The Leukemia & Lymphoma Society's (LLS's) support groups bring together individuals affected by blood cancers, fostering mutual support and providing a platform to openly address anxieties and concerns, ultimately strengthening familial bonds and enhancing coping mechanisms in the presence of cancer.²⁴

Online communities and social support

The online leukemia support community, offers a free platform for members to access information, resources, and personal connections, enabling patients and their families/caregivers to engage in discussion threads, share information, and find support on various topics related to leukemia.²⁵

Summary

"Newly Diagnosed Leukemia Patients: What To Expect" provides a comprehensive overview of the journey faced by individuals recently diagnosed with leukemia. The article covers key aspects such as the diagnostic process, available treatment options, potential side effects, support resources, and strategies for coping with the emotional and practical challenges of leukemia. It aims to equip patients and their loved ones with valuable information and guidance during this critical phase.