Resource Guide for Patients and Their Loved Ones
This resource guide is intended for patients diagnosed with Hodgkin’s lymphoma (HL), their family members, caregivers, and healthcare professionals. It addresses the most frequently encountered issues related to the disease, its diagnosis, and the treatments involved. Hodgkin’s lymphoma belongs to the group of blood cancers
Our goal is to offer as much information as we can about the newest treatment options, possible side effects of medications, and the unique challenges of living with Hodgkin lymphoma. Please be aware that this guide is purely informational and does not replace professional medical advice. Patients are strongly encouraged to consult their primary healthcare provider for any questions or concerns.
Table of Contents
Real-life Experience from Debora, a Hodgkin’s Lymphoma Survivor
“I was in my fifth year of medical school when I started feeling unwell. I was always tired, experienced recurrent infections, and developed strange allergies. My symptoms were treated individually, and my doctor attributed all of it to ‘stress and overwork from studying’.
My disease was silently progressing during this time. I’m grateful to my instructors who noticed my unusual cough and my lips turning bluish. I recall needing to rest several times while climbing to the fourth floor of my house. It must be bronchitis, I assumed.
When I was rushed to the hospital due to shortness of breath, everything happened so fast that I hardly had time to grasp how the diagnosis was made and how I ended up spending six months in the hospital. I had to take a leave from school. It was a terrifying time, and I couldn’t see any light at the end of the tunnel.
Perhaps my inherent optimism was what kept me going. There were moments when I wished I wasn’t a medical student because my knowledge made me perceive things differently, but it also proved to be helpful. I knew that there were medications available, and as one of my professors once said to me, ‘if the medicines are there, all you need is to endure the treatment’. I clung to this belief, focusing on the goal of recovery and shutting out any ‘what if’ thoughts.
In hindsight, it feels as if it were a dream or a story of someone else. The brain has a way of filtering out the painful memories. My mother often compared me to a soldier: I knew when to put on a brave face, and I knew how to comfort not only myself but also my loved ones. I quickly made peace with my disease. Who was my biggest ally? It was weightlifting.
As a girl who loves sport, I’ve learned lessons of patience, focus, courage, and critical assessment. These lessons helped me ground myself in reality, just like when I stand with weights in my hands. Yes, there were moments of vulnerability, tears, and the haunting question – why me? But giving up was not an option.
I yearned for my life, even for my plans back at the gym. I kept myself busy with knitting in the evenings, making items for my loved ones, reading books. Life, after all, is a canvas, and it’s up to us to paint our days with vibrant colors. My family and friends were my pillars of strength.
My journey with the disease taught me to savor each day, and to cherish myself more. I have emerged stronger, bolder, and more open-minded. Fear of change no longer holds me back, and I’ve made peace with my illness. It’s important to embrace the changes life throws at you, understanding that nothing happens without a reason.
In my own eyes, I haven’t changed much. I just carry on with life. I wouldn’t say I’ve had an epiphany, but perhaps I’m quicker to make decisions now. I steer clear of things I dislike and I’ve become more honest with myself and others. Interestingly enough, I’ve become a stronger athlete. I returned to my sport with the objective of becoming stronger and now, I can bask in the glow of my victories.
The human body truly is miraculous. I resumed my medical studies, returned to my sport, and even began coaching others. Engaging in sports keeps negative thoughts at bay, strengthens me, and offers relaxation. It’s a source of immense joy for me.
My profession gives me immense satisfaction. The ability to help others has always been a dream of mine and it’s fulfilling to see it come true.
When I’m feeling down, I remind myself not to merely wait for the storm to pass. Instead, I need to learn how to dance in the rain.”
Overcoming Adversity: Charles’ Inspirational Battle with Hodgkin’s Lymphoma [H2]
“Hodgkin’s lymphoma made its presence known with a fever when I was just 16. After my treatment involving chemotherapy and radiation therapy, it seemed like the disease was defeated, but a few months later it came back. This led to more chemotherapy and two autologous bone marrow transplants. Two years post-diagnosis, I was finally strong enough to leave the hospital, having recovered from the second stem cell transplant.
Despite the challenging circumstances, I was always eager to spend as little time as possible in the hospital. I would persistently ask the doctors if I could go home for a bit, even when it seemed ill-advised. During my treatment, I lost touch with most of my friends, but my family was a solid pillar of support. Even strangers or distant acquaintances – friends of the family – lent a hand.
For the longest time, I held onto Winston Churchill’s quote – “If you’re going through hell, keep going.” To me, it meant that when faced with hardships, you should keep moving forward, as that’s the only way to escape the harsh times.
My perception of health – food, exercise, sleep, emotional well-being – underwent a transformation. I became more conscious, but didn’t blindly follow the newest diets or workout regimes. I was constantly experimenting to find what suited me best.
There was a sense of maximalism, perhaps a subconscious attempt to reclaim my lost teenage years. While this served as a potent driving force, I occasionally went overboard, ending up in a less than ideal situation.
I dabbled in a variety of new pursuits, one of them being skydiving. During my sponsorship period, I had regular medical check-ups with a doctor, who would always inquire if I had made the jump yet. For a long time, my response was “not yet”, until one day, circumstances aligned such that I could proudly tell “Yes, I did!”
Being an adventurous soul, I constantly seek new activities to try with my friends. Mountain biking, diving into philosophical, psychological and fiction books, travelling, personal growth, rock climbing, camping and nature walks – these are some of my favorite pastimes.
During and after my illness, I’ve spent a great deal of time contemplating my life, my perspectives, and my attitudes. The mental and physical ramifications of the illness still linger. For a long time, I viewed these remnants negatively, convinced that my mind and body had been permanently scarred by the treatment.
Only recently have I begun to truly appreciate what I still possess. My life, in essence, is as rich and fulfilling as that of many of my friends, relatives, and colleagues: I enjoy an active social life, a plethora of hobbies and interests, engaging in sports, and extensive travels. I’m certain many people I interact with would be completely unaware that I once battled a serious illness.
After my treatment concluded, I could not have imagined that the next 10 years would be as rewarding as they have turned out to be. Had I known, I would have barred any doubts from influencing my actions, and likely would have accomplished even more. Therefore, I hope others can learn from my journey and begin to live a full life as soon as possible!”
Understanding the Beginnings of Hodgkin’s Lymphoma
In this section, we’ll explore the biology of the disease – delving into why and how lymphoma develops, and its impact on the human body.
Hodgkin’s Lymphoma (HL) is a type of cancer that targets the blood cells known as lymphocytes. Lymphocytes, along with other immune cells, make up the human immune system, a defense mechanism against diseases caused by bacteria, viruses, parasites, and other harmful microorganisms.
You can find lymphocytes in the blood, within the lymphatic system – a network made up of lymph, lymph nodes, and lymph vessels spread throughout the body – and also in the bone marrow, where they are produced. They can be found in the spleen, thymus, tonsils, and in small quantities in the mucus membranes (intestinal, respiratory, genital tract).
How Does Cancer Develop?
The human body consists of various cells, each with distinct functions. These cells grow, operate, and die in an extremely organized manner. The lifespan of a cell is generally well-regulated. When cells grow old, get damaged, or no longer serve their purpose, a process known as programmed cell death – or apoptosis – takes place.
Sometimes, the genetic material (DNA) of a cell undergoes mutation, disrupting the cell’s programmed death mechanism. This allows cells to multiply and grow indefinitely, making them virtually immortal. These altered cells are typically identified and eliminated by immune cells. However, there are instances where the immune system is overwhelmed and fails to deal with these altered cells, eventually leading to cancer.
Cancer develops when these abnormal, altered cells begin to multiply without control, disturbing the apoptosis mechanisms, leading to an accumulation of cells, and forming a tumor (or neoplasm), which impedes the function of normal cells.
Most cancers are named after the cells or organs where they originate. For instance, kidney or pancreatic cancer. Cancers involving lymphocytes are termed lymphoma or lymphocytic leukaemia, depending on where the primary source of abnormal cells is – in the lymph nodes or in the blood and bone marrow.
Understanding Blood Cells
Erythrocytes or red blood cells make up roughly half of the volume of blood in our bodies. Haemoglobin within these cells is responsible for transporting oxygen from the lungs to the rest of the body’s tissues. Conversely, it carries carbon dioxide, a waste product from the tissues, back to the lungs where it is expelled when we breathe out.
Platelets, or thrombocytes, are the smallest blood cells and they are vital for stopping bleeding. For instance, when a blood vessel is cut and damage occurs, bleeding begins. The platelets adhere to the damaged area and clog it up, stopping the bleeding.
Later on, a permanent clot forms and the blood vessel is repaired. Platelets also release a growth factor that stimulates the healing of wounds and the reconstruction of the blood vessel wall.
White Blood Cells or Leukocytes Come in Several Types:
• Neutrophils and monocytes, also known as phagocytes (cells that eat), are responsible for combating infections. They are capable of moving from the bloodstream into tissues to destroy bacteria and/or fungi causing infections by “swallowing” and breaking down the pathogens.
• Eosinophils and basophils react to substances that cause allergies (allergens) and parasites.
• Lymphocytes can be found in lymph nodes, spleen, lymph vessels, tonsils, and blood.
They Come in Three Types:
o T lymphocytes: these assist B lymphocytes in producing antibodies against microorganisms and battling infection.
o B lymphocytes: they produce antibodies against bacteria, viruses, or other pathogens.
o Natural killer (NK) cells: they fight against viruses and tumor cells independently, without needing help from other cells or proteins (antibodies).
The creation of blood occurs in the bone marrow, a spongy tissue in the central cavity of bones where blood cells develop and mature, a process known as hematopoiesis. In children, nearly all bones are filled with universal red bone marrow and hematopoiesis is very active.
As the body matures, more of the bone marrow turns into fat tissue and ceases to be active, turning into what is still referred to as yellow bone marrow due to its color. In adults, red bone marrow is found in the spine, ribs, sternum, shoulders, hips, and skull bones.
Origin of Blood Cells
A small fraction of bone marrow cells, known as haematopoietic stem cells (HSCs), possess the capacity to regenerate and differentiate into all types of blood cells. As these cells reach full maturation, they move from the bone marrow into the bloodstream.
A healthy individual has enough stem cells to continually produce a normal quantity of blood cells. A very small portion of these stem cells, undetectable through ordinary blood tests, can enter the bloodstream. They can be collected through special methods and, if necessary, be transplanted from a donor to a patient.
The Lymphatic System
The lymphatic system plays a crucial role in the human immune system. It aids in combating a variety of bacteria and other infectious agents, such as viruses, fungi, and parasites, as well as diseases caused by these agents.
The lymphatic system also has the ability to identify and eliminate cells that are either outdated and non-functional or have undergone changes, including cancerous cells.
The Lymphatic System is Composed Of:
• Lymphatic vessels, which are thin canals spread throughout the body.
• Lymph, a clear fluid containing numerous lymphocytes, flows through these vessels.
• Lymph nodes are small, round or oval structures positioned along the lymph vessels. Healthy lymphocytes in the lymph nodes interact with various microbes and infectious agents, stimulating the immune system to respond when they are recognized.
• The thymus gland, bone marrow, spleen, and tonsils.
• Accumulations of mucosal lymphocytes found in various bodily tracts (intestinal, respiratory, genital, urinary).
The size of the lymph nodes varies with the activity levels in the lymphatic system. When the body is exposed to large amounts of harmful substances, such as viruses or bacteria, the lymph nodes may enlarge.
This is a normal response to infection. Lymph nodes can also become enlarged due to other diseases, such as rheumatoid arthritis, which involve active immune or inflammatory processes. Less frequently, enlarged lymph nodes are associated with cancer.
The Immune System
The immune system is the group of specialized cells, tissues, and organs within the human body whose primary function is to identify and eliminate foreign or altered cells and microorganisms that could cause disease.
The Immune System Provides Two Types of Immunity:
• Innate (natural) immunity includes normal body barriers, such as the skin and mucous membranes, substances in the blood, and specific cells that attack and kill foreign microorganisms. The cells associated with innate immunity are neutrophils, macrophages, eosinophils, and basophils.
• Acquired (adaptive) immunity involves the thymus, spleen, tonsils, bone marrow, blood, and lymphatic system. The principal cells of acquired immunity are B and T lymphocytes. These cells have the ability to kill or inactivate foreign microorganisms and retain memory of them for a long time. Upon repeated exposure to the same microorganism, the immune response becomes much stronger and quicker.
Lymphoma Definition
Lymphoma is a type of cancer originating from the abnormal proliferation of lymphocytes within the lymph nodes or other tissues of the lymphatic system. There are two primary categories of lymphomas – Hodgkin’s lymphoma (HL) and non-Hodgkin’s lymphoma.
Within these classifications, there exist numerous subtypes of lymphomas, each identified according to the cell of origin, observable genetic anomalies, progression, metastasis, and treatment responses. Unlike other tumors, the prognosis for lymphoma is determined not only by its stage but also by its type and other unique characteristics.
Hodgkin’s Lymphoma
Hodgkin’s lymphoma, previously known as Hodgkin’s disease, is a lymphoma originating from abnormal lymphocytes.
The condition was named after the British physician Thomas Hodgkin who first described it in 1832. It most commonly affects young adults between the ages of 20 and 34 but can also affect children and the elderly.
In Europe, approximately 14,000 patients are diagnosed with Hodgkin’s lymphoma each year. In the United States, approximately 8,500 people are diagnosed with Hodgkin’s lymphoma each year
Hodgkin’s Lymphoma Etiology
HL begins to develop when abnormal (cancerous) B lymphocytes, known as Reed-Sternberg (RS) cells, multiply and grow without regulation. In many patients, RS cells or related cell variants are discovered in the lymph nodes.
Upon microscopic examination of HL, individual RS cells are typically found surrounded by numerous inflammatory immune cells like T lymphocytes, eosinophils, and neutrophils. For this reason, HL was initially thought to be an infectious disease rather than an oncological one.
However, the presence of RS cells does not necessarily indicate lymphoma, as these cells can also be found in other conditions. If a microscopic examination of a patient’s lymphoid tissue biopsy reveals RS cells surrounded by inflammatory cells with CD30 antigens on the surface (determined through immunohistochemistry), the diagnosis of HL is confirmed.
HL typically begins in the lymph nodes, and an enlargement of the lymph nodes (usually located in the neck, above or below the collarbone, in the armpits, or the groin) may be the first sign of the disease. The abnormal cells might also spread through the lymphatic vessels to other lymph nodes (abdominal, mediastinal, etc.), organs, or tissues.
Differences Between Hodgkin’s Lymphoma and Other Lymphomas
The presence of RS cells in the body of patients is a distinguishing factor of Hodgkin’s lymphoma, as they are not found in other types of lymphoma.
Additionally, HL usually progresses to adjacent groups of lymph nodes, whereas other lymphomas tend to spread unpredictably.
Hodgkin’s lymphoma also differs from other lymphomas in terms of the affected age group – HL is more frequently diagnosed in younger individuals and generally has a more favorable prognosis.
Hodgkin’s Lymphoma Classification
Hodgkin’s lymphoma is categorized based on its microscopic appearance and the presence of specific markers identified through immunohistochemical tests. The primary types include classical Hodgkin’s lymphoma (cHL) and nodular lymphocyte-dominant Hodgkin’s lymphoma (NLPHL).
Classical Hodgkin’s Lymphoma (cHL)
Classical HL accounts for about 95% of all HL diagnoses. It’s subdivided into four primary subtypes, all of which have similar treatment approaches.
Subtypes of Classical Hodgkin‘s Lymphoma:
| Name | Characteristics |
| Nodular sclerosis | It accounts for about 70% of all HL cases. It usually starts in the lymph nodes of the neck or chest. They form nodules. Younger people and females are more often affected. |
| Mixed cellularity | It accounts for about 20-25% of all HL cases. Lymph node biopsies show RS cells abundantly surrounded by other inflammatory immune cells. The disease is more common in older people, children under 10 years of age and people whose immune system is suppressed for one reason or another (immunodeficiency state). |
| Lymphocyte-rich | It accounts for about 5 percent of all cases of HL. The characteristic microscopic picture is one of many normal lymphocytes and few RS cells. More common in men. |
| Lymphocyte depletion | It accounts for less than 1% of all HL cases. Biopsies show a high number of RS cells and very few lymphocytes. Older people are more likely to be affected. |
Nodular Lymphocyte-dominant Hodgkin’s Lymphoma (NLPHL)
NLPHL is diagnosed in approximately 5% of all HL patients. Its defining feature is the presence of Reed-Sternberg-like cells known as lymphocyte-predominant (LP) cells in biopsy samples.
These cells express different surface antigens than those in classical HL, primarily CD20, while they don’t express CD30 and CD15 antigens. This type of HL typically begins in the lymph nodes of the neck, groin, and axillae and tends to have an indolent (slowly progressive) course.
Risk Factors for Hodgkin’s Lymphoma
The precise reason why some individuals develop HL while others do not remains unknown. There are a few risk factors that may increase your likelihood of developing the disease. Nonetheless, HL can also occur in people who do not exhibit any of these risk factors.
Known Risk Factors for HL:
| Risk factor | Characteristics |
| Age | People in the age group 15-40 years and over 55 years are more likely to be affected. |
| Heredity | First-degree relatives (parents, children, siblings) have a higher risk of developing HL if a relative has the disease. |
| Gender | Men have a slightly higher risk. |
| Immunodeficiency states | Both congenital immunodeficiencies and acquired immunodeficiency conditions increase the risk of developing HL. |
| Viral infections | People infected with Ebstein-Barr virus (EBV) or human immunodeficiency virus (HIV) have a higher risk of developing HL. |
Hodgkin’s lymphoma is not contagious; it cannot be contracted from injuries or from someone with the disease. Despite the known risk factors, it remains a relatively rare condition, and there are no universally conducted preventive screening tests for it.
Symptoms and Signs of Hodgkin’s Lymphoma
The symptoms and signs experienced by Hodgkin’s Lymphoma (HL) patients often vary, with many patients experiencing no obvious symptoms, leading to accidental discovery during routine health check-ups. The most common symptoms and signs of HL were listed in the table below, but it’s important to remember that these symptoms are not unique to HL and can be common in various other diseases.
Symptoms and Signs of Hodgkin’s Lymphoma:
| Symptoms and Signs | Possible Causes |
| Enlarged lymph nodes in the neck, collarbones, armpits, groin, elbows | Lymph node enlargement can also be due to infection or altered lymphocyte deposits in the nodes |
| “B symptoms”: fever (temperature rises to or above 38 degrees), weight loss, night sweats | Increased levels of inflammatory mediators in the blood due to immune cell activation |
| Itching | Increased levels of inflammatory mediators or viral reactivation |
| Coughing, shortness of breath, chest tightness | Lymphoma in the lymph nodes of the chest can press on the bronchial tubes, making it difficult to breathe |
| Fatigue | Low red blood cell count (anaemia) |
| Hypersensitivity to alcohol or lymph node pain after alcohol consumption | Not known |
If you observe an enlarged lymph node with no other infection symptoms (like a runny nose or sore throat), and the lymph node does not return to its normal size or is larger than 1 cm in diameter or is increasing in size over a month, it’s essential to consult a doctor.
Also, if you experience any of the unpleasant symptoms listed in the table, discuss these with your doctor to ascertain the cause. Importantly, the presence of these symptoms does not necessarily mean you have lymphoma.
If your doctor suspects a disease based on the symptoms and signs, they may prescribe further detailed tests, including additional blood tests, lymph node biopsies, chest X-rays, CT scans, and bone marrow or cardiopulmonary function tests.
How is Hodgkin‘s Lymphoma Diagnosed
A lymph node biopsy is crucial to confirm whether a patient has Hodgkin’s lymphoma. This procedure involves removing a piece of tissue for microscopic examination. The biopsy results are fundamental for diagnosis and determining the treatment approach. Always feel free to ask your doctor about any concerns or questions you may have regarding diagnostic procedures and what to expect.
A diagnosis of HL can only be confirmed after evaluating the results of the available tests. The diagnostic procedures aim to establish whether the disease is present, and their purpose, risks, and benefits should be clearly communicated by the doctor.
Types of Biopsies
There are several types of biopsies. The method chosen by your doctor will depend on your individual case.
- Open (surgical) biopsy: This method is typically used when the disease is first detected. It often involves removing and examining the entire lymph node, as a larger sample enables more accurate evaluation of cellular changes. During an open biopsy, the surgeon removes all or a large part of the lymph node under local or general anaesthesia.
- Core biopsy: This method is used when the lymph node is located deep in the chest wall or is inaccessible through open biopsy, or when there are contraindications to surgery. Core biopsy involves inserting a thick needle into the suspected lymph node to remove a small tissue sample. Sometimes, the sample obtained this way may be too small for accurate examination, necessitating a repeat biopsy. This procedure is often combined with an imaging test like ultrasound or CT scan due to the precision required.
- Fine needle aspiration biopsy: This method involves inserting a fine needle into the suspected lymph node to collect tissue cells. Fine needle aspiration is used to assess treatment efficacy, but it’s not suitable for confirming a diagnosis as abnormal cells may not be included in the sample. The biopsy specimen is examined in detail by a pathologist, who then provides a report to your treating oncologist or hematologist. In cases where the tissue sample tested is too small, leading to a potentially false negative result, the doctor may recommend a second biopsy or additional tests to clarify the diagnosis.
Immunophenotyping
This method of testing looks for cell-specific antigens or markers. Different cells exhibit different antigens on their surfaces. For instance, normal lymphocytes and HL cells have distinct antigens on their surfaces. Identifying these antigens can help determine the types of cells present in the test material.
Immunophenotyping methods:
| Immunohistochemical method | Flow cytometry |
| Thin sections of the biopsy or tissue cells are treated with known antibodies. These antibodies recognise antigens on the surface of the cells and stain them with a particular color. The pathologist looks under the microscope and sees collections of cells stained with one and other colors (depending on whether they are normal or abnormal). | Cells from the biopsy sample are treated with known antibodies. These antibodies bind to antigens on the surface of the cells and give the cells a particular color. The intensity of the colour is measured by a special device called a flow cytometer. This method is most often used when a liquid material such as blood or bone marrow is being tested. |
It’s Important for Every Patient to Understand:
• A biopsy is the only test that can confirm the diagnosis.
• Some tests can yield false negative results – the results may appear normal despite the person having HL.
• Certain test results may show abnormalities, but this doesn’t necessarily mean the person has HL.
• Sometimes, the results of imaging studies can be challenging to interpret, necessitating further tests.
• It can often be necessary to repeat a biopsy, especially when monitoring the disease’s progression.
• It’s crucial to discuss the test results and any questions you may have with your doctor.
Additional Tests Before Treatment
After a diagnosis of HL, patients may undergo a series of additional tests including laboratory blood tests, imaging tests, cardiac and pulmonary function tests, and bone marrow tests.
These tests aim to determine the extent of the disease and assess how it has impacted the body’s systems and functions – a process known as staging. Additional tests are necessary for determining the most suitable treatment.
Stages of Hodgkin‘s Lymphoma
The stage of a disease describes how far the disease has spread in the body. Determining the stage of the disease is crucial for selecting the most effective and targeted treatment.
The most commonly used system for staging lymphoma is the Ann Arbor staging system. However, since 2014, it has been modified and is now referred to as the Lugano classification. The stage of HL is typically determined by a positron emission tomography/computed tomography (PET/CT) or a CT scan.
Stages of Disease and Their Description:
| Disease stage | Description |
| I | Lymphoma in only one lymph node or group of lymph nodes. |
| II | Lymphoma in two or more groups of lymph nodes, but on one side of the diaphragm, just above or below the diaphragm. |
| III | Lymphoma in two or more groups of lymph nodes located on either side of the diaphragm. |
| IV | Lymphoma that has spread to the bone marrow or other non-lymphoid (extra-nodal) tissues. |
In summary, based on imaging studies, symptoms, and certain laboratory blood parameters, HL can be classified as early, intermediate, or advanced stage.
Stage I and II refer to localized disease (except for “bulky” disease where the tumor size is >10 cm). In the absence of other risk factors, they are classified as early stage. Stage I and II with identifiable risk factors fall into the intermediate category.
Stages III and IV represent advanced disease and are classified in the late category. Even in advanced stages, effective treatment can be provided.
The Stage May Be Followed by a Letter Indicating the Presence of Certain Symptoms:
‘A’ indicates that the patient doesn’t have ‘B symptoms’;
‘B’ indicates that the patient has one or more “B symptoms”;
‘E’ indicates extranodal lymphoma that originated outside the lymph nodes;
‘X’ indicates that at least one lymph node is >10 cm in size.
Treatment of Hodgkin‘s Lymphoma
Being diagnosed with cancer is an overwhelming experience for both the patient and their loved ones. It is entirely normal to experience worry, confusion, and even anger upon receiving such news.
This section aims to provide insight into the various treatment methods, their goals, outcomes, and what you can expect during treatment.
The First Steps After a Cancer Diagnosis:
• Ensure you take care of your physical health by maintaining a balanced diet, exercising, and observing a strict regimen of sleep and rest.
• Maintain your mental wellbeing. Share your feelings of anxiety and fear with your close ones and do not hesitate to communicate.
• Make it a point to learn about your illness and its treatment.
• Join a community of people living with hematological diseases such as the Blood Association. This gives you an opportunity to share your own experiences and learn from others’.
Seeing Prognosis:
A prognosis refers to the likelihood of recovery or living the best possible quality of life given a certain illness. It’s based on collective experience treating patients with the same disease.
However, each patient is unique, and therefore the prognosis of a disease depends on multiple factors, making it challenging to predict the exact course of treatment and anticipated survival time.
Prognostic Factors:
These are the characteristics and indicators that help establish a patient’s prognosis. Positive prognostic factors suggest a better outcome and longer life expectancy, while negative prognostic factors indicate the contrary.
Patients with classical HL are grouped into prognostic categories based on these prognostic factors and the stage of the disease.
Risk Factors Associated with a Worse Prognosis (Based on the criteria established by the German Hodgkin Study Group [GHSG]):
| Risk factors |
| Bulky disease (mediastinum equal to/larger than 1/3 of the largest chest dimension/tumor >10 cm). |
| Erythrocyte sedimentation rate (ESR) equal to or greater than 30 mm/h in the presence of “B symptoms” or equal to or greater than 50 mm/h in the absence of “B symptoms”. |
| 3 or more lymph node regions are affected. |
| Extra-nodal lesion. |
| “B symptoms”: fever, night sweats, weight loss. |
Choosing the Most Appropriate Treatment:
The haematologist will select the most suitable individual treatment strategy for each patient. This decision is based on:
• Type of Hodgkin lymphoma,
• Stage of the disease, tumor location, and size,
• Risk factors,
• Symptoms that reduce quality of life (especially weight loss, night sweats, fever),
• Blood test results,
• Patient’s general health, age, and ability,
• Patient’s wishes and goals,
• Previous treatments for the disease,
• Ongoing clinical trials.
The doctor must discuss the risks, benefits, and side effects of the treatment with the patient. It’s perfectly normal to have many questions. Note them down and discuss them with your treating specialist.
Furthermore, don’t hesitate to seek a second opinion if you’re uncertain or have doubts about the prescribed treatment. Discuss with your doctor about the possibility of consulting another specialist. This does not imply mistrust; instead, it shows your commitment to securing the best possible treatment plan.
Communication with the Treating Staff:
Transparent and sincere communication and collaboration between the patient and the medical team (including doctors, nurses, social workers, psychologists) are crucial to achieving the best possible treatment outcome.
Patients should not hesitate to ask questions and express their doubts. Meanwhile, doctors should provide as much information as possible to alleviate these doubts.
Tips on Communicating with Your Medical Team:
• Maintain a health diary: record your overall wellbeing, any new, worsening or improving symptoms, and jot down any questions that come to mind.
• If you have a pressing question or concern, don’t hesitate to reach out to your doctor over the phone.
• During your doctor’s visit, refer to your health diary and make sure to ask any pending questions.
• Keep a list of medications, vitamins, or supplements you’re currently taking and discuss them with your doctor during your visit.
• If you’re worried about forgetting the details of your doctor’s consultation due to anxiety or prefer not to be alone, bring a loved one along to your appointments.
• Discuss your preferred method of communication with your doctor—whether it’s over the phone, email, or during visits.
• Explore options for psychological support with your doctor.
• Make sure you clearly understand your treatment plan and next steps.
• Feel free to write down or highlight information during your consultation.
• Don’t shy away from discussing topics not directly related to your illness, such as sexual problems or financial difficulties.
Therapeutic Strategies for Hodgkin’s Lymphoma
Different types, stages, and risk factors of HL necessitate different treatment strategies. Even the same type of lymphoma can be caused by different alterations at the cellular genetic level, making treatment highly individualized—what works for one patient may not work for another.
Main Treatment Methods:
- Medications:
- Chemotherapy: This involves drugs that halt the growth of all cells.
- Immunotherapy: This involves regulating immune cells.
- Targeted Therapy: It works by focusing on specific molecules or pathways that cancer cells use to grow, divide, and survive.
- Radiation Therapy: This treatment uses radiation energy to destroy tumor cells.
- Hematopoietic Stem Cell Transplantation (combined with high-dose chemotherapy).
- Alternative Treatments: Sodium dichloroacetate (DCA), fenbendazole (fenben), sodium phenylbutyrate (4PBA) and 2-deoxy-glucose (2DG) may be utilized individually or in combination with the aforementioned treatment strategies to target altered cancer metabolism. These agents can help destroy cancer cells, weaken tumors, and maintain remission following successful treatment, or when other therapies have proven ineffective.
Chemotherapy Approach
This treatment method halts or inhibits the growth of cancer cells. Chemotherapy drugs typically target all rapidly dividing cells, hindering their growth and division. Since normal adult body cells don’t divide as rapidly as cancer cells, they are less affected by the drugs. However, hematopoietic cells, hair follicle cells, and intestinal lining cells are all relatively fast-proliferating cells, hence are particularly sensitive to chemotherapy drugs. Side effects like hair loss and diarrhea are largely associated with the damage to these cells.
In treating HL, most patients receive more than one drug, referred to as treatment protocols or drug combinations. These drugs are not taken continuously, but often for a certain number of days, followed by a period of rest (cycles).
Intravenous drugs are most commonly used for treating HL since they enter the bloodstream more easily and quickly than oral medications. The duration of treatment is determined by the doctor. Typically, patients receive chemotherapy drugs in a hospital and can go home following the infusion.
Conversely, the previously stated alternative treatments are administered at home following hospital discharge, in accordance with established protocols.
Immune-Based Treatments
This treatment method aims to activate the human immune system to kill cancer cells. Although human immune cells are naturally capable of recognizing and destroying abnormal cells, cancer cells often manage to “hide” from immune cells and multiply uncontrollably. Immunotherapy helps immune cells to recognize and eliminate lymphoma cells.
Three main groups of immunotherapeutic drugs exist: monoclonal antibodies, antibody-drug conjugates, and immune checkpoint inhibitors.
- Monoclonal Antibodies: Specialized cells in the human body, known as plasma cells, produce protein molecules called antibodies.
Antibodies help fight a wide range of infectious agents by specifically recognizing and binding to foreign antigens, facilitating the destruction of the foreign material.
Monoclonal antibodies are lab-altered molecules that function slightly differently from natural antibodies. They target a specific molecule in a cell that is unique to one type of cell. When the antibodies bind to these molecules, certain mechanisms are activated and the malignant cell is destroyed.
Once injected into the human bloodstream, monoclonal antibodies bind to lymphoma cells, inhibiting their growth and aiding other immune cells in identifying and destroying lymphoma cells.
Before beginning monoclonal antibody treatment, all patients are tested for hepatitis and other viruses since this treatment method can potentially reactivate certain viruses. The most common side effects of immunotherapeutic drugs relate to a weakened immune system, which could increase the risk of infections.
Allergic reactions at the infusion site, such as itching and redness, are also common with these drugs. Occasionally, generalized allergic reactions may occur.
Antihistamines and steroidal drugs may be administered before the infusion to minimize the risk of adverse reactions (premedication).
Monoclonal antibodies are administered via intravenous infusion, necessitating a hospital visit for the medication. This treatment is often combined with other methods.
- Antibody-Drug Conjugates (ADCs): These are a type of drug complex where a molecule of a chemotherapy drug is attached to a monoclonal antibody. These drugs bind specifically to lymphoma cells through specific antibodies, meaning the chemotherapy effect is targeted to certain cells without harming others.
- Immune Checkpoint Inhibitors: Normal cells in the body contain proteins called immune checkpoint proteins – CTLA-4 and PD-1/PD-L1. They exist to prevent unnecessary immune responses, which happen when the immune system becomes overactive and immune cells mistake their own cells for foreign ones. Some lymphoma cells can trigger these proteins to deceive the immune system and avoid destruction.
Immune checkpoint inhibitors are monoclonal antibodies that block the activation of these proteins, preventing the immune system from being deactivated and enabling immune cells to function effectively against the lymphoma cells.
Radiotherapy (Radiation Therapy)
This treatment method utilizes the effect of high-energy radiation on tumor cells. The cells exposed to radiotherapy are destroyed, reducing the total mass and volume of the tumor. However, due to its long-lasting side effects and adverse reactions, the use of radiotherapy has been declining.
Radiotherapy treatment is administered and overseen by a oncologist or radiotherapist. The hematologist and the radiologist decide together on the size of the body area to be irradiated and the dose of radiation. This depends on the size of the tumor, its spread, and other parameters.
Hematopoietic Stem Cell Transplantation
This treatment is only available to patients who are in good or very good general condition. Both autologous (patient’s own cells) and allogeneic (cells from a donor) transplantation can be used to treat lymphoma.
The primary goal of autologous transplantation is to enable high-dose chemotherapy. Extremely high doses of chemotherapy drugs effectively destroy lymphoma cells but also irreversibly damage normal cells, such as hematopoietic stem cells. This disruption causes a drop in all blood components. Hematopoietic cell transplantation allows a patient’s blood production to be restored following high-dose chemotherapy.
The main effect of allogeneic transplantation is not only the use of high-dose chemotherapy but also the immune response of the donor cells against the lymphoma cells—this is known as the graft-versus-lymphoma effect. Lymphoma cells have adapted to “hide” from the patient’s immune cells, but donor cells can recognize the lymphoma cells and destroy them.
However, the same effect can in some instances occur against normal patient cells, leading to donor cells starting to destroy various tissues, such as those in the intestines, skin, and liver. This is called graft-versus-host disease (GVHD) and is managed with immunosuppressive drugs.
Sometimes, a reduced-intensity transplant regimen is used, in which the patient receives lower doses of chemotherapy, and the primary intended effect is the graft-versus-tumor effect.
Alternative Therapies for Treating Hodgkin’s Lymphoma
Prominent among emerging alternative therapy agents are DCA, fenbendazole, sodium phenylbutyrate, 2DG and others.
These agents may be used alone or in combination with standard treatments with the goal of disrupting the metabolic pathways exploited by cancer cells.
Compounds that stop or slow these alternative pathways may ultimately block tumor growth, increase cancer cell death, and maintain remission once the cancer has been cured.
Moreover, they also provide an additional resource for patients who, after all the heroic attempts of standard care, see their disease return or progress.
The effectiveness of treatment in Hodgkin’s Lymphoma (HL) is typically described using several terms that provide insight into how the disease is responding to therapy.
Key Terms Include:
| Concept | Description |
| Complete remission | The term is used when a patient’s lymphoma is completely eradicated after treatment. This does not indicate a cure, as the disease can recur, but it does mean that there are no symptoms and it cannot be detected by various tests. |
| Partial remission | The term describes a positive response to treatment, a reduction of the lymphoma to at least half its original size. |
| Minimal response | There is a response to treatment, but it is marginal, and the lymphoma does not decrease significantly. |
| Stable disease | The disease remained stable throughout the treatment – it did not get worse, but it did not get better. |
| Progressive disease | During treatment, the disease has progressed – the lymphoma has grown, spread or new symptoms have appeared. |
| First-line therapy | The first-line treatment strategy that is best suited to the patient’s disease course, prevalence and other factors. |
| Refractory (resistant) disease | Lymphoma that doesn’t respond to treatment, or that progresses immediately after stopping treatment. |
| Relapse | Relapse after temporary remission. |
- Complete Remission (CR): This indicates that all signs of the cancer have disappeared following treatment. However, this does not necessarily mean the cancer is cured.
- Partial Remission (PR): This refers to a significant reduction in the signs and symptoms of cancer following treatment, though some evidence of the disease remains.
- Stable Disease (SD): This indicates that the cancer has not grown or shrunk following treatment.
- Progressive Disease (PD): This shows that the cancer has grown or spread despite treatment.
- Relapse or Recurrence: This refers to the return of cancer after a period of improvement or after achieving remission.
- Refractory: This term is used when cancer does not respond to treatment.
- Cure: This means that the patient has no signs of cancer after treatment and the chance of recurrence is very small.
For classical HL, treatments involve chemotherapy, immunotherapy, radiation therapy, hematopoietic stem cell transplantation and alternative therapy. The exact regimen depends on the subtype of HL (classical or nodular lymphocyte-predominant), the disease stage, and the risk category (early, intermediate, or advanced).
| Treatment protocol | Medicines |
| ABVD | Doxorubicin, Bleomycin, Vinblastine, Dacarbazine |
| AVD | Doxorubicin, Vinblastine, Dacarbazine |
| BEACOPP | Etoposide, Doxorubicin, Cyclophosphamide, Vincristine, Bleomycin, Procarbazine, Prednisolone |
For early-stage classical HL, the ABVD chemotherapy regimen (Adriamycin, Bleomycin, Vinblastine, and Dacarbazine) is commonly used. After 2 cycles of ABVD, a PET/CT scan is performed to evaluate the response to treatment. Depending on the results, additional chemotherapy or radiation therapy may be recommended.
In cases of intermediate-stage classical HL, the ABVD regimen is also typically used, but with a higher number of cycles—typically 4. A PET/CT scan follows these cycles, and if a positive response is observed, radiation therapy to the areas affected by lymphoma is given.
Advanced-stage classical HL often necessitates a more aggressive treatment approach, usually involving the BEACOPP chemotherapy regimen (Bleomycin, Etoposide, Adriamycin, Cyclophosphamide, Oncovin, Procarbazine, and Prednisone).
Two cycles of BEACOPP are usually given, followed by a PET/CT scan. The results of the scan then determine the course of further treatment, which may involve an additional 2 or 4 cycles.
If the first-line therapy does not result in complete remission or if there’s a relapse, the patient is given second-line therapy. This often involves a new combination of chemotherapy drugs, followed by high-dose chemotherapy with autologous hematopoietic stem cell transplantation.
Brentuximab vedotin (Adcetris) and nivolumab (Opdivo) and pembrolizumab (Keytruda)are targeted therapies that are used to treat Hodgkin’s lymphoma, especially in situations where the disease is refractory or has relapsed after other treatments.
These drugs work by specifically targeting and binding to certain proteins or markers on cancer cells, which can either inhibit their growth or trigger their destruction.
Brentuximab vedotin, an antibody-drug conjugate, consists of two parts: a monoclonal antibody (brentuximab) that specifically targets CD30, a protein found on the surface of Reed-Sternberg cells, and a chemotherapy drug (vedotin). After the antibody portion of the drug binds to CD30 on the lymphoma cells, the chemotherapy portion is then able to enter the cancer cell and kill it. This targeted approach allows for the direct delivery of chemotherapy to the cancer cells while reducing damage to normal cells.
Brentuximab vedotin is usually given as an intravenous infusion every two or three weeks. Side effects can include immune system suppression, disruption of blood cell production, peripheral neuropathy, fatigue, nausea, respiratory infections, and gastrointestinal issues.
Nivolumab and pembrolizumab, on the other hand, are types of immunotherapy known as immune checkpoint inhibitors. They work by targeting the PD-1 protein, which is a type of checkpoint that helps keep the body’s immune responses in check. By blocking PD-1, these drugs help to boost the immune response against cancer cells.
Nivolumab and pembrolizumab are also administered by intravenous infusion, with nivolumab typically given every two or three weeks and pembrolizumab every three weeks. Common side effects can include fatigue, immune system overactivation, respiratory infections, fever, gastrointestinal issues, skin reactions, and muscle aches.
These targeted therapies have changed the landscape of treatment for Hodgkin’s lymphoma, offering new hope for patients with disease that is resistant to or has relapsed after other treatments.
However, as with all cancer treatments, they can also cause significant side effects and their use needs to be carefully monitored by healthcare professionals.
Addressing the Nodular Dominant Lymphocyte HL (NDLHL)
NDLHL, a type of lymphoma, stands apart from the usual HL as it features “popcorn” cells instead of Reed-Sternberg cells. Its treatment is unique compared to that of classical HL, and the approach primarily hinges on the disease stage.
A peculiar variety of Hodgkin lymphoma known as Nodular lymphocyte-predominant Hodgkin lymphoma (NLPHL) is relatively rare, making up only around 5% of all cases.
Its distinctive traits and generally slow-progressing nature often call for a different treatment course from that of the classical Hodgkin‘s lymphoma.
“Active surveillance” or “watchful waiting” is a common strategy for managing patients with NLPHL who are either symptomless or dealing with slow-progressing disease. Instead of active intervention, this approach involves closely monitoring patients through regular appointments, imaging, and lab tests. If there’s any worsening of the disease or if symptoms appear, that’s when treatment would kick in.
Rituximab is a monoclonal antibody designed to target the CD20 antigen found on B lymphocytes. This treatment has proven effective in battling a range of B-cell lymphomas and chronic lymphocytic leukemia.
Given that NLPHL springs from B-cells and typically expresses CD20, Rituximab has shown its efficacy in treating this disease, often alongside chemotherapy. That said, Rituximab monotherapy is not typically the go-to choice for NLPHL treatment.
In scenarios where the disease defies treatment or in case there’s a relapse post initial successful response, Rituximab might be used as a maintenance therapy for a stretch of up to 2 years. This implies that Rituximab is administered routinely to extend the remission period.
It’s crucial to acknowledge that handling NLPHL can be intricate and must be tailored to suit each patient’s unique situation. Variables like the patient’s overall health, the disease stage, and the presence or absence of symptoms can sway the treatment choice.
Consequently, the decision-making process often involves thorough conversations between the patient and their healthcare team to balance the prospective benefits and risks of different treatment alternatives.
Responding to Adverse Reactions from Treatment
In this section, we delve into the most frequently seen adverse reactions induced by medications and other treatments, and provide guidance on how to handle them. As we’ve discussed, classical chemotherapy drugs aren’t selective—they affect not just cancer cells but also regular cells in our bodies.
They especially impact rapidly multiplying cells like hair, mucous membranes, digestive tract, and bone marrow. The influence on these cells is determined by the drug concentration, duration of administration, and the individual’s health condition.
Adverse reactions to drugs are grouped according to when they occur and how long they last.
| Side effects | Description | Examples |
| Short-term | Appears with medication, but goes away quickly when you stop taking it | Diarrhoea, vomiting |
| Long-term | Occurs during treatment with medication and lasts for a long time | Fatigue, neuropathic pain |
| Late | Occurs after some time (months, years) | Osteoporosis, infertility |
Adverse Reactions from Chemotherapy Drugs
• Taste Alterations: Patients often report changes in their taste, experiencing a metallic aftertaste, or in some cases, complete loss of taste. These issues usually resolve once chemotherapy is halted. Dietary modifications, such as consuming food at room temperature or colder, can sometimes help.
• Cognitive Disturbances: This refers to issues with memory and concentration. Though usually temporary, these problems can cause significant discomfort.
• Constipation.
• Diminished Blood Cell Production: Chemotherapy drugs can weaken the bone marrow, leading to a decrease in blood cell production, a condition known as myelosuppression. To prevent this from happening, patients undergo frequent blood tests, and their blood cell counts are closely monitored.
Conditions Induced by Myelosuppression:
| Condition | Description |
| Anemia | Decrease in the number of red blood cells (erythrocytes) in the blood. Anemia is manifested by extreme tiredness, shortness of breath. Rarely, however, anemia is treated with transfusions of red blood cells. |
| Leukopenia | Decrease in leukocytes or white blood cells. This leads to increased susceptibility to infections. |
| Lymphopenia | Decrease in lymphocytes (a type of leukocyte). This also increases susceptibility to infections. |
| Neutropenia | A decrease in neutrophils (a type of leukocyte). This makes the patient very susceptible to infections, and fever, chills and night sweats can be confusing. During chemotherapy, doctors closely monitor the patient’s absolute neutrophil count (ANC). If the patient has more than 500 cells per microliter, the risk of contracting various infections increases significantly. In this case, the course of chemotherapy may be delayed. Sometimes patients are given prophylactic treatment with antibiotics, while others are given filgrastim to stimulate neutrophil production. Filgrastim may cause bone pain. This pain is relieved by non-steroidal anti-inflammatory drugs. Filgrastim or other neutrophil growth promoters should not be given in combination with bleomycin, as the combination may cause lung damage. |
| Thrombocytopenia | Decreased platelet count. This results in longer bleeding times and slower wound healing after injury. |
• Diarrhoea: Diarrhoea generally ranges from mild to moderate. The key action is to stay adequately hydrated. If drinking feels like a chore, take small, frequent sips of water. It’s also wise to stay clear of dairy and fibre-rich products.
• Fatigue: This is the most common fallout of chemotherapy, brought on by several factors like loss of appetite or anaemia. It’s crucial to aim for regular exercise, adequate sleep, and self-care. Fatigue typically recedes post chemotherapy.
• Hair Loss: Certain drugs lead to hair loss, usually occurring 2 to 6 weeks post the initial chemotherapy cycle. The good news is, hair grows back once the treatment concludes.
• Heart Damage (Cardiotoxicity): This relatively rare side effect appears with specific drugs like doxorubicin. The risk of heart damage can be lessened by lengthening the gap between chemotherapy cycles or curtailing the treatment.
Patients with cardiovascular risk factors are more susceptible to chemotherapy-induced cardiotoxicity. After evaluating all risk factors, the doctor may advise additional cardiologist consultations or tests.
• Infection Prone: Chemotherapy impairs the patient’s immune system, making them more prone to various infections. If you suddenly develop a fever, it’s vital to inform your doctor as this could indicate an infection.
To mitigate the risk of infections, antibiotics, antivirals, or antifungals may be prescribed. Recommended precautions include frequent and thorough handwashing, avoiding large gatherings in flu season, staying away from raw food, avoiding sharing your bed with pets, and discussing potential vaccinations with your doctor.
• Loss of Appetite: Common in lymphoma, loss of appetite is frequently a side effect of chemotherapy. Patients often feel full shortly after they begin eating, leading to inadequate food intake, weight loss, or other signs of malnutrition. Your doctor might suggest a special diet plan or medication to help regain appetite.
• Lung Damage: Certain chemotherapy drugs, particularly Bleomycin, can harm lung cells. If you’re prescribed this drug and experience coughing, breathlessness, or chest pain during your treatment, be sure to inform your doctor who may suggest additional tests or treatments.
• Mouth Sores: Certain drugs may cause sores in the mouth lining—a condition known as mucositis. These sores arise due to increased susceptibility to various viral infections. Your doctor might prescribe an antiviral medication. Moreover, good oral care is crucial: regular cleaning of your teeth and tongue with a soft toothbrush and avoiding citrus fruits and spicy foods.
• Nausea or Vomiting: This common side effect usually begins on the first day of chemotherapy and disappears after the treatment ends. Your doctor will prescribe anti-nausea medications (ondansetron, metoclopramide) to manage this symptom. However, preparedness is key. Prior to chemotherapy, avoid dairy, overly spicy, fatty, or hot foods, and opt for smaller portions of easily digestible foods. If you do vomit, remember to hydrate frequently.
• Peripheral Neuropathy: Some medications might harm nerves, resulting in symptoms like pain, numbness, sensitivity to touch, tingling, and muscle weakness in the hands or feet. It’s essential to inform your doctor about these sensations as soon as they occur.
Treatments for peripheral neuropathy can include anti-seizure medications (pregabalin, gabapentin), local anaesthetic patches, opioids, or antidepressants (duloxetine). Additional helpful strategies could include massages, comfortable footwear, and warm socks.
Raynaud’s phenomenon is a unique type of neuropathy that can occur in patients treated with Bleomycin. It’s marked by impaired blood flow in small vessels, causing frostbite-like symptoms, tingling, numbness, and pain in the fingers, nose, and earlobes. Calcium channel blockers are usually employed to treat Raynaud’s phenomenon.
• Sexual Dysfunction: The illness often curbs sexual desire, stemming from the disease itself, fear of altered appearance, or even depression. Normally, sexual desire bounces back after chemotherapy. It’s important to discuss this issue with your doctor, especially if it’s impacting your quality of life.
• Infertility: The impact of chemotherapy drugs or radiotherapy on healthy cells can impair the production or function of germ cells, leading to infertility. The risk varies depending on factors like drug dosage, the number of chemotherapy cycles, the patient’s age, and more. Your doctor can suggest several methods to preserve fertility, such as freezing reproductive cells before beginning treatment. If you plan to have children in the future, ensure you discuss this with your doctor prior to treatment.
Despite these risks, many patients retain their reproductive abilities and conceive post-disease. However, birth control precautions are recommended during treatment and for several months afterwards.
Lymphoma treatment can be aggressive and trigger a variety of other reactions not mentioned here, such as skin rashes, muscle weakness, and issues with balance and coordination. Talk with your doctor about any symptoms troubling you; there may be solutions to alleviate these discomforts.
Can I Skip a Chemotherapy Cycle Because of Adverse Reactions?
Patients may face severe adverse reactions that threaten their health. In such cases, the doctor might postpone the chemotherapy cycle or alter the treatment approach. However, research indicates that any modification in chemotherapy’s dose or duration can influence a patient’s overall survival or hinder achieving remission.
Adverse Reactions to Corticosteroids
Corticosteroids (steroid drugs) are commonly used in conjunction with chemotherapy drugs. They serve several important functions, such as enhancing lymphoma treatment efficacy, reducing inflammation, easing nausea, and boosting appetite. Unfortunately, like all medicines, corticosteroids (like dexamethasone and prednisolone) can also cause adverse reactions.
These include insomnia, increased appetite, elevated blood pressure, fluid retention, and weight gain. Notable mood swings, irritability, anger, and depression can also occur. In rare cases, a person might become disoriented, losing track of time and their surroundings, and even failing to recognise familiar faces. Prolonged use of corticosteroids can lead to cataracts, osteoporosis, and visible changes in physical appearance.
It is important to inform your relatives about possible behavioural changes so that they can promptly report to the doctor if they notice any adverse shifts.
Adverse Reactions to Radiotherapy
Radiotherapy can induce diverse adverse reactions that may occur during treatment and continue over time. Side effects are more prevalent when radiotherapy is combined with chemotherapy. All adverse reactions, their impacts, durations, and timings depend on the body site treated with radiotherapy, along with the dose and duration of treatment.
Short-term Reactions:
• Dry Mouth (Xerostomia): This includes reduced saliva production, making it hard to swallow food and potentially damaging teeth and gums.
• Fatigue.
• Appetite Loss and Taste Alterations.
• Nausea.
• Skin Reactions: Changes can occur in the skin area treated with radiotherapy, such as redness, dryness, sores, and swelling. These typically resolve post-treatment, though dryness or discolouration might persist longer. During treatment, it’s crucial to protect yourself from direct sunlight by wearing covering clothes and sunscreen.
• Throat Irritation: Radiation therapy in the neck area can cause throat irritation and dryness, as well as difficulty swallowing. It’s important to maintain a healthy diet, favouring meals with soft textures and pure food.
Long-term Reactions:
• Cardiovascular Damage: Radiotherapy to the chest can affect the cardiovascular system. This can damage major arteries (especially in the neck and coronary arteries, thus increasing the risk of stroke or heart attack), heart valves, and can cause pericarditis (inflammation of the tissue surrounding the heart). It also raises the risk of developing cardiomyopathy (heart muscle damage). Patients treated with radiotherapy are advised to consult with a cardiologist every five years and undergo necessary tests.
• Secondary Tumours: The risk of developing secondary tumors after radiotherapy depends on the body site treated and the dose of treatment. For instance, younger women (below 30) who have received chest radiotherapy have a slightly heightened risk of developing breast cancer compared to other women of the same age group.
Nowadays, radiotherapy is optimised to deliver the lowest possible dose to the smallest possible body surface area to minimise the likelihood of secondary tumors developing post-radiotherapy treatment.
Emotional Support
Coping with lymphoma involves managing not only physical health but also mental and emotional wellbeing. The diagnosis and treatment of lymphoma can understandably lead to a range of emotions including fear, anxiety, and depression. It’s crucial to acknowledge these feelings rather than ignore them.
Support from friends and family can be invaluable during this time. You might also want to consider joining a support group for people with lymphoma. Sharing your experiences and hearing how others cope can be very therapeutic.
Professional psychological support or counselling can also be beneficial. Counsellors or psychologists who have experience with cancer patients can provide effective strategies to manage stress and anxiety. Mindfulness and relaxation techniques can also be useful tools to cope with emotional distress.
Communication with your Medical Team
Maintaining open lines of communication with your medical team is also important. If you have any concerns about your condition, treatments, or side effects, don’t hesitate to ask your healthcare providers. They can provide you with accurate information and reassurances, helping to alleviate fears and uncertainties.
Preserving Your Interests
While lymphoma and its treatment can be a significant part of your life, they don’t define you as a person. Maintaining your interests and hobbies can provide a great emotional outlet and give you a sense of normalcy and control. Whether it’s reading, painting, gardening, or anything else that brings you joy, keep engaging in activities that you love and that contribute to your overall sense of wellbeing.
Incorporating Rest and Relaxation
Balancing activity with rest is essential. While regular exercise can have numerous health benefits, so does giving your body a chance to rest and recover, especially when dealing with fatigue associated with lymphoma and its treatment. Be kind to yourself and remember that it’s okay to have periods of downtime.
Overall, dealing with lymphoma can be challenging, but remember you’re not alone. Reach out to the supportive people in your life, your medical team, and consider engaging with a support community. Maintain a balanced lifestyle, open communication, and continue doing what you love. You are more than your illness, and there are many strategies and resources to help you navigate through this journey.
Mind-Body Techniques
In addition to psychological support, various mind-body techniques can be helpful in managing the emotional impact of a lymphoma diagnosis and treatment. These techniques involve using the power of the mind to influence physical health and wellbeing.
• Meditation: Meditation can help reduce stress, anxiety, and depression, enhance emotional well-being, and improve quality of life. It involves focusing your mind and eliminating the stream of thoughts that may be crowding your mind and causing stress.
• Relaxation techniques: Techniques such as progressive muscle relaxation, deep breathing, and visualization can help you relax, reduce stress, and manage symptoms of lymphoma and side effects of treatment.
• Yoga and Tai Chi: These practices combine physical postures, breathing exercises, and meditation to help reduce stress, improve flexibility and balance, boost mood, and improve sleep.
• Music or art therapy: Engaging in creative outlets can be a therapeutic way to express feelings, reduce stress, and improve emotional wellbeing.
• Biofeedback: This technique involves learning to control body functions, such as heart rate, to reduce stress and promote relaxation.
• Hypnosis: Hypnotherapy, conducted by a trained therapist, can help reduce anxiety, manage pain and nausea, and improve sleep.
It’s important to talk to your healthcare provider before starting any mind-body practice, especially if you have any health conditions.
Some practices, such as certain yoga poses, may not be safe for people with particular health conditions. A healthcare provider can help you understand the potential benefits and risks and recommend suitable practices based on your individual needs.
Remember, there is no right or wrong way to cope with lymphoma. What matters is finding ways that work best for you in managing the disease and maintaining your quality of life. You’re not alone on this journey, and there are many resources available to support you along the way.
Participating in a Clinical Trial
Clinical trials are conducted in a series of steps, called phases. Each phase has a different purpose and helps researchers answer different questions.
If you are considering participating in a clinical trial, it’s essential to understand the phase of the study and what it means. This understanding can help set expectations about what the trial is designed to achieve and what your participation could involve.
| Phase | Objectives | Participants |
| I | • Determine a safe dose of the medicine or medicines. • Determine a regimen for taking the medicine. • Identify early side effects. | 6 – 30 patients with different cancer diagnoses. |
| II | • To determine whether a medicine is effective in treating a particular disease. • Investigate adverse events in more detail. | 2 groups of >100 patients with the same disease. |
| III | • Compare the new treatment with existing standard treatments. • A detailed look at how the medicine works and what side effects it causes. | From a few hundred to a few thousand patients suffering from the same disease. |
| IV | • Examine the long-term effects of treatment on the disease and the patient’s health. | From a few hundred to a few thousand patients suffering from the same disease. |
Benefits and Risks of Participating in a Clinical Trial
There are potential benefits and risks to participating in a clinical trial.
Potential benefits include:
• Access to new treatments not yet available to the public.
• Contributing to medical research that may help future patients.
• Receiving regular and thorough care from a research team that includes doctors and other health professionals.
Potential risks include:
• The new treatments may not be betteSr than, or even as good as, standard treatment.
• There could be side effects or adverse reactions to the treatment that were not anticipated or are worse than those of standard treatment.
• Participation in a clinical trial could require more time and attention, including more trips to the study site, more treatments, hospital stays, or complex treatment regimens.
If you are considering participating in a clinical trial, talk to your healthcare provider or a member of the study team about the potential benefits and risks in your specific case. It’s also important to know that participation in a clinical trial is entirely voluntary, and you have the right to withdraw at any time.
