Leukemia stories symptoms. Leukemia Stories: Early Signs and Symptoms Shared by MyLeukemiaTeam Members
What were the first signs and symptoms of leukemia experienced by members of MyLeukemiaTeam? Discover common early indicators such as fatigue, pain, and swollen lymph nodes.
Fatigue: A Common Early Sign of Leukemia
Debilitating fatigue is one of the most commonly discussed topics on MyLeukemiaTeam, with many members reporting experiencing this symptom long before receiving a leukemia diagnosis. “I was sleeping 20 hours per day,” one member wrote. “I could hardly get out of bed.” Another shared a similar sentiment: “Pain and fatigue are what originally sent me to the doctor before my diagnosis. Has anyone else experienced worsening pain and extreme fatigue before treatment?”
Persistent fatigue and weakness are among the most common early signs of leukemia. Symptoms may at first seem related to other chronic (ongoing) or infectious diseases, so people with leukemia — even their health care providers — may overlook this blood cancer as a possible cause. A likely reason for fatigue is that blood cancer can directly cause anemia, which leads to less oxygen moving through the body and feelings of mental and physical exhaustion.
Pain: A Widespread Early Symptom
Many MyLeukemiaTeam members reported feeling pain before receiving their leukemia diagnosis. “I had extreme headaches, bone pain from my hips to my feet, and a rash all over my body,” one member said. Another shared, “I had a lot of muscular pain at night.”
According to the Leukemia & Lymphoma Society, bone and joint pain often occur because leukemia cells build up in the bone marrow. On average, 1 in 4 people with leukemia experience bone pain during the early stages of the disease. Given the many shared experiences with pain, one member offered their hypothesis: “Chronic lymphocytic leukemia (CLL) seems to magnify any kind of preexisting condition. So, if you had chronic pain before your CLL diagnosis, it’s safe to say that it will become magnified.”
Swollen Lymph Nodes: An Immune System Response
One MyLeukemiaTeam member shared, “Swollen lymph nodes were my first main issues with acute myeloid leukemia.” At its most severe, this symptom can even lead to others, such as insomnia. “I had a terrible time sleeping with swollen glands near my throat,” another member noted.
Approximately 20 percent of people living with leukemia experience swollen lymph nodes before receiving a diagnosis. This symptom can also occur when fighting an infection or after being given a vaccine. Swollen lymph nodes under the armpit, by the groin, or on the neck show that your immune system is working hard. But in the case of leukemia, the glands often stay swollen past the usual two weeks, are not painful to the touch, and grow over time. They represent your body’s production of cancerous blood cells.
Rash and Other Skin Changes
A variety of symptoms, including rash, may precede a leukemia diagnosis. One MyLeukemaTeam member described having an all-over rash, along with headaches and bone pain, before being diagnosed.
Skin changes can be an early indicator of leukemia, as the abnormal blood cells produced in leukemia can sometimes infiltrate the skin. Rashes, discoloration, and other skin manifestations may appear before more systemic symptoms develop.
Difficulty Sleeping
Swollen lymph nodes can contribute to sleep disturbances for some people with leukemia. “I had a terrible time sleeping with swollen glands near my throat,” one MyLeukemiaTeam member shared.
Insomnia and other sleep problems may arise as a result of leukemia-related symptoms like pain, discomfort, or anxiety. Managing these underlying issues can help improve sleep quality.
Unique Symptoms Depend on Leukemia Type and Stage
It’s important to note that the specific symptoms experienced by people with leukemia can vary widely, depending on the type and stage of the disease. While fatigue, pain, swollen lymph nodes, and skin changes are common early indicators, each person’s experience may be unique.
Discussing any persistent or concerning symptoms with a healthcare provider is crucial, as early detection and diagnosis can greatly impact treatment outcomes for leukemia. By sharing their stories, MyLeukemiaTeam members hope to raise awareness and help others recognize potential signs of this blood cancer.
Seeking Medical Attention for Concerning Symptoms
If you are experiencing persistent fatigue, unexplained pain, swollen lymph nodes, or other concerning symptoms, it is important to speak with your healthcare provider. While these signs do not necessarily mean you have leukemia, it is important to get them evaluated, as early detection and diagnosis can greatly impact treatment outcomes.
Your doctor may order blood tests or other diagnostic procedures to determine the underlying cause of your symptoms. By being proactive about your health and seeking medical attention, you can help ensure that any potential leukemia or other health issues are identified and addressed in a timely manner.
What Were Your First Signs of Leukemia? MyLeukemiaTeam Members Share Stories
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Medically reviewed by
Todd Gersten, M.D.
Article written by
Scarlett Bergam, M.P.H.
Think back to the time before you received your leukemia diagnosis, started cancer treatment, or found an oncologist. How were you feeling? What made your doctor order a blood test? What clued you and your doctor in on a leukemia diagnosis?
Although many people living with leukemia had no symptoms in the early months of their condition, others can recall feeling “off” in the weeks or months leading up to their diagnosis.
In this article, we highlight MyLeukemiaTeam members’ early signs and symptoms of leukemia — fatigue, pain, and more.
Unique symptoms depend on the type and stage of leukemia, but it’s important to know about common early indications that some people may experience.
Fatigue
Debilitating fatigue is one of the most commonly discussed topics on MyLeukemiaTeam — and many members say they experienced this symptom long before receiving a leukemia diagnosis. “I was sleeping 20 hours per day,” one member wrote. “I could hardly get out of bed.”
Another shared a similar sentiment: “Pain and fatigue are what originally sent me to the doctor before my diagnosis. Has anyone else experienced worsening pain and extreme fatigue before treatment?”
Persistent fatigue and weakness are among the most common early signs of leukemia. Symptoms may at first seem related to other chronic (ongoing) or infectious diseases, so people with leukemia — even their health care providers — may overlook this blood cancer as a possible cause.
A likely reason for fatigue is that blood cancer can directly cause anemia.
When you’re deficient in red blood cells, less oxygen moves through your body, causing you to feel mental and physical exhaustion before any other symptom.
After getting an official leukemia diagnosis, some members learned to better manage their fatigue. “I’m fatigued on a daily basis but have learned to roll with it and accept it,” one member wrote. “When the body says lie down, I do actually listen to it now and take a power nap.” Fatigue is an early symptom that often persists throughout the disease course, and members share tips to help others live better with this common symptom.
Pain
A variety of symptoms, including rash, may precede a leukemia diagnosis. One MyLeukemaTeam member described having an allover rash, along with headaches and bone pain, before being diagnosed. (CC BY-NC-ND 3.0 NZ/DermNet)
Many MyLeukemiaTeam members reported feeling pain before receiving their leukemia diagnosis. “I had extreme headaches, bone pain from my hips to my feet, and a rash all over my body,” one member said.
Another shared, “I had a lot of muscular pain at night.”
According to the Leukemia & Lymphoma Society, bone and joint pain often occur because leukemia cells build up in the bone marrow. On average, 1 in 4 people with leukemia experience bone pain during the early stages of the disease.
Given the many shared experiences with pain, one member offered their hypothesis: “Chronic lymphocytic leukemia (CLL) seems to magnify any kind of preexisting condition. So, if you had chronic pain before your CLL diagnosis, it’s safe to say that it will become magnified.”
People with leukemia face many common comorbidities (co-occurring illnesses), such as infections, diabetes, and heart disease. Sometimes, it’s hard to determine which symptoms come from which condition, especially before a leukemia diagnosis is made.
Sore Glands
One MyLeukemiaTeam member shared, “Swollen lymph nodes were my first main issues with acute myeloid leukemia.” At its most severe, this symptom can even lead to others, such as insomnia.
“I had a terrible time sleeping with swollen glands near my throat,” another member noted.
Approximately 20 percent of people living with leukemia experience swollen lymph nodes before receiving a diagnosis. This symptom can also occur when fighting an infection or after being given a vaccine. Swollen lymph nodes under the armpit, by the groin, or on the neck show that your immune system is working hard. But in the case of leukemia, the glands often stay swollen past the usual two weeks, are not painful to the touch, and grow over time. They represent your body’s production of cancerous blood cells.
However, this symptom may vary in severity. One member shared their early experience following diagnosis with stage 0 CLL: “I don’t have swollen glands (even though they all ache) or a swollen spleen, according to my scan.”
Brain Fog, Vision Problems, and Other Neurological Symptoms
Leukemia is also known to cause neurological symptoms. One member shared, “I was getting dizzy after aerobic exercise.
” Another described suddenly developing brain fog: “I could not get my head into work and really didn’t have the energy to think. Those are still the days that frustrate me the most!” A third described vision changes: “I began getting dry eye with impaired driving vision, as well as side-to-side vision issues.”
What do these symptoms — dizziness, brain fog, and vision problems — have in common? All are tied to leukemia’s effects on the brain.
When leukemia causes white blood cells to multiply exponentially, the blood may flow more slowly through vessels in the brain. This can lead to headaches, vertigo, nausea, vision problems, and even seizures. If these symptoms were out of the ordinary for you, they might have been what prompted you to see a doctor — before you received your leukemia diagnosis.
Sweating and Chills
Severe sweating can be an early symptom of leukemia. “I was sweating profusely followed by getting the chills,” wrote one MyLeukemiaTeam member.
(Adobe Stock)
Some MyLeukemiaTeam members described early problems with body temperature regulation, including night sweats and feeling feverish. “I was sweating profusely followed by getting the chills,” wrote one member. Another said, “I would soak my nightgown and have to change twice during the night.”
The reasons behind temperature regulation problems in leukemia are related to the immune system. You may be fighting off infection more often and intensely as your immune system is weakened by cancer. In addition, your immune system may be trying to kill cancer cells by raising your body’s temperature. Early on, these symptoms might be attributed to other conditions and illnesses.
Overall, it’s hard to distinguish the early symptoms of leukemia from the common cold, chronic pain, or general fatigue. Only in hindsight do many members relate these symptoms to leukemia that, at the time, had not been diagnosed. Sharing stories with your MyLeukemiaTeam support group can help you learn more about your condition and support others who recently received a diagnosis.
You Are Not Alone With Leukemia
By joining MyLeukemiaTeam, the social network and online community for more than 12,000 members living with leukemia, you’ll be able to discuss disease symptoms and other topics.
What were your first symptoms of leukemia? How have your symptoms changed over time? What tips do you have for those who are newly diagnosed? Share your tips and experiences in a comment below or on MyLeukemiaTeam.
References
- Leukemia — Mayo Clinic
- Spotting the Difference: Cancer Related Fatigue vs. Everyday Fatigue — Leukemia Care
- Disease- and Treatment-Related Pain — Leukemia & Lymphoma Society
- Pain Part Two: Headaches — Leukaemia Care
- Spotting the Difference: Swollen Lymph Nodes in Leukaemia vs. During an Infection — Leukaemia Care
- Spotting the Difference: Night Sweats in Leukaemia vs. Normal Night Sweats — Leukaemia Care
Todd Gersten, M.D. is a hematologist-oncologist at the Florida Cancer Specialists & Research Institute in Wellington, Florida.
Review provided by VeriMed Healthcare Network. Learn more about him here.
Scarlett Bergam, M.P.H. is a medical student at George Washington University and a former Fulbright research scholar in Durban, South Africa. Learn more about her here.
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Leukemia (leukemia) – causes, symptoms, signs, diagnosis, treatment, prognosis, recommendations
Leukemia is a group of malignant blood diseases, which are often also called leukemia or leukemia. The basis of all diseases is the replacement of normal blood cells, in this case, leukocytes, by their blasts or, in other words, by immature cells.
There are two types of this pathology – acute and chronic. Moreover, it occurs most often among all possible hemoblastoses. In people over the age of 40 years, the acute myeloid form is often detected in the diagnosis, and in children it is usually the acute lymphoblastic form.
Causes and triggers of leukemia
To date, doctors and scientists have not found an answer to the question of why leukemia develops. However, it is known that the disease is based on a mutation of the cell that produces leukocytes.
This gives rise to the development of a malignant process. The mutation of this cell leads to the fact that at the very early stage of its development it does not undergo the correct differentiation and enters the bloodstream immature – it is called a blast.
However, such cells not only appear in the blood, but they are also replaced in the bone marrow – the place where the hematopoiesis process takes place. All blast cells are identical to each other, which means that they are clones of a single cell of this type.
However, for what reason a mutant cell appears in the body is unknown. Blood leukemia is one of the most poorly understood diseases, but hematologists are already aware of some of the risk factors that can lead to such a mutation. This is:
- genetic predisposition, when there is or was a relative with such a diagnosis in the family – this indicator worsens both the prognosis of the disease and the risk of developing the disease by a factor of three;
- the presence of chromosomal abnormalities or genetic diseases in a person, for example, pathologies such as Down syndrome, Wiskott-Aldrich, Klinefelter;
- impact on the body of ionizing radiation;
- work with chemical carcinogens;
- taking cytotoxic drugs.
It often happens that leukemia develops in a person during the treatment of another oncological disease – lymphogranulomatosis, multiple myeloma, non-Hodgkin’s lymphomas. There is also a connection between leukemia and some viral diseases – in this case it is called viral.
Symptoms of leukemia
Acute leukemia usually begins suddenly, against the background of full health. The patient has an increased body temperature, symptoms of intoxication, excessive sweating, a strong decline in strength and vitality, anorexia. There are complaints of constant pain in the bones, joints, muscles.
Often the first manifestations of leukemia can be disguised as a common cold or even tonsillitis. But attention is drawn to the appearance of stomatitis in its ulcerative form or the development of gingivitis. If at this stage the pathology was not detected, then it gradually subsides and passes into the second. It is at the second stage with an asymptomatic course that acute leukemia in children is usually detected.
In medicine, it is customary to distinguish 4 syndromes that are typical for leukemia:
- anemic is manifested by pale skin, dizziness, chronic fatigue, hair loss, brittle nails;
- hemorrhagic is characterized by an increase in lymph nodes and tonsils, hepatosplenomegaly, infiltrates develop on the skin, the lungs, kidneys, and heart muscle are affected;
- intoxication is manifested by increased fatigue, headache, loss of appetite, weakness and lethargy, periodically there is an increase in body temperature;
- hyperplastic arises as a result of extraosseous damage to organs and tissues – their increase and dysfunction occurs, and the liver, spleen, and lymph nodes are especially often affected.
Chronic leukemia is most often detected in the elderly, and mainly in people of European descent. There are no specific symptoms: patients complain of excessive sweating, weight loss, an increase in internal lymph nodes, enlargement of the liver and spleen in the later stages.
Due to reduced immunity, people with this disease are often prone to colds and pneumonia.
Signs of leukemia may or may not be pronounced. In addition, they often disguise themselves as other diseases. Therefore, any disease should be considered as potentially dangerous for the development of this cancer of the blood.
Classification of leukemia
All leukemias are divided into acute and chronic. However, one must understand that acute leukemia will never become chronic, and chronic cannot worsen – this is the difference from other diseases. This terminology is used for medical convenience only.
Depending on which blood cells are affected, leukemia is lymphoblastic, myeloblastic, monoblastic, myelomonoblastic and other types. Chronic leukemias, which mainly occur in adults, are more widely represented.
Leukemia occurs in three stages. At the first, primary symptoms of a general plan appear, which are characteristic of almost any disease. It is called monoclonal, proceeds for a long time and is relatively benign.
At the second stage, the symptoms of leukemia are very pronounced and fully correspond to the hematological manifestations of hemoblastosis. The formation of secondary clones of the tumor begins, and it is often called a blast crisis.
The third stage is terminal, here the formation of new blood cells almost completely stops. It occurs in the absence of proper diagnosis and treatment in the first two stages.
Complications of leukemia
Leukemia is a serious and very dangerous disease. Without treatment, it can cause a lot of different complications. So, for example, it can be an autoimmune crisis that occurs with severe weakness, fever, fever, abdominal pain. Mediastinal compression syndrome causes severe shortness of breath, portal vein – ascites, intestines – its obstruction.
There may be damage to the spleen, which causes its infarction due to circulatory disorders. The death of the patient can occur due to cerebral hemorrhage, gastrointestinal bleeding, pneumonia, sepsis, renal liver failure.:max_bytes(150000):strip_icc()/what-is-leukemia-514157_final-bf83a1f7a16947f88447b5a7c99c71bc.png)
Leukemia diagnostics
Laboratory tests are used for diagnosis. They help to identify the disease at any stage of its development:
- Complete blood count with a clear definition of leukocytes by their varieties. This will be the best solution for the primary diagnosis of the disease.
- Blood biochemistry helps to identify disorders that may occur in the kidneys or liver.
- A bone marrow biopsy helps to find out how severe the lesion is, to make an accurate diagnosis and determine the tactics of treating the patient.
- Histology of bone marrow tissues allows you to determine the number of malignant cells and their nature.
- Molecular genetic analysis is done when the diagnosis is in doubt.
- Ultrasound of the abdominal organs helps to understand how affected the internal organs are.
- Chest x-ray helps to identify enlarged lymph nodes and other pathological processes occurring in the lungs.
A hematologist is involved in the identification and therapy, however, a pediatrician can suspect a disease in children, and a therapist in adults.
Treatment of leukemia
The therapy is carried out in a hospital setting. The main method is chemotherapy. This is a method in which the patient takes special drugs that destroy malignant cells. Schemes are selected strictly individually.
To improve the condition of the blood, the introduction of erythrocyte masses, platelets, isotonic solutions is performed. When an infection is attached, antibiotic therapy is necessary. Radiation treatment is used before bone marrow transplantation: such a transplant is performed in the absence of the effect of other methods of treatment.
If an elderly person with leukemia cannot tolerate severe treatment, palliative care is prescribed.
Recommendations for leukemia are given to each patient individually. All treatment is carried out in sterile boxes so that the patient cannot catch an infection that can be fatal for him.
The prognosis for leukemia is favorable if there is a positive result from the treatment. However, sometimes there is a risk of relapse, and then it is already very difficult to cure the patient.
The author of the article:
Belkina Tatyana Vilenovna
therapist, hematologist, KMN, online consultations
work experience 24 years
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| Remote consultation of a radiologist, professor, head of the PET / CT department, Israeli clinic Hadassah Medical Orevi Marina | 88 000 ₽ | |
| Appointment (examination, consultation) of a hematologist, professor, head of the hematology department, Israeli clinic Hadassah Medical Vladimir Weinstein | 44 000 ₽ | Remote consultation of a hematologist, professor, head of the hematology department , Israeli clinic Hadassah Medical Weinstein Vladimir | 55 000 ₽ |
| Appointment (examination, consultation) of an oncologist, professor, director of the Institute of Oncology named after Sharett of the Israeli clinic Hadassah Medical Aaron Popovitzer | 88 000 ₽ | |
| Remote consultation of a pediatric oncologist, MD, leading specialist of the Department of Pediatric Hemato-Oncology of the Israeli clinic Hadassah Medical Cohen Odai | 73 500 ₽ | |
| Doctor’s appointment (examination, consultation) -oncologist, oncourologist, head of the department of outpatient oncology at the Yitzhak Rabin Medical Center (Beilinson Hospital) Neiman Vita | 44,000 ₽ | |
| Appointment (examination, consultation) with an oncologist at the Israeli clinic Assuta Hospital Zhivelyuk Irin s | 44 000 ₽ | |
| Remote consultation of an oncologist, professor, Head of the Center for Diagnostics and Treatment of Gastrointestinal Tumors of the Israeli clinic Hadassah Medical Hubert Ayaly | 71 500 ₽ | Remote consultation of a pediatric oncologist, hematologist, Dror Levin | 89 000 ₽ |
| Reception (examination, consultation) of an oncologist, oncosurgeon, professor, head of the department of oncosurgery clinic Rambam Health Care Campus Eli Kakiashvili | 33 000 ₽ | |
| Remote consultation of an oncologist, MD, head of the oncogenetics department of the Israeli clinic Hadassah Medical Kaduri Luna | 71 500 ₽ | |
| Remote consultation of an oncologist, senior physician of the Research Institute and treatment of melanoma and skin cancer “Ella” Chaim Sheba Medical Center (Tel Hashomer) Netanel Asher | 87 000 ₽ | |
| Remote consultation of an oncologist, professor, head of the oncogynecology department of the Israeli clinic Hadassah Medical Tamar Perry | 55 000 ₽ | |
| Remote consultation of a neurosurgeon, specialist in brain surgery, deputy head of the department neurosurgery of the Israeli clinic Assuta Hospital Margalita Nevo | 67 000 ₽ | |
| Remote consultation of an oncologist, onco-pulmonologist, head of the department of lung tumors at the Institute of Oncology of the Israeli clinic Assuta Hospital Elisabeth Dudnik | 81 500 ₽ | |
| Remote consultation of an oncologist, oncourologist, head of the outpatient oncology department of the Yitzhak Rabin Medical Center (Beilinson Hospital) Neumann Vita | 90 000 ₽ | |
Remote consultation of an oncologist, d. m. n., Leading specialist of the Israeli Oncology Department of the Israeli Hadassah Medical Clinic, Mark Temno | 47 500 ₽ | |
| Remote consultation of the Gastroenterologist oncologist, Head of the Department of Malignant Narodic Clinics Ssuta Hospital Esther Tahover | 66 000 ₽ | |
| Remote consultation of an oncologist, leading specialist of the Oncology Institute of the Israeli clinic Assuta Hospital Julia Grinberg | 65 000 ₽ | |
| 40 500 ₽ | ||
| Correspondence consultation of an oncologist according to primary documents | 6 500 ₽ | |
| Remote consultation of an oncologist according to the documents repeated | 5 500 ₽ | |
| Remote consultation of an oncologist, candidate of medical sciences, according to the documents primary 9 0180 | ||
| Correspondence consultation of an oncologist, PhD, repeated according to documents | 7,500 ₽ | |
| Remote consultation of an oncologist, neurooncologist, leading specialist of the oncological department of the Sourasky Medical Center (Ichilov) Felix Bokshtein | 60 500 ₽ | |
| Oncological consultation | 24 000 ₽ | |
| Interdisciplinary consultation with the participation of foreign specialists | ||
| Remote consultation of an oncologist, pulmonologist, head of the Institute of Oncology of the University Medical Center ” Meir, Kfar Saba, Professor Mai Gottfried | 90,000 ₽ | |
| Remote consultation of an oncologist, professor, head of the department of bone and soft tissue oncology of the Yitzhak Rabin Medical Center (Beilinson Hospital) Alona Zer-Koch | 79 000 ₽ | |
| Remote consultation of the oncologist of the Israeli clinic Hadassah Medical Yakir Rotenberg | 28 500 ₽ | |
| Remote consultation neurologist, neurooncologist, head of the neurooncological service of the medical center Ichilov Rabin (Beilinson hospital) Felix Bukshtein | Rs. 0180 | 82 500 ₽ |
| Remote consultation of an oncologist, director of the neuro-oncological unit of the Chaim Sheba Medical Center (Tel Hashomer) Helen Toledano | 90 000 ₽ | Remote consultation of an oncologist, professor, head of the oncology center Davidov at the Yitzhak Rabin Medical Center (Beilinson Hospital) Gal Merkel | 0179 Fine-needle aspiration biopsy of the thyroid or parathyroid gland under ultrasound control | 6 900 ₽ |
| Spinal puncture | 14 300 ₽ | Care of the venous port (port flushing) | aseptic dressing | 880 ₽ |
| Applying a large aseptic dressing | 1 700 ₽ | |
| Trepan biopsy of the bone marrow of the iliac wing | 22,000 RUB | |
| Aspiration biopsy of the bone marrow | 11,000 RUB | |
| Phlebotomy | 5 500 ₽ |
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