Leukemia is a cancer that affects both children and adults. Treating adult and childhood leukemia is a complex battle and the diagnosis can be a difficult one to accept.
If you or a loved one are nearing end stage leukemia and wondering what the symptoms might look like, our guide is here for you. We know it’s important to understand your position, and we want to reiterate that we’re here for you.
The Different Types of Leukemia
To understand end stage leukemia, and what it looks like, it’s good to first understand a bit about the different types of leukemia — as they each react uniquely within the body. 1
There are four main types of leukemia. Whether your leukemia is considered myeloid or lymphocytic has to do with which bone marrow cells the cancer begins in. Leukemia will also be referred to as acute or chronic, depending on whether the abnormal cells are immature or mature.
In chronic leukemias, the cells may look normal. However, they don’t typically fight infection as well as normal blood cells do. These leukemias can take a while before causing problems yet they tend to be harder to treat than acute leukemias. In acute leukemias, the bone marrow cells do not mature in the right way, yet they continue to reproduce abnormal cells. Some types of acute leukemia respond well to treatment (others do not).
These are the four main types of leukemia:
- Acute myeloid (or myelogenous) leukemia (AML)
- Chronic myeloid (or myelogenous) leukemia (CML)
- Acute lymphocytic (or lymphoblastic) leukemia (ALL)
- Chronic lymphocytic leukemia (CLL)
What Causes Leukemia?
To answer the question of what causes leukemia, it’s good to first familiarize yourself with the human body’s three types of blood: red blood cells that carry oxygen, white blood cells that fight against infection, and platelets that enable blood to clot.
When someone has acute or chronic leukemia, their body thinks it needs more blood cells than it actually does. As a result, the body’s white blood cells become ineffective, and it stops producing the red blood cells and platelets that you need for survival.
Symptoms of Leukemia
Many patients want to know what are the early signs of leukemia versus the end stage leukemia symptoms. Sometimes, patients in the early stages of leukemia won’t show symptoms at all, so how is leukemia diagnosed?
A doctor might not suspect leukemia based on symptoms alone but might find in a physical examination that you have swollen lymph nodes or an enlarged liver or spleen.
Typically, a blood test will show an abnormal white cell count, which will lead to further tests that will confirm the diagnosis. Other tests might include blood tests to check for leukemia cells, a bone marrow biopsy (in which a sample of bone marrow is removed and examined), and tests for genetic abnormalities. Oftentimes, if the bone marrow is affected, patients will undergo a bone marrow transplant. 4
Across the board, for both adult and childhood leukemia,, there are various symptoms to take note of. If you’re curious about how you can test for leukemia at home, a good place to start is the symptoms. The severity of the symptoms varies depending on which type of leukemia you have and remember, they don’t always show up.
- Easy bruising and bleeding, including recurring nosebleeds
- Persistent fatigue
- Frequent or severe infections
- Fever and chills
- Dramatic weight loss
- Swollen lymph nodes
- Enlarged liver or spleen
- Pain or tenderness in the bones
- Profuse sweating, especially at night
- Petechiae, a condition that disseminates tiny red splotches on your skin (if you’re wondering what do leukemia spots look like — the clusters often resemble a rash)
As Leukemia Progresses: Blood Transfusions
With leukemia, there is no tumor. Instead, cancerous cells invade the body, blood, and bone marrow, which interferes with the production of red cells, white cells, and platelets in the bone marrow.
Cancer patients with leukemia might develop anemia (low red blood cells) or thrombocytopenia (low levels of platelets). Sometimes, they develop leukopenia (low levels of white cells). During treatment for chronic or acute leukemia, most patients require blood transfusions at some point to replace abnormal blood cells.. 2
If the number of platelets gets too low or if a patient is experiencing symptoms like nosebleeds or bleeding gums, they might require a platelet transfusion. For low red blood cell counts, a patient might need a red blood cell transfusion. When red blood cells are low, it’s common for individuals to feel confusion, shortness of breath, and fatigue.
When chronic leukemia progresses, end stage leukemia transfusions may be needed more frequently to supply patients with normal blood cells.. If a patient needs multiple transfusions a week, the disease has most likely started to greatly affect their quality of life. With the immune system weak, infections like pneumonia become a threat.
End stage leukemia symptoms at this point include a complete lack of energy and weakness. Leukemia patients may spend most of their time asleep, resting, or in bed.
When it comes to end stage leukemia, elderly patients (as well as people of all ages) can die from their blood’s inability to clot. This can lead to a sudden loss of blood or a stroke.
During the end stages, it’s important for family members to recognize what does leukemia pain feel like in their loved one. Thankfully, with the right palliative care measures, a patient can be kept comfortable as they near the end.
What Else to Expect in the End Stages
When a person with cancer is nearing death, the end stage symptoms can be different for everyone. There’s no telling when a person’s time to go will be or how that will happen. These are some of the end stage leukemia symptoms to be aware of.
In most cases, toward the end of cancer, a patient will be extremely weak. They’ll have trouble moving around and getting out of bed. Sometimes, they’ll experience sudden movements of the muscles, like jerking of the hands, arms, legs, or face.
Leukemia patients may experience confusion about time, place, or people. Their attention span might be short and they may have problems focusing on what’s happening around them.
Near the end, cancer patients may show little to no interest in food and fluid. It’s not uncommon to go days with very little food and fluid.
In the end stage, you may notice your loved one is drowsy. If their pain is relieved, they might sleep most of the day. It might also be hard to wake them.
Patients might be restless, anxious, or lonely, particularly at night. They may pull at the bed linen or talk about things that are unrelated to the present moment.
Mucus may collect in the back of a patient’s throat, which can cause a rattling sound. Although it’s difficult to hear, it often doesn’t bother the patient.
Circulation slows near the end, which means the skin on the arms and legs might feel cold to the touch. The skin might also darken and look blue or blotchy.
Heart rate might become fast, faint, or irregular.
Patients may have trouble closing eyelids and vision may become blurry.
Breathing might speed up and slow down. This is due to less blood circulation. Patients might also grunt while breathing or not breathe at all for periods of 10 or even 30 seconds.
Urine and Stool
Urine might become darker and the patient may lose control of both urine and stool.
What You Can Do To Help
If you’re a caregiver looking after a family member or loved one who is experiencing end stage leukemia, it’s important to take care of yourself both physically and emotionally. Remember, you can’t pour from an empty cup, so take time to breathe in the fresh air, get enough sleep, and exercise. Make sure you fuel yourself with a healthy diet and encourage your loved one to eat a leukemia diet that’s rich in whole grains, fruit, and vegetables. If they aren’t up for eating, try offering fluids or soup through a straw.
Offer comfort to your loved one through reassuring phrases and simply by being there for them. Sometimes, patients nearing the end feel extreme loneliness, so offering yourself as a companion is one of the best things you can do.
Make sure the patient is comfortable with a good mattress that makes it easy to rest. Change the bedsheets and use non-scented laundry detergent if they are sensitive to smells. If the patient needs help breathing, you can try elevating their head or turning them onto their side if it’s safe to do so.
Use comfortable blankets to keep them warm and cozy. You can also soak their feet or hands in warm water to offer additional comfort.
Like all aspects of cancer, the end stage is difficult, too, though thankfully with the right care, we hope you and your loved one can be comfortable and that your quality of life can be good.
Chemotherapy, radiation therapy, and other cancer treatment methods can be invasive and leave CLL patients feeling weak. At ITC, we focus on alternative cancer treatment methods.
As always, feel free to reach out to our ITC team if there’s anything we can do to help. Whether you’d like more information about leukemia or are interested in hearing more about our alternative therapies, our team is always an email or phone call away.
- “What is Chronic Myeloid Leukemia?” cancer.org, July 19, 2018, https://www.cancer.org/cancer/chronic-myeloid-leukemia/about/what-is-cml.html. Accessed May 29, 2020.
- “What Can Be Expected as Leukemia Progresses?” virtualhospice.ca, (no publish date), https://www.virtualhospice.ca/en_US/Main+Site+Navigation/Home/Support/Support/Asked+and+Answered/What+to+Expect+with+Various+Illnesses/Cancer/What+can+be+expected+as+leukemia+progresses_.aspx. Accessed May 29, 2020.
- “What to Expect as a Person With Cancer is Nearing Death.” cancer.org, May 10, 2019, https://www.cancer.org/treatment/end-of-life-care/nearing-the-end-of-life/death.html. Accessed May 29, 2020.
- “Leukemia.” health.harvard.edu, December 2014, https://www.health.harvard.edu/cancer/leukemia. Accessed May 29, 2020.