These are the experiences and the journey of one person who has CLL. I have no medical training of any kind. I am simply an informed patient who was diagnosed with CLL 6-1/2 years ago when I was 53 years old.
CLL likes men more than women, by a factor of almost two. It also tends to attack older men much more often than young people. Often one does not even know that one has this type of leukemia at first. Because of some other event, such as a bad infection, the doctors do a blood test and they find that the level of white blood cells is elevated enough to suggest CLL.
In CLL some of the body’s white blood cells become defective. They no longer are very good at fighting disease, and like most cancer cells they do not know when to die. So they just keep living and reproducing more of these defective white blood cells. Over time as the disease progresses the body’s immune system gradually becomes worse at fighting off diseases of any kind, either bacterial, fungal, mould, or viral.
As these defective white blood cells continue to multiply they begin to displace the white blood cells which do still fight disease properly. This is called immunodeficiency. They also gradually start displacing some of the red blood cells, which carry oxygen around to the body’s cells. So the patient can become increasingly short of breath. In the later stages of CLL the defective white blood cells can even start displacing platelets, which assist the blood in clotting in the event of an injury.
The biggest cause of death among CLL patients is pneumonia.
In addition to defective white blood cells and immunodeficiency, CLL has many other odd effects on the body. Many patients experience some or all of these symptoms. All are familiar to me.
Hot feet: It sounds silly and almost comical, but hot, wet feet can be a problem. Fungus can become a genuine problem, especially with the body’s immune system no longer performing at an optimal level.
Sweating: Many CLL patients experience uncontrollable sweating, includ
ing night sweats where the bed sheets become totally soaked. A side effect of this massive sweating is dehydration, so CLL patients typically drink large amounts of water. This massive intake of water can have unintended consequences over time, including the washing out excessive amounts of various minerals or even kidney damage.
Leg Cramps: Especially at night when one is sound asleep, a severe leg cramp (Charlie horse) is a real problem. Some patients experience these leg cramps almost every night; sometimes several times per night. There are those who have suggested that this may be associated with dehydration or perhaps a calcium deficiency. So some CLL patients drink large amounts of water and take a Tums before going to sleep, or even during the night after the first leg cramp strikes.
Itching: Some CLL patients experience terrible, almost uncontrollable itching. Itching which is so bad that in some cases they scratch themselves bloody.
Swollen Lymph Nodes: In addition to blood vessels carrying blood all around the body, the body also has the lymphatic system, which carries a clear fluid around the body to help fight disease and help repair injuries. To quote from Wikipedia, “A Lymph node is an organ consisting of many types of cells, and is a part of the lymphatic system. Lymph nodes are found all through the body, and act as filters or traps for foreign particles. They contain white blood cells. Thus they are important in the proper functioning of the immune system.” These lymph nodes are most prominent in the neck, arm pits, groin, and internally in the deep intestinal cavity.
It is common for these lymph nodes to swell in CLL patients. Some of these swollen lymph nodes can become quite large, even several inches across. When these swollen lymph nodes become hard, the tumor mass is often referred to as a lymphoma. On the surface of the neck or arm pits these tumors can be mostly cosmetic or annoying. But when the deep intestinal lymph nodes swell and get hard they can cause real problems. This is especially worrisome when these swollen lymph nodes begin pressing against vital organs like the intestines, the esophagus, or the heart.
In almost all cases, CLL is not curable. This statement is important to accept, so I should probably repeat it: CLL is not curable.
Various toxic chemotherapy treatments have been tried as therapy. Mostly the goal is to improve the quality of life of the CLL patient or to try achieving a temporary remission rater than a permanent cure. To my knowledge there have been no properly executed scientific trials which actually prove that any of these treatments increase life expectancy significantly, or maybe even not at all. Some really smart doctors do disagree with me on this, and I certainly am only an informed patient, not a physician. But these same doctors are only able to cite anecdotal evidence. Perhaps some of these CLL treatments really do help people to live longer.
But it also is also a fact that many of these chemotherapy treatments further reduce the proper functioning of the body’s immune system, or in some cases even cause the CLL to morph from a chronic and slow growing disease into a rapid onset acute disease which is extremely life threatening in very short order.
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CLL likes men more than women, by a factor of almost two. It also tends to attack older men much more often than young people. Often one does not even know that one has this type of leukemia at first. Because of some other event, such as a bad infection, the doctors do a blood test and they find that the level of white blood cells is elevated enough to suggest CLL.
In CLL some of the body’s white blood cells become defective. They no longer are very good at fighting disease, and like most cancer cells they do not know when to die. So they just keep living and reproducing more of these defective white blood cells. Over time as the disease progresses the body’s immune system gradually becomes worse at fighting off diseases of any kind, either bacterial, fungal, mould, or viral.
As these defective white blood cells continue to multiply they begin to displace the white blood cells which do still fight disease properly. This is called immunodeficiency. They also gradually start displacing some of the red blood cells, which carry oxygen around to the body’s cells. So the patient can become increasingly short of breath. In the later stages of CLL the defective white blood cells can even start displacing platelets, which assist the blood in clotting in the event of an injury.
The biggest cause of death among CLL patients is pneumonia.
In addition to defective white blood cells and immunodeficiency, CLL has many other odd effects on the body. Many patients experience some or all of these symptoms. All are familiar to me.
Hot feet: It sounds silly and almost comical, but hot, wet feet can be a problem. Fungus can become a genuine problem, especially with the body’s immune system no longer performing at an optimal level.
Sweating: Many CLL patients experience uncontrollable sweating, includ
ing night sweats where the bed sheets become totally soaked. A side effect of this massive sweating is dehydration, so CLL patients typically drink large amounts of water. This massive intake of water can have unintended consequences over time, including the washing out excessive amounts of various minerals or even kidney damage.Leg Cramps: Especially at night when one is sound asleep, a severe leg cramp (Charlie horse) is a real problem. Some patients experience these leg cramps almost every night; sometimes several times per night. There are those who have suggested that this may be associated with dehydration or perhaps a calcium deficiency. So some CLL patients drink large amounts of water and take a Tums before going to sleep, or even during the night after the first leg cramp strikes.
Itching: Some CLL patients experience terrible, almost uncontrollable itching. Itching which is so bad that in some cases they scratch themselves bloody.
Swollen Lymph Nodes: In addition to blood vessels carrying blood all around the body, the body also has the lymphatic system, which carries a clear fluid around the body to help fight disease and help repair injuries. To quote from Wikipedia, “A Lymph node is an organ consisting of many types of cells, and is a part of the lymphatic system. Lymph nodes are found all through the body, and act as filters or traps for foreign particles. They contain white blood cells. Thus they are important in the proper functioning of the immune system.” These lymph nodes are most prominent in the neck, arm pits, groin, and internally in the deep intestinal cavity.
It is common for these lymph nodes to swell in CLL patients. Some of these swollen lymph nodes can become quite large, even several inches across. When these swollen lymph nodes become hard, the tumor mass is often referred to as a lymphoma. On the surface of the neck or arm pits these tumors can be mostly cosmetic or annoying. But when the deep intestinal lymph nodes swell and get hard they can cause real problems. This is especially worrisome when these swollen lymph nodes begin pressing against vital organs like the intestines, the esophagus, or the heart.
In almost all cases, CLL is not curable. This statement is important to accept, so I should probably repeat it: CLL is not curable.
Various toxic chemotherapy treatments have been tried as therapy. Mostly the goal is to improve the quality of life of the CLL patient or to try achieving a temporary remission rater than a permanent cure. To my knowledge there have been no properly executed scientific trials which actually prove that any of these treatments increase life expectancy significantly, or maybe even not at all. Some really smart doctors do disagree with me on this, and I certainly am only an informed patient, not a physician. But these same doctors are only able to cite anecdotal evidence. Perhaps some of these CLL treatments really do help people to live longer.
But it also is also a fact that many of these chemotherapy treatments further reduce the proper functioning of the body’s immune system, or in some cases even cause the CLL to morph from a chronic and slow growing disease into a rapid onset acute disease which is extremely life threatening in very short order.
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