I am not a doctor or any kind of medical professional; I am merely a patient who is doing his best to be well informed. CLL seems to wax and wane, but over time gradually gets worse.
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I have had chronic lymphocytic leukemia for at least eight years now. No telling what caused it, but I did spill massive amounts of the weed killed 2,4-D on myself twice during the year or so before I was diagnosed. The symptoms I have experienced have changed and evolved over time, but pretty much they all are the ones described in the literature and research on CLL.
The first symptom was massive night sweats. I was in England the first time this occurred. Now these night sweats are no longer quite as severe, but they take place most nights.
Itching is another symptom. Severe itching, so bad that sometimes people scratch themselves bloody. Normally I don't draw blood, but I admit that I have occasionally.
Swollen lymph nodes are another common symptom. Especially around your neck, under your arms, your abdomen or groin, etc. Mine have grown absolutely massive...like grapefruit. At first they are soft, then they turn hard. They do get really quite painful at times. Some people get massive swelling of the spleen and/or liver.
Tiredness and an extreme lack of stamina is a frequently mentioned symptom.
Of course a gradual decrease in the effectiveness of the body's immune system is almost normal with CLL. This suppression of the immune system causes more pneumonia and upper respiratory problems, and surprisingly tooth decay becomes a genuine problem. Healing of common cuts and scrapes takes much longer than before.
As the amount of defective cancerous white blood cells increases dramatically, both the platelets (which help clotting) and the hemoglobin containing red blood cells start decreasing. So blood clotting becomes a big problem, and as the red blood cells decrease one gets to the point where insufficient oxygen reaches important organs like the body's major organs and muscles such as the heart, the brain, the digestive process, the arms and legs, etc. This anemia has a simple name, but it really is quite devastating and debilitating. With this poor oxygen supply comes an urge to dose off. If one is driving at the time this is problematic.
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A few days ago just lifting up my digital SLR camera (with a long telephoto lens) to my eye to try and get a nice moon shot required so much oxygen that I honestly thought I was having a heart attack. This phenomenon occurs every week or so, or pretty much whenever I forget that I need to move very slowly and take things really easy. The dog barking and thinking there might be a night time intruder (getting my loaded pistol out, etc.) with all the adrenalin is another example; or just the effort of hooking up the little utility trailer to the car.
Nocturnal leg cramps are frequently associated with CLL, and I have dealt with this problem for several years. It now is a several times nightly occurrence. The muscles in my lower legs have become so stiff that it is now very difficult for me to walk. My fingers now cramp and involuntarily contract also. All of this falls under the medical terms myopathy and tetany.
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There are other unpleasant symptoms, but I'm not certain if they are caused by the CLL, are actually as a result of various diseases I have acquired because of the weakened immune system; or might be side effects of the various antibiotics I have had to take: One's hands and feet become quite numb and are mostly unable to perform normal tasks. I have now completely lost all sense of smell, which of course greatly affects one's ability to taste. Very significant loss of hearing, although this seems to be gradually improving.
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At first this disease is not really a big deal, but as one gets to an advanced stage CLL is an unpleasant experience indeed. Some people even begin to question their quality of life. If this disease is not curable, and things are gradually going to get more and more unpleasant, does one reach a point where it no longer makes sense to keep beating one's head against the wall?
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