Fundamentally, CLL cells are abnormal and short-lived, unlike normal lymphocytes which persist in some cases for decades. The CLL cells must be replenished from a relatively small pool of cancerous stem cells. Any number of things can cause these cells to be produced at a slower rate or increase their rate of destruction, which might lead to variability in the CLL counts. It is not uncommon for counts in CLL to go up and down depending on what else might be going on in a person’s body. However, in some cases the drop in cell count might be a signal that the cancer stem cells have mutated into a more aggressive form, which leads to even more abnormal and shorter-lived cells. This too would lead to lower counts. With the changes happening in your husband’s counts, I too would be nervous about delaying therapy for much longer. A second but related point has to do with the new infections that your husband has been experiencing. With CLL, there are low levels of the antibodies that would otherwise protect against a variety of infections. These can be replaced with a blood product commonly called IVIG (intravenous immunoglobulin). You and he should ask the oncologist about whether it is also time to consider IVIG therapy. Q2. I was diagnosed with stage 0 CLL eight years ago. My WBC is 42. My last blood test showed that my platelets have decreased from a steady 250 to 140, but my oncologist didn’t speculate as to why this would be. What does it mean? Is there any way to build up platelets? Do I need chemo? CLL, as it slowly develops, has a tendency to eventually affect the function of the bone marrow. In the marrow, cells that fight infections (neutrophils and other kinds), carry oxygen (red blood cells), and form clots to stop bleeding (platelets) are continually produced. CLL can interfere with this production, causing decreased numbers (“counts”). I suspect strongly that your platelet count has fallen to 140,000 from 250,000 for this reason. Platelet counts don’t typically catch the interest of an oncologist until they fall to about 50,000. An alternative explanation for the drop in platelets might be enlargement of the spleen. Patients with CLL can often develop a large spleen that then traps and destroys platelets. There is presently no specific way to build up platelets besides trying to treat the CLL, though there are drugs in clinical development that are designed to boost platelets directly. However, it is important to keep in mind that your current count wouldn’t even be considered abnormal. For this reason, considering chemotherapy at this juncture probably isn’t necessary either. Unless you are having serious symptoms, such as bleeding, infections, or severe anemia, I wouldn’t offer you chemotherapy now. For the same reason, I would not suggest surgery to remove your spleen if that happened to be the explanation for the lowered platelet count. Q3. Do people with CLL have seizures caused by CLL? Are seizures and CLL related in any way? CLL, per se, does not cause seizures. If the total abnormal white blood cell count is very high, the blood flow in the vessels of the brain and elsewhere can become sluggish, a condition called leukostasis. Leukostasis can be associated with many brain abnormalities, including seizures. Having an oncologist check the white count is critical. If the CLL has transformed into a more aggressive leukemia or lymphoma, this too can show up as seizures. Finally, because CLL is associated with decreased immune function, brain infections might lead to seizure activity. Q4. I have CLL. What steps can I take to keep it under control and to lower my number of bad white blood cells? — Carol, New York For some cancers (although not much data exist for CLL), a healthful lifestyle may lead directly to slower progression of the cancer or longer periods of remission after treatment. At the very least, being healthy will make your tolerance of actual therapy from your hematologist or oncologist easier when that time arrives. In its later stages, CLL requires aggressive therapy provided to a patient by a hematologist or oncologist. Until then, CLL is often an “indolent” process that never becomes life-threatening. The majority of CLL patients therefore die with their disease, not from it. During the period of “watchful waiting,” it’s important to lead as healthful a life as possible: Eat a diet rich in fruits, vegetables, and grains, and limit processed foods and meats. Give up smoking and excessive drinking. It’s also helpful to exercise three to five times a week in an aerobic program in which you work out at the appropriate target heart rate for your age. To my knowledge, there are no effective homeopathic or naturopathic alternatives to CLL treatment. That said, I am not expert in these fields, so consulting with such a provider is also an option. Sadly, our knowledge of CLL remains incomplete, despite intense efforts in research and clinical trials. Over time, this research will help define better ways to manage the disease and to prolong the time before intensive therapies are required. Q5. What is considered a high white blood cell count? Mine is 139,000. My only other problem is a slightly swollen spleen and some nodes. I feel good most of time, and I’m trying to hold off on treatment as long as possible. Any encouraging new treatment coming down the pipe? Typically, most oncologists begin to “pay attention” around 100,000. This level is not, by itself, a strong reason to treat, provided there are no other symptoms. But it is a cell count at which the pace of the disease activity can pick up. As long as there are no specific symptoms that are limiting your daily activities or any medical problems caused as a result of the CLL, treatment should be held off. If you develop new symptoms, it would be prudent to see your oncologist. There are several new treatments in the pipeline in addition to the drugs currently used. None of the new drugs are magic bullets, unfortunately, but it will be interesting to see how these therapies will be used with the current drugs. In this way, we hope to keep CLL a chronic disease for a longer period of time. Q6. My husband has CLL and his white blood count is 80,000. He is starting to feel tired and feels like he has the flu that won’t go away. At what white count do you usually have to start treatment? Treatment is generally initiated by most of my colleagues when CLL interferes with one’s ability to function normally. There is actually no pivotal count above which we consider therapy standard. Some people with low counts might start therapy while others with astronomically high counts may continue to watch and wait. Other common reasons to start therapy are autoimmune complications, transformation of the disease to a more aggressive form, recurrent infections, low red cell or platelet counts, threatened organ function and large amounts of bulky disease in the lymph nodes and other tissues. Q7. Can stress affect the white blood count in chronic lymphocytic leukemia (CLL)? While there are no published research studies showing that stress affects the white blood cell count in people living with CLL, it’s a good idea in terms of general physical and emotional health to control stress levels in your life. A moderate amount of stress is fine, and may even be good, but it’s probably best for all of us to avoid severe or chronic physical and emotional stress if we can. Q8. Could you please explain to me the relationship between CLL and low ferritin levels? My husband was diagnosed with CLL six years ago but may have had the disease for considerably longer. His current white blood cell count is 30,000, lymphocyte count around 26,000, and Beta2 is 3.2. His ferritin level is 14. If intestinal bleeding is ruled out, could CLL itself explain the low level of ferritin? Ferritin is a protein that helps your body store iron, which is important for red blood cell production. Low ferritin is usually caused by bleeding from the intestines. Most cancers are actually associated with high ferritin. It is noteworthy, however, that many people older than 60 might be found to have low ferritin levels even in the absence of anemia or bleeding. As long as your husband feels well and is not anemic, a low ferritin is probably not harmful. I am unable to find any literature on a meaningful relationship of low ferritin levels in CLL specifically. Quite frankly, it has never been studied. Q9. I keep a spreadsheet to monitor my blood tests. (I graph my white blood cell count and the percentage of neutrophils compared to lymphocytes.) My white count has been in the normal range since treatment in the fall of 2001, but has slowly crept up to the very top of the normal range. (The actual count was 11,000 last week.) My concern is the percent comparison. There has been a steady progressive change from 50 percent neutrophils and 35 percent lymphocytes to 31.6 percent neutrophils and 60.8 percent lymphocytes over a four-year period. I am on no drugs and have been feeling great, but now I’m wondering if I am wearing down quicker than I should. (I have regular appointments with a good oncologist.) Is the percentage comparison a valid indicator for when my next treatment will happen? The total lymphocyte count is the best indicator of when treatment should occur. The absolute number of neutrophils is more important than the percentage. As you know, neutrophils are the mature white blood cells that are crucial to fighting infection. The absolute neutrophil count consistently below 1,000 is worrisome and a count below 500 is a compelling reason for treatment. The absolute neutrophil count (or “ANC”) is calculated by multiplying the percentage by the total white count. In your case, the ANC is 3,476 (11,000 x .316). Learn more in the Everyday Health Leukemia Center.
