Chronic lymphocytic leukemia can certainly invade into the fluid lining the brain and possibly the lining of the brain itself. The absolute best way to evaluate this possibility would be to perform a lumbar puncture (spinal tap) to directly look for the CLL cells in the cerebrospinal fluid. Other tests like an MRI are sometimes useful, but it would not be the first test I would obtain in this circumstance. When cancer travels to the lining of the brain, it’s called meningeal carcinomatosis, and it’s a serious and potentially life-threatening complication. Symptoms can include severe headaches, trouble with balance and sensory problems such as vision loss or deafness. Despite this persistent symptom that’s been troubling you, your blood test results are encouraging. Overall, if your white count is only 11, I doubt that you have CLL in the brain. Q2. My brother-in-law was just diagnosed with chronic lymphocytic leukemia. The only symptom he had was headaches of migraine proportion. The doctors found that the CLL was in the brain lining and he is beginning chemotherapy next week. In all of my reading I have not seen anything mentioned about the CLL traveling to the brain lining. Can you please address this issue and talk about the seriousness of CLL being found in the brain lining? Thank you. Any lymphoma or leukemia harbors the potential to travel and establish itself in the lining of the brain. The official term is meningeal carcinomatosis. It is a rare and terrible complication of this disease and is often life-threatening. Treatment might consist of whole brain irradiation or of systemic chemotherapy or biologic therapy. Q3. My dad has CLL, and I was wondering if it can spread to other parts of his body like any cancer? Excellent question! CLL is a “liquid” cancer that tends to circulate in the bloodstream and thus can be throughout the body at any given time. It is also very likely to be present in certain other tissues such as the bone marrow and lymph organs like the spleen and lymph nodes. When it is predominantly present in the solid form, we call the disease small lymphocytic lymphoma (or SLL). Q4. Do you know of any research being done for CLL patients who develop progressive multifocal leukoencephalopathy (PML)? My mother was diagnosed with CLL 15 years ago and was healthy during that time. Her oncologist determined that chemo was necessary because her bone marrow was over 90 percent infiltrated. She completed her fourth chemo treatment (out of six) and developed PML symptoms. MRI and spinal tap confirmed the PML. She passed away within six weeks of PML diagnosis. It was difficult finding information when my mother was diagnosed with PML. Most of the PML information we found was about HIV patients, long-term chemo, high-dose chemo or transplant patients, none of which fit my mom’s circumstance. Very little is known about progressive multifocal leukoencephalopathy (PML) in general. PML is an inflammatory disease that damages nerves in the white matter of the brain. The virus that causes it — known as the JC virus — is probably very common in the general population. However, the virus only causes disease in a handful of people who have severely compromised immune systems. The risk of developing PML is not determined by the specific diseases (HIV, transplantation, leukemia, etc.) but rather by how poorly the immune system functions. Because PML is so rare in general and in particular in CLL, there is unfortunately very little information available at present. Q5. I am a 44-year-old CLL patient who will soon be undergoing a donor stem-cell transplant. I was diagnosed as stage IV eight years ago with significant disease in my bone marrow. I have gone through chemotherapy treatments three times in those eight years. If I was diagnosed stage IV when I was 36 years old, how long do you think I had the CLL in my body, knowing that CLL is a slow-growing type of lymphoma? Also, why did I get CLL at such a young age when it typically occurs in people who are much older than I was at the time of diagnosis? CLL is a catch-all phrase that encompasses a variety of blood cell cancers with subtle differences that determine how aggressively the disease behaves. While it’s true that CLL is often a slow-growing disease, there are aggressive subtypes. Your case, I suspect, has been aggressive from the start — hence the rapid progression and need for such aggressive therapies. The abnormalities that lead to any cancer take years to happen, generally speaking. So at some level you have probably had abnormal CLL cells for some time although precisely how long is unclear. CLL is typically a disease of older individuals, but there are many folks who develop the disease earlier in life. If there are other members in your family with CLL (or other “lymphoproliferative diseases” in which white blood cells are overproduced), your disease might be a case of inherited cancer. Earlier age at the onset of symptoms or diagnosis is common with familial CLL syndromes. Learn more in the Everyday Health Leukemia Center.
