June 2018

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MONTHLY QUIZ:

Choose the correct statement below:

1. CLL most commonly presents in men and in the elderly (over 70).
2. CLL has two peak incidences: a smaller peak at age 46 and a largest one at age 72.
3. CLL is most common in men in their 50s and 60s.
4. CLL affects men and women equally.

The correct answer is #1. CLL is slightly more common in men and the average age at time of diagnosis is 72. It is quite rare but possible for those under 30.

THE BASICS: Complications of CLL

Seeing as CLL is a cancer of the immune system, it is not surprising to discover that some of the most serious complications associated with CLL are related to immune dysfunction. The first is due to the lower immunity we all have to varying degrees. We are more prone to infections, especially pneumonia. That is why it so important to be careful about hand washing, to avoid sick family and friends, to get our “killed” vaccines, and to be aggressive about seeking medical care if we do get ill. We also are at higher risk for other cancers, especially skin cancers, so we need to get all the appropriate screening tests and to do what we can to lower our risk through exposure – Stop smoking, use sunscreen, and eat healthy foods.

The second problem is auto-immunity, where our own immune system turns against us. Although rare, the consequences can be life threatening. The most common problem is when our immune system attacks our own red blood cells, which is called auto-immune hemolytic anemia (AIHA). If we attack our own platelets, that is known as immune thrombocytopenic purpura (ITP). There are other less common autoimmune complications as well. The take-away message is that if we are anemic or our platelet count is low, we need to ask our doctors to consider respectively AIHA or ITP as part of the differential diagnosis.

NEWS

The CLL Society worked with LLS, LRF, IWMF and patients and doctors to provide feedback about the recent change in pricing and formulation to ibrutinib that could make the medication even more expensive for many and more difficult to quickly adjust the dose. We are proud of our small role in making this happen and are so pleased that the manufacturers saw the light and kept the option of the capsules available.

WORD/ACRONYM OF THE MONTH

MRD stands for minimal residual disease. When our CLL is no longer detectable by imaging of the nodes and other organs and by routine blood and bone marrow tests, we are said to be in a complete remission (CR), but there can still be a tiny amount of residual disease. Using very precise testing, we can then search for as few as one cancer cell (or even less) per 10,000 cells. If nothing is still found, we are said to be MRD negative and that is very good news. That doesn’t mean there is no cancer. It simply means there is no detectable cancer. MRD can be tested in both the blood and the bone marrow. Also, it is possible to be MRD negative in both, but still not be in a complete remission if some nodes or the spleen are still enlarged. This may be due to scarring and not residual cancer which prevents the nodes or spleen to shrink back to normal size.