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MONTHLY QUIZ: Concerning the reason we got CLL:
- CLL can be familial, but that is rare.
- CLL incidence is increased in those exposed to Agent Orange in Vietnam and elsewhere.
- CLL incidence is increased in those exposed to radiation from Chernobyl.
- CLL is linked to benzene exposure.
- All of the above.
- 1, 2, and 3 are correct.
The correct answer is #6. CLL mostly occurs episodically with no known cause but occasionally CLL runs in families. Agent Orange is a recognized risk for CLL and exposed veterans who develop CLL may be entitled to compensation. For a long time, radiation was not considered a risk due to the lack of increase of CLL after Hiroshima, but we now know from the Chernobyl experience, that Hiroshima was the exception due to the very low baseline incidence of CLL in ethnic Japanese. Benzenes and other solvents may increase the risk of other blood cancers, but there has been no link found with CLL. Usually, we just don’t know why we got CLL.
- On July 16, the CDC updated their guidelines for those vaccinated against COVID-19 to give clearer instructions to the immunocompromised including CLL patients. They now reflect what CLL Society has been saying for months: even if vaccinated still follow all the protective rules such as masking and social distancing: https://cllsociety.org/2021/07/cll-societys-recommendations-for-covid-19-vaccinated-chronic-lymphocytic-leukemia-cll-patients-based-on-the-cdc-updated-considerations-for-people-who-are-immunocompromised-and-on-the-underl/
- Registration is open for our August 26thwebinar, Revisiting PI3K Inhibitors for the Treatment of CLL: Are They Living Up to Their Promise? with Dr. Ian Flinn.
- CLL Society wants all CLL patients and caregivers to be prepared in case of exposure to COVID-19 and know exactly what their next move will be. If you test positive for COVID-19, time is of the essence so a little pre-planning can go a long way. Our Pre-Exposure COVID-19 Planning Checklist, a Household Quarantine Plan, and an Action Plan for Confirmed COVID-19 Infection can help, found here: https://cllsociety.org/2021/07/covid-19-plan-checklists-for-chronic-lymphocytic-leukemia-cll-preparing-for-pre-and-post-covid-19-exposure/
- CLL Society is proud to announce that Sept. 1st will be the first World CLL Day. We want your help in increasing awareness. If you would like to provide a short video or quote for the CLL Society, please reach out to Nicole Kamphuis at firstname.lastname@example.org for more details.
BASICS: Clinical Trials Phases – This applies to all trials, including those for CLL and COVID-19
Phase 1: Is the drug safe and what’s the best dose? There is no placebo arm. These are small trials. While there are officially designed to check for safety, clearly efficacy is also looked for.
Phase 2: Does the drug work? Is it effective? Medium size trials where there is no placebo or control arm. There can be different arms with different combinations or sequencing of the drugs.
Phase 3: Is it better than the standard of care? These are large trials where there is a randomization to either a control arm of standard care or the new therapy. Only when there is no “standard of care,” there might be a placebo arm. This is never the case in CLL. Ask if the trial allows “crossover” so that if one progresses on one arm, one can transfer to the other. That’s important because it allows patients to get the benefit of the best treatment, no matter to which arm they were randomized.
Phase 4: What else do we need to know about this approved drug or vaccine or treatment?
WORD OF THE MONTH: Heterogeneity
Heterogeneity is the quality of being diverse in character or content. CLL is a heterogeneous disease as we are all different in how our disease progresses and is managed. In clinical trials and in statistics, the concept of heterogeneous populations is critical. Trials must compare “apples to apples.” One easy example is that you can’t compare relapsed CLL patients to frontline CLL patients from different trials.
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