Smart Patients Get Smart Care™

The World’s Leading Authority for Chronic Lymphocytic Leukemia Patients

October 2023 CLL Bloodline

In science and medicine, information is constantly changing and may become out-of-date as new data emerge. All articles and interviews are informational only, should never be considered medical advice, and should never be acted on without review with your health care team.

Over the course of a year of monthly meetings, The CLL Bloodline will teach the BASICS needed to understand CLL, bring news, help with the acronym and new vocabulary, and offer simple fun quizzes.

MONTHLY QUIZ:  The spleen is important in CLL. All the following are true EXCEPT:

  1. The white pulp of the spleen acts as an immune organ, much like a giant lymph node.
  2. The red pulp acts to rid the body of old red blood cells and platelets and recycles their contents.
  3. The spleen can serve as a backup to the bone marrow by releasing blood cells into the circulation.
  4. One can live without a well-functioning spleen or even after its total removal.
  5. 30% of people have a tiny 2nd spleen called a splenule or accessory spleen that grows if the spleen is removed.
  6. Removal of the spleen is sometimes done prophylactically in CLL to lower the risk of infections.

The correct answer is #6 The spleen helps the body remove certain common “encapsulated” bacteria that can cause pneumonia, meningitis and other infections and its removal is associated with more serious infections. 

NEWS:

• CLL Society’s brand new Medicine Cabinet is now available. The cabinet holds 9 of the most common FDA-approved medications that are used to treat CLL / SLL. As you navigate through the cabinet you will find printable non-branded medication sheets that explain everything you need to know about each drug in an understandable way. Join us on Monday, Oct. 23rd for the webinar The CLL / SLL Medicine Cabinet: Understanding Your Available Treatment Options.

• CLL Society’s Community Profile Questionnaire has been launched. Please support this questionnaire to help us better understand the community that we serve as a nonprofit organization to support more targeted and effective programs and resources. Identifiable information will be kept confidential and not disclosed outside of CLL Society.

• This past May, CLL Society presented Celebrating Long Lives, our annual 5k run/walk fundraiser. We raised over $50,000 this year, but with your help we can do even better! If you work for or have contacts at a company that may be interested in sponsoring the event next year, please let us know at [email protected]. We’ll let you know as soon as a date is set, but we expect it will be May 2024.

• CLL Society’s 2022 Annual Report is now available to read online and we are incredibly grateful for your partnership that made it all possible. Read about the meaningful impact we are having together.

THE BASICS: In an earlier Bloodline, we discussed factors that go into deciding your choice of therapy. This month we explain Targeted Therapies that are generally our best choice. This gets detailed, but the crucial point is that “targeting” drugs work.

Targeted Therapies (TT) are drugs that interfere with specific “targets” important to cancer cell growth and survival. In CLL these include monoclonal antibodies (mAbs) that attack a specific protein found on the cells’ surface. This protein may be found on some normal cells but not on most cells. Examples include rituximab, ofatumumab (now rarely used), and obinutuzumab that target CD20 found only on CLL and normal B cells. Another TT are TKIs or tyrosine kinase inhibitors that inhibit enzymes such as BTK which is blocked by ibrutinib, acalabrutinib, zanubrutinib and pirtobrutinib (experimental), or PI3K blocked by idelalisib and duvelisib. Both BTK and PI3K are part of the B cell receptor (BCR) pathway that the cancer has become “addicted” to and is critical to its survival. Blocking it turns off the messages the cancer receives to “live long and proliferate.” Venetoclax and the experimental lisaftoclax are not TKIs. They turn back on apoptosis or programmed cell death, leading to rapid killing of the CLL cells. CLL cells had turned off that death pathway to improve their survival. Unlike chemotherapies, TT do not damage DNA or target all fast-growing tissues, cancerous or not. The important point is that because TT are “targeted,” they tend to cause less collateral damage. They are often newer, more effective and expensive than “chemo” that was discussed in the last Bloodline.

WORD/ACRONYM OF THE MONTH:  IMMUNOTHERAPY THERAPY

Immunotherapy Therapy uses our immune system to fight cancer and are made from living organisms. They include approved mAbs (monoclonal antibodies) such as rituximab and obinutuzumab (Gazyva), and experimental CAR-Ts (genetically modified T cells) such as liso-cel, and Bispecific T- cell Engagers (BITE) monoclonal antibodies such as epcoritamab. It may also be called biological therapy or targeted therapy.

The CLL Society is invested in your long life. Please invest in the long life of the CLL Society