If you’ve read Come Back Tomorrow, you know that Will has Angioimmunoblastic T-cell Lymphoma (AITL), which is a rare form of blood cancer. September is Blood Cancer Awareness month, so I thought I’d share some information with you, not only about Will’s cancer, but about blood cancers in general.
Fast Facts
- Every 3 minutes, someone in the U.S. is diagnosed with a blood cancer; more than 1.3 million Americans are living with or in remission from a blood cancer.
- Although they are the 3rd leading cause of cancer deaths in the U.S., many people don’t know the impact of the blood cancers – leukemia, lymphoma, and myeloma.
- More than 1/3 of blood cancer patients do not survive five years after diagnosis.
What is AITL?
Angioimmunoblastic T-cell lymphoma (AITL) is a rare form of non-Hodgkin lymphoma, which is a group of related malignancies (cancers) that affect the lymphatic system (lymphomas). Lymphomas are cancer of white blood cells (lymphocytes) and can be divided depending on the type of cells, B-lymphocytes (B-cells) or T-lymphocytes (T-cells); AITL is a T-cell lymphoma. The lymphatic system functions as part of the immune system and helps to protect the body against infection and disease.
AITL is characterized by the transformation of a T-cell into a malignant cell. Abnormal, uncontrolled growth and multiplication (proliferation) of malignant T-cells may lead to enlargement of a specific lymph node region or regions; involvement of other lymphatic tissues, such as the spleen and bone marrow; and spread to other bodily tissues and organs. A key and differentiating aspect of AITL is dysfunction of the immune system, which can lead to a variety of symptoms. Affected individuals may develop a rash, persistent fever, unintended weight loss, and tissue swelling due to the accumulation of fluid (edema). The exact, underlying cause of AITL is not fully understood.
The incidence of AITL in the general population is unknown. It is estimated to account for 1-2 percent of all people with non-Hodgkin lymphoma. Some reports state the AITL occurs slightly more often in men than women, but others state the ratio is 1:1. Most people develop AITL in their 60s and 70s. The disorder can occur in younger adults and, although rarely, has also been reported in children.
Treatment
Therapies used to treat individuals with AITL include corticosteroids, watch and wait, single-agent chemotherapy and multi-agent chemotherapy. Since AITL is typically considered an aggressive form of lymphoma, multi-agent chemotherapy is often a first-line treatment (as it was in Will’s case). Although many individuals initially experience a remission, most will eventually experience a relapse (Will relapsed twice prior to the start of the story in Come Back Tomorrow).
One promising therapy for the treatment of AITL is the use of high-dose chemotherapy followed by stem cell transplantation. Researchers are evaluating the safety and effectiveness (efficacy) of high-dose therapy with certain chemotherapeutic drugs, possibly in combination with radiation therapy and/or other treatments, followed by stem cell/bone marrow transplantation to help restore healthy bone marrow (for further explanation, read “Sign up to donate bone marrow” below).
If you want to know more, the source article is here: https://rarediseases.org/rare-diseases/angioimmunoblastic-t-cell-lymphoma/
What can I do?
Support a blood cancer organization: The Leukemia & Lymphoma Society (LLS) is the world’s largest voluntary (nonprofit) health organization dedicated to funding blood cancer research and providing education and patient services. They are a wonderful organization to support: https://www.lls.org/
Sign up to donate bone marrow: A bone marrow transplant (BMT), also called a stem cell transplant, is the replacement of the stem cells that differentiate into all the different types of blood cells in your body. To make sure your body doesn’t reject the transplant, the cells you receive must be a match for you, that is, for certain markers your cells carry. For patients with a blood cancer, finding a match can be the difference between life and death, and 70% of patients don’t find a match within their own family.
If you’re between 18 and 60, you can sign up for the bone marrow registry. All you have to do is fill out some paperwork online, then they send you a kit and you swab some cells from the inside of your cheek with a Q-tip and you send it back to them. That’s it. Then about two months later you’re on the registry.
One in 540 registry members will go on to match a patient, and get to save someone’s life. It takes a little time and I’m sure it’s inconvenient, but to that person, YOU are the difference between life and death. No one else can give them what they need, and without you, they might not make it. What an incredible gift to be able to give someone, and what a horrible tragedy that 20% of patients who need a match don’t find one in time. If you can find it in your heart, sign up for the bone marrow registry. It’s a simple thing to do, and it could mean everything to a patient and their family. There are several websites, but I registered through https://bethematch.org/. There’s lots of information on their site and they’ll answer any questions you might have.