When it comes to rare diseases, much of what we learn comes from patients sharing with each other and their doctors. Case in point is UVA Cancer Center’s deep dive into what role vitamin D may play in large granular lymphocyte (LGL) leukemia, as recent research has found a connection between vitamin D and cancer generally.
The research began at the urging of a patient and was funded through donations to the LGL Leukemia Research Fund, which is supported primarily by patients and other individuals.
A Patient’s Journey
Christine Weart Sachs, MD, like many others with LGL leukemia, went through a long journey toward a diagnosis. She realized she wasn’t healing as quickly as she used to and began seeking answers. After being treated for a toe infection, she noticed her lab work showed that she was neutropenic — a low concentration of neutrophils, a type of white blood cell that fights infection.
As a physician herself, she knew something wasn’t right. After a few more doctor visits, she received a diagnosis of LGL leukemia. She came across a scientific paper about LGL leukemia by Thomas Loughran, Jr., MD, who first discovered the disease. The paper described treatments for LGL leukemia.
She started corresponding with Loughran, joined the LGL Leukemia Registry, and avidly researched all she could about the condition.
“When I was diagnosed, there wasn’t a lot of information, and funding and research locations were limited,” she said. “I began to research why people get the disease.”
Her search led her to wonder about vitamin D and its role in the immune system. She talked to her endocrinologist about bumping up her vitamin D intake and increased her daily dosage of vitamin D3. Within a few months, her neutrophil counts had doubled.
Sachs posted her experience in the Facebook support group for LGL leukemia to find out if others have tried this and had a positive response. A few patients responded with similar stories. She emailed Loughran to tell him the news and share the research she was following. Discussions between Sachs and Loughran led to investigations into the effect of vitamin D on immune cells in LGL leukemia patients as part of LGL leukemia research program at UVA.
Vitamin D and Cancer Research
Vitamin D is being extensively researched for many health conditions, including types of leukemia and immune system disorders. With the LGL Leukemia Registry, a large patient base with this rare disease, and extensive disease expertise, the Loughran Lab at the UVA Cancer Center is uniquely positioned to research the effects of vitamin D on LGL leukemia.
UVA researchers Kristine Olson, Ph.D., and Paige Kulling, a graduate student that recently completed her Ph.D. research in the Loughran lab, have been working on vitamin D research since 2015, as a result of discussions with Sachs about her experience. Since Olson initiated these studies, they have published four papers related to vitamin D and cancer, specifically its role in blood cancers and LGL leukemia.
Up to this point, their research has used calcitriol, the active form of vitamin D, in LGL leukemia cell lines and primary cells donated by patients in the LGL Leukemia Registry. They aimed to uncover what happens to these cells when given vitamin D supplements. “We want to figure out how it works so that we can target pathways to make vitamin D more effective,” Kulling said.
Here are a few highlights of their findings, which have been presented at several international conferences:
- LGL leukemic cells highly express vitamin D receptors, meaning they’re primed for immune response.
- Vitamin D reduces the production of pro-inflammatory cytokines. This means your immune system cells are sending out less inflammatory substances to the rest of your body, making you feel better.
- Vitamin D seems to work by reprogramming cells to a less inflammatory state, which may slow or stop some of the drivers of LGL leukemia.
What This Means to You
You never want to start a supplement without your doctor’s knowledge and consent. Some supplements can negatively interact with your other treatments, and too much of some can cause other side effects. Vitamin D is a fat soluble vitamin and as such can be stored in a person’s fat cells and build up in the body to cause toxicity when overdosing occurs. Patients taking high doses of supplement therapy should have levels monitored through blood tests. These same blood tests can be used to test for any vitamin deficiencies that could warrant taking supplements. Maintaining healthy vitamin levels is always a balance and one that your doctor can help you reach.
Vitamin D has been shown to be relatively safe for most people, but research into the use of vitamin D and dosage recommendations specific for patients with LGL leukemia has not yet been done in human trials. Finding the proper dose still involves some trial and error.
Sachs continues to take cyclosporine A and vitamin D. She works closely with her doctors to ensure her doses are working.
Donate to the LGL Leukemia Registry
If you’ve been diagnosed with or are suspected of having LGL leukemia, consider donating a sample to the LGL Leukemia Registry. Learn More
Philanthropic donations to the LGL Leukemia Research Fund provide the Loughran Lab at the UVA Cancer Center with the flexibility to initiate and continue novel research projects that directly affect patient care. These studies are also critically dependent on patient samples that are provided to the LGL Leukemia Registry, “Our research wouldn’t be possible without participation in the LGL Leukemia Registry,” Olson said.
Talk to your doctor for more information about LGL leukemia, or to find out more about the registry.