Learn More: T-Cell Lymphomas
At the time of Ben’s diagnosis, no one within the CITTL community had any idea what a T-Cell Lymphoma was. But one of the less talked about side effects of a cancer diagnosis is a newfound expertise on the given disease, so here is a synopsis of what we’ve learned so far…
Blood cancers alone are inherently rare, accounting for around 10% of yearly cancer diagnosis. T-cell lymphomas are then a far rarer segment of blood cancers, making up less than 15% of non-Hodgkin’s lymphoma cases, or around 10,000 cases each year. This makes T-Cell Lymphomas one of the rarest subgroups of cancer on earth. As you get into the particulars, the statistics get even more shocking. Hepatosplenic T-Cell Lymphoma (HSTCL), the cancer that took Ben’s life, will have less than 100 cases in any given year, with a five-year-survival-rate of around 25%.
What Makes T-Cell Lymphomas so dangerous.
In a healthy human body, your T-Cells are one of your adaptive immune system’s most relied upon lines of defense. They are essentially your body's law enforcement, as they are responsible for tracking down infected cells and regulating your immune response.
A T-Cell Lymphoma is a disease that turns these regulators of natural law against the host, in a sort of biological coup d’état. So not only do the t-cells stop doing their job, but they actually begin attacking the host’s remaining healthy cells.
Ben’s disease, Hepatosplenic T-Cell Lymphoma, is an especially aggressive strain that develops in the spleen and bone marrow. As of today, there is no known cure for the disease. But Ben’s mission was clear from the start, he wanted to make sure that the next kid with his diagnosis would have more targeted treatment options than he had. So, our mission remains the same as it was the day we were founded, to find a cure for T-Cell Lymphomas.
Where your to CITTL donation goes.
When Ben was first diagnosed, it took only a couple Google searches to find out that T-Cell Lymphomas were some of the most under researched cancers with little to no active funding. That is why we were so relieved when we found out that one of the most experienced doctors in this field was in our own backyard. Once Ben began treatment with Dr. Shustov, it was clear that the brilliant doctor had plans for expanding his research into groundbreaking territories, but was short on funding. From there it was an easy choice to partner up with Dr. Shutov and his team, starting our own fund that would go directly to them as they broke new barriers on T-Cell Lymphoma research.
Our partner, Dr. Andrei Shustov, has led global studies of new drugs that resulted in new treatments for patients in whom standard therapies failed. He is now leading studies that are changing approaches to treating patients with newly diagnosed T-cell lymphomas.
One of his top priorities is to help patients like Ben with the rarest type of all lymphomas – hepatosplenic T-cell lymphoma. He is now focused on looking at the biology of this lymphoma in order to identify new targets for therapy and to develop unique approaches that would cure this very challenging disease.
Links to more organizations focused on T-Cell Lymphoma
We are grateful to the following organizations for their ongoing commitment to research, awareness and education on TCLs.
Located in Seattle, Washington, Fred Hutch is dedicated to the elimination of cancer and related diseases as causes of human suffering and death.
The T-Cell Leukemia Lymphoma Foundation is a non-profit organization focused on: 1) providing education about these rare cancers to patients and family members; 2) assisting patients with treatment-related expenses through charitable funding; 3) allocating charitable funds to support such scientific research. Extensive research is vital to learning and understanding more about T-cell leukemias and lymphomas.
The Leukemia & Lymphoma Society is the largest nonprofit dedicated to creating a world without blood cancers. Since 1949, they’ve invested nearly $1.3 billion in groundbreaking research, pioneering many of today’s most innovative approaches.