Highlights from Our Understanding HCL Webinar: What Every Patient Should Know
Receiving a diagnosis of Hairy Cell Leukemia (HCL) can leave patients and families with more questions than answers. Why did this happen? Do I need treatment right away? What should I expect after treatment? And with so much new research emerging, how do I know what information applies to me?
Those were the questions at the heart of the Hairy Cell Leukemia Foundation (HCLF)'s recent educational webinar, Understanding Hairy Cell Leukemia, presented by Dr. James Blachly, a hematologist at The Ohio State University Comprehensive Cancer Center and medical advisor to the HCLF.
Designed for newly diagnosed patients, long-term survivors, caregivers, and anyone wanting a better understanding of HCL, the webinar offered a clear, patient-friendly overview of the disease, from diagnosis and treatment to long-term monitoring and the exciting future of HCL research.
One message came through repeatedly: there has never been a better time to be diagnosed with Hairy Cell Leukemia.
Understanding HCL
Hairy Cell Leukemia is rare, accounting for only about 2% of all adult leukemias, yet research over the past several decades has transformed how physicians diagnose and treat it.
One of the most important breakthroughs came with the discovery of the BRAF V600E mutation, found in nearly every case of classic HCL. As Dr. Blachly explained,
"The BRAF V600E mutation was found to be present in essentially 100% of cases of classical Hairy Cell Leukemia."
He noted that this is extraordinary because:
"It is almost unheard of that any cancer can be defined by a single genetic lesion."
That discovery has led to targeted therapies that are expanding treatment options and changing the future of HCL care.
Not Everyone Feels Sick at Diagnosis
One of the webinar's takeaways for many participants was learning that many people with HCL have no symptoms at diagnosis. Instead, the disease is often discovered during routine blood work, when a physician notices unexpectedly low blood counts.
Others may experience fatigue, repeated infections, or an enlarged spleen before a diagnosis is made.
Dr. Blachly also explained one of the unique biological features of HCL: low monocyte counts, or monocytopenia. These unusually low monocyte levels help explain why untreated patients sometimes develop infections that are uncommon in the general population.
Understanding these distinctive characteristics helps explain why diagnosing HCL requires more than a routine blood test and often includes a bone marrow biopsy and specialized laboratory testing.
Why Doesn't Everyone Need Treatment Right Away?
Perhaps the most important discussion of the webinar centered on a question nearly every newly diagnosed patient asks:
"If I have leukemia, why aren't we treating it?"
Dr. Blachly explained that treatment decisions are based not simply on the diagnosis itself, but on whether the disease is actually causing problems. Patients who feel well, have stable blood counts, and are not experiencing significant infections or an enlarged spleen may be safely monitored rather than treated immediately. Research has shown that treating HCL before treatment is truly needed does not improve long-term outcomes.
In fact, up to one in ten patients may not require treatment when they are first diagnosed. Instead, physicians carefully monitor blood counts, symptoms, and overall health until treatment offers a clear benefit.
To help patients understand when treatment is typically recommended, Dr. Blachly shared an easy rule to remember:
1,000 – 100 – 10
These numbers represent:
Absolute neutrophil count below 1,000
Platelet count below 100,000
Hemoglobin below 10 g/dL
He also reminded patients that treatment decisions are never based on laboratory values alone. Symptoms such as persistent fevers, chills, night sweats, significant fatigue, or an enlarged spleen are equally important parts of the overall picture.
What Happens Inside the Bone Marrow?
Many patients have experienced what their physician described as a "dry tap" during a bone marrow biopsy.
Dr. Blachly explained why this occurs.
Hairy Cell Leukemia often produces reticulin fibrosis, a type of scarring within the bone marrow. Because of this scarring, obtaining the liquid portion of the marrow can sometimes be difficult. Fortunately, unlike several other bone marrow disorders, this fibrosis is usually reversible once the leukemia has been successfully treated. Understanding what is happening inside the bone marrow helps explain many of the blood count changes seen in HCL and why recovery after treatment sometimes takes several months.
Treatment Today; and Where It's Heading
Dr. Blachly reviewed today's standard therapies, including cladribine, pentostatin, and rituximab, and discussed the growing role of targeted therapies such as vemurafenib, as well as promising clinical trials evaluating newer agents.
He shared his own perspective on current first-line therapy, explaining that he considers cladribine plus rituximab to be the current standard approach for most patients with classic HCL. Perhaps the most hopeful moment of the webinar came during the discussion of long-term outcomes.
Dr. Blachly reflected on how dramatically treatment has improved over the past several decades and said:
"I'm very hopeful that there are patients that I am treating currently in the frontline setting whom I will never see relapse."
For many patients and families, that statement captured just how far HCL treatment has come.
Living Well After Hairy Cell Leukemia
The webinar concluded by looking beyond treatment itself.
Because people with HCL are living longer than ever before, survivorship has become an increasingly important part of care.
Dr. Blachly encouraged patients to continue routine cancer screenings, stay up to date on vaccinations, protect their skin through regular dermatologic examinations, exercise regularly, and maintain healthy lifestyle habits.
He also offered reassuring advice for patients concerned about infection risk after treatment:
"Patients who have had Hairy Cell Leukemia also have an increased susceptibility to infections. That does not mean you need to stay isolated or avoid living your life. Instead, it means being thoughtful and using common sense."
Every Patient Can Help Advance Research
The webinar concluded by looking toward the future, not only through new therapies but also through a better understanding of the patient experience.
Dr. Blachly emphasized that researchers are asking broader questions than ever before:
How can we improve quality of life?
How can we better support people living with Hairy Cell Leukemia?
How can we better understand survivorship?
These are exactly the questions the Hairy Cell Leukemia Foundation Patient Data Registry is helping answer.
Every person who participates contributes to a better understanding of Hairy Cell Leukemia and helps shape the future of patient care worldwide.
Watch the Webinar
Whether you're newly diagnosed, currently receiving treatment, living in remission, or supporting a loved one with HCL, this webinar provides a comprehensive and reassuring overview of today's understanding of Hairy Cell Leukemia.
We invite you to watch the full recording and share it with family members, caregivers, and others who may benefit from learning more about this rare disease. View the webinar recording and materials here >> CLICK HERE