Toolkit for Patients with HCL and HCL variant

A diagnosis of Hairy Cell Leukemia (HCL) can be overwhelming, but you are not alone. This guide is here to help you ask important questions so you can better understand your diagnosis and learn about your treatment and clinical trial options. You’ll also find a printable list of key questions to take to your doctor’s appointments. Being involved in your care is a great way to support your health and well-being.

How to Use This Guide

You can download this guide to your phone or print a copy by clicking here.

Bring the guide with you to your appointments.

Use it to jot down notes and keep track of your follow-up appointments.

Tip: You might want to ask a loved one to come with you to your appointments and help take notes.

Today’s Appointment

Be sure to write down the date and location of your appointment, as well as your doctor’s name.

Date of My Appointment:

Name of My Cancer Center or Hospital:

Name of My Doctor:

Questions I Can Ask My Doctor

Understanding My Diagnosis

· What is my exact diagnosis?

· Do I have hairy cell leukemia (HCL) or a variant of HCL?

· What tests confirmed my diagnosis?

The BRAF Mutation

· Was a BRAF V600E test conducted, and what were the results?

· Am I BRAF V600E positive or negative?

· What does this test result mean for my diagnosis, and how does it influence my treatment decisions?

My Blood Counts

· What are my white blood cell, hemoglobin, and platelet counts? What do these results mean?

· Do I need any additional blood tests, such as flow cytometry or immunohistochemistry?

Next Steps: Immediate Treatment or ‘Watch and Wait’?

· Do I need treatment right away, or can we wait and see for now? What reasons help us make this choice?

· How often will I need blood tests or check-ins during the wait-and-see (“watch and wait”) period?

· How do you decide when it's time to stop waiting and start treatment?

Understanding My Treatment Options

· What treatment options are available for me based on my current blood counts, test results, symptoms, and diagnosis?

· What benefits and risks should I think about when deciding between treatment choices, like cladribine versus pentostatin, or chemotherapy versus non-chemotherapy?

· What are the benefits and risks of combining chemotherapy, like cladribine or pentostatin, with other drugs such as rituximab?

· When should I consider using targeted therapies, like Vemurafenib (which is a type of BRAF inhibitor that doesn't involve chemotherapy), in my treatment plan?

· How does my medical history affect my treatment choices? Specifically, how do things like pregnancy or having diabetes, heart problems, or a weakened immune system change the options I have?

Managing My Treatment Side Effects

· What are some ways I can take charge to manage immune suppression and lower my risk of infections?

· Are there specific preventive medications, like antifungals or antivirals, that I should think about to keep myself safe from infections? Why or why not?

· How might this treatment affect my energy levels and my ability to do everyday activities?

Employment and Quality of Life

· Is it realistic to keep working full-time or part-time while I’m undergoing treatment?

· What would a reasonable timeline look like for going back to work?

· Do you have recommendations for pain medications or therapies that could make me more comfortable as I recover?

· Are there specific dietary or lifestyle changes you think I should consider to help boost my energy levels during this time?

Connecting with Experts

· If I believe it could be helpful, would you be willing to speak with an HCL Center of Excellence to discuss my treatment options?

· Could you please share your level of familiarity with the most recent guidelines and research in HCL?

Final Questions for My Doctor

· Is there anything I haven’t asked that I should know about my diagnosis or treatment?

· When is my next follow-up visit?

I HAVE FINISHED TREATMENT. WHAT’S NEXT FOR ME?

Congratulations on completing your treatment! As you move forward, remember to pay attention to your health and seek support when you need it. This guide will help you ask key questions, understand what comes next, and manage your follow-up care.

How to Use This Guide

You can download the list of questions to your phone or print a copy by clicking here.

Bring the guide with you to your appointments.

Use it to jot down notes and keep track of your follow-up appointments.

Tip: You might want to ask a loved one to come with you to your appointments and help take notes.

Today’s Appointment

Be sure to write down the date and place of your appointment, as well as the name of the doctor you saw.

Date of My Appointment:

Name of My Cancer Center or Hospital:

Name of My Doctor:

Understanding My Response to Treatment

· Are there specific symptoms I should monitor and report if they occur after treatment?

· How long will it take for my blood counts to return to normal?

· How will I know if my treatment was effective? What does remission mean?

· How often should I have follow-up blood tests or a follow-up bone marrow biopsy?

Managing Side Effects After My Treatment

· What short-term side effects might stick around, and how long could they last?

· What are the possible long-term side effects of the treatment?

· How can I keep myself safe from infections or other risks when my immune system is weak?

· Will I need to take medications like antibiotics or antifungals to prevent problems. Why or why not? And if I do, for how long?

My Overall HealthCare

· When should I receive routine vaccinations for pneumonia, shingles, RSV, flu, COVID-19, or tetanus?

· I have heard that I should see a dermatologist each year for skin screenings. What other specialists should I see and how frequently?

· How should my primary care doctor be involved in my follow-up care, and what information should they have about my HCL?  

Living Well After My Treatment

· Can I go back to my regular lifestyle, like working full-time, after my treatment?

· Are there any activities I should avoid, such as going to concerts or playing contact sports? If so, how long should I stay away from these activities?

· What lifestyle changes, including exercise and diet, can help keep me healthy?

· What information should I give to other healthcare providers, like dentists or specialists, about my history with Hairy Cell Leukemia?

· What types of support, like counseling, do you suggest during my recovery?

· Does my cancer center offer mental health resources or support groups? How can I access those resources?

Final Questions

· Is there anything else I should know right now as I recover from treatment?

· If I have new or returning symptoms before my next appointment, who should I reach out to, and what’s the best way to get in touch?

· What specialists should I be scheduling an appointment with?

· When is my next follow-up appointment?

Write down the date and place of your next appointment, along with the name of the doctor you’ll be seeing.

LIVING WITH HAIRY CELL LEUKEMIA

Living with HCL is different for everyone. This guide will help you focus on preventive care, keep up your quality of life, stay up to date on new advances, and get involved in the active HCL patient community.

You Can Make a Difference

After going through HCL treatment and recovery, many people find it meaningful to help others. Here are some ways you can make a difference.

Clinical Trials

Keep up with new research or clinical trials through the Hairy Cell Leukemia Foundation. If you ever need treatment again, you might consider joining a clinical trial.

Join the HCL Patient Data Registry

You can help important research by sharing your health experiences. Your information could lead to new discoveries for future patients. (The registry will begin accepting new patient enrollment in late January 2026.)

Support Others Through HCLF Programs and Campaigns

Patients often share their experiences in HCLF committees, roundtables, and seminars to help others better understand HCL.

Be a Guiding Light

Your story can inspire and give hope. Share your story or join the online community.

How to Use This Guide

Download this guide to your phone or print a copy by clicking here.

Bring the guide with you to your appointments.

Use it to write down notes and keep track of your follow-up appointments.

You might want to ask a loved one to come to your appointment and help take notes.

Today’s Appointment

Write down the date, location, and your doctor’s name for your appointment.

Date of My Appointment:

Name of My Cancer Center or Hospital:

Name of My Doctor:

Keeping Track of My Health

· How can I tell the difference between normal post-treatment symptoms and those that are a cause for concern?

· Are there any specific symptoms I should report right away?

· How do my blood counts help paint a picture of my overall health over time?

Prioritizing My Preventive Care

· How often should I get routine blood tests and check-ups?

· What specific tests (like bone marrow tests or imaging) should I have for long-term monitoring of my health?

· I want to make sure I am up to date on all the vaccines I need (such as pneumonia, shingles, RSV, flu, and COVID-19). Are there any vaccines that are not safe for me (like live vaccines)?

· I know I should see a dermatologist each year for skin checks. Are there other specialists I should see regularly? If yes, why?

· Are there any other preventive measures you think I should take?

Managing My Long-Term Side Effects

· Are there any lasting effects from my treatment that I should watch for?

· How can I help protect my immune system over time?

· What should I do about ongoing fatigue, infections, or other chronic symptoms?

Maintaining a Good Quality of Life

· What habits should I follow regarding nutrition, exercise, and sleep as an HCL survivor?

· Are there certain activities I should focus on or avoid?

· Does my cancer center have groups or other resources to help with emotional or mental health support?

Staying Informed About New Advances in HCL

· Should I be retested for new biomarkers or genetic mutations as research evolves?

· How often should I ask you about new treatment options, even if I’m feeling well?

Final Questions

· When is my next follow-up appointment?

Next Appointments

Write down the date, location, and doctor for your next appointment.