Providing Hope, Connection and Support for Hairy Cell Leukemia Patients and Caregivers

A hairy cell leukemia diagnosis can be a life-changing moment for families.

HopeConnectLearn is here to help you take control of your journey.

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No one wants to be told they have cancer. These three words can be defeating.

But if you or someone you know has been diagnosed with hairy cell leukemia, three simple words can make all the difference: HopeConnectLearn is an online community committed to keeping you informed and in-touch every step of the way.

From initial diagnosis to treatment paths, remission milestones and life after diagnosis, HopeConnectLearn is dedicated to ensuring all people impacted by hairy cell leukemia are empowered by knowledge, strengthened by action, and sustained by support.

While significant advancements have been made in the treatment of hairy cell leukemia, nothing takes the place of the power, inspiration, and connection that comes from community.

Join HopeConnectLearn on Facebook and take control of your journey.

https://www.facebook.com/HopeConnectLearn

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What is hairy cell leukemia?1

Hairy cell leukemia is a chronic and rare form of adult blood cancer. The malignancy is characterized by the overproduction of abnormal white blood cells, known as B lymphocytes (B cells), that accumulate in the bone marrow, liver and spleen.

Under normal conditions, B cells produce antibodies that help fight against infection and disease. In people with hairy cell leukemia, B cells undergo a malignant change that may compromise the body’s immune system.

The disease is called hairy cell leukemia because the abnormal B cells have thin projections that stick out of the surface like hairs. Unlike other blood cancers, hairy cell leukemia is indolent, meaning it develops slowly, often over many years.

What causes hairy cell leukemia?1

While the exact cause of hairy cell leukemia is not known, it is acknowledged that the DNA of B cells undergoes changes that affect normal cellular function.

Naïve B cells circulate in the blood and lymphatic system. If they encounter foreign substances (antigens), they migrate into lymph nodes, proliferate, and form the germinal center (GC). Here, important modifications of the B cells take place, including genetic mutations that specify which antibodies to produce in response to the antigens detected.

The process forms two types of cells: plasma cells that secrete antibodies to fight the infection immediately and memory B cells that can survive for decades and generate a fast antibody re-sponse in the case of re-infection.

Hairy cell leukemia is believed to develop when too many memory B cells are produced, which may lead to a decrease in red blood cells, plate-lets, and certain white blood cells (neutrophils). Your doctor may refer to this as “cytopenia”.

1000Number of people diagnosed with HCL in the US1-3

HCL is more common in men than women (4:1)

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How common is hairy cell leukemia?1-3

Hairy cell leukemia is a rare blood cancer

About 1000 new cases are reported every year in the United States

The median age at diagnosis is 55 years

Men are 4x more likely to be diagnosed with hairy cell leukemia

Over 90% of people with hairy cell leuke-mia will have normal life expectancy

What are the symptoms of hairy cell leukemia? 4-5

Abdominal discomfort Affected individuals may experience abdominal discomfort due to an abnormally en-larged spleen (splenomegaly).

Fatigue Hairy cell leukemia decreases hemoglobin levels, which can cause anemia and result in fatigue and weakness

Fever Hairy cell leukemia can compromise immune function, which may lead to recurrent in-fections and fever.

Weight loss Unintended weight loss is common in people with hairy cell leukemia. These people often have little or no appetite.

Bleeding or bruising Hairy cell leukemia can decrease platelet levels, leading to increased bleeding and bruising.

~40%of patients will relapse in 5-10 years after first treatment 1-3

78-92%5 year survival rate for HCL patients 1

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How common is relapse?While other cancers, such as lung, colon, breast and prostate cancer, have high relapse rates, hairy cell leukemia has a low to moderate relapse rate. About 40% of patients with hairy cell leukemia will relapse, even after 10 years of remission.1-3 And for others, the first line of treatment does not work well, a condition known as refractory hairy cell leukemia.

However, there are effective therapies to treat refractory or relapsed hairy cell leukemia.

How is hairy cell leukemia treated?While there is no cure for hairy cell leukemia (yet!), there are various therapies available for different stages of the disease. Your doctor will likely recommend a treatment strategy based on your diagnosis, extent of disease, personal health, and success of previous treatments.

Watchful waiting

For some patients with hairy cell leukemia, it is not always necessary to start treatment immediately after the diagnosis is confirmed. Because this cancer is indolent, meaning it progresses slowly or sometimes not at all, treatment can be delayed for certain patients.

In this case, you will likely have regular appointments with your doctor to monitor the progression of the disease. If you experience signs and symptoms of the cancer, a standard therapy may be recom-mended. The majority of people with hairy cell leukemia eventually need treatment.5

Standard therapies

Standard therapies are considered the first line of treatment for hairy cell leukemia. These include chemotherapy and biologic therapy.

Chemotherapy for hairy cell leukemia – consists of taking a single drug or several drugs in a set regimen to destroy or control hairy cell leukemia cells. Several chemotherapy drugs are available for hairy cell leukemia and are typically taken intravenously or orally.1

Biologic therapy for hairy cell leukemia – consists of drugs that make hairy cell leukemia cells more recognizable to your immune system. Once your immune system identifies these cells as intruders, your body can attempt to eliminate them. Several biologic therapies are available for hairy cell leukemia and are typically taken intravenously.1

If your hairy cell leukemia returns or if it does not respond to standard treatments, second line treat-ments are available.

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Relapse and refractory therapies You are likely to need further treatment if your hairy cell leukemia returns or does not respond to stan-dard therapies. This is called second line treatment. There are several effective therapies available to patients with relapsed or refractory hairy cell leukemia.1 The choice of treatment will depend on how long your hairy cell leukemia was in remission and/or on which treatment(s) you had before.

Chemotherapy and biological therapy can also be used as second line treatment for relapse and refractory hairy cell leukemia. However, you may receive different drugs or undergo a different treatment plan.1

Targeted therapy for hairy cell leukemia – consists of drugs or other substances that precisely identify and attack hairy cell leukemia cells or their cellular processes. Since the development and progression of hairy cell leukemia is associated with abnormal B cells, targeted therapies for hairy cell leukemia pinpoint specific molecular functions responsible for causing hairy cell leukemia. Several targeted ther-apies for hairy cell leukemia are available and are typically taken intravenously or orally.6

Clinical trials You and your doctor may decide that the best treatment route for your hairy cell leukemia is one being studied in a clinical trial. Clinical trials are research pro-grams conducted with patients to evaluate a new medical treat-ment or therapy. These studies are volunteer-based and follow an approved protocol created by investigators.

Clinical trials are the primary way that researchers find out if a new treatment, like a new drug, is safe and effective. Throughout the country, medical centers are conducting clinical trials to advance our understanding and treatment of hairy cell leukemia. In fact, many of the hairy cell leukemia treatments available today were discovered, tested and demonstrated in clinical trials.

Which treatment is right for you? Deciding the best course of treatment for your hairy cell leukemia can seem overwhelming. Before making a decision, take time to learn more about the disease, gather information and ask questions. Discuss all of your options with your doctor, family and support system. Having accurate information will help you make the right decision for you.

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10 questions to ask your doctor about hairy cell leukemia

Every patient’s cancer is unique. Talking openly with your doctor and care team is important to un-derstanding your specific situation and treatment options. Here you’ll find questions you can ask your doctor about your hairy cell leukemia diagnosis, treatment, and expectations to help prepare for your visit. Be sure to look it over in advance - it can help you remember questions to ask your doctor.

What are the symptoms of hairy cell leukemia?

Do you recommend treatment for my hairy cell leukemia at this time?

What treatment approaches are available?

Which of these treatment approaches would you recommend?

What is my long-term outlook with this treatment?

How is this treatment given?

How often must I receive treatment?

What are the side effects of this treatment?

What do I do if this treatment does not work?

What happens if my hairy cell leukemia comes back?

HAIRY CELL LEUKEMIA

Connect with other patients and caregivers

Hairy cell leukemia may be rare, but hundreds of people around the world are impacted by the disease.

Our welcoming and supportive online community connects you with hairy cell leukemia patients and their loved ones to provide hope when you’re going through a difficult time, unbiased information when you have decisions to make, and real conversations about everything in between.

Join HopeConnectLearn today. Visit www.hopeconnectlearn.com to learn more.

References

1. Troussard X, Cornet E. Hairy cell leukemia 2018: Update on diagnosis, risk-stratification, and treatment. Am J Hematol. 2017;92(12):1382-1390. doi:10.1002/ajh.2493

2. Grever MR, Blachly JS, Andritsos LA. Hairy cell leukemia: Update on molecular profiling and therapeutic advances. Blood Rev. 2014;28(5):197-203. doi:10.1016/j.blre.2014.06.003

3. Teras LR, DeSantis CE, Cerhan JR, Morton LM, Jemal A, Flowers CR. 2016 US lymphoid malignancy statistics by World Health Organiza-tion subtypes. CA Cancer J Clin. 2016;66(6):443-459. doi:10.3322/caac.21357

4. Wierda WG, Byrd JC, Abramson JS et al. NCCN Clinical Practice Guidelines in Oncology (NCCN Guidelines®). Hairy Cell Leukemia. V.2.2018. National Comprehensive Cancer Network®. 9-26-2017:1-23

5. Hairy Cell Leukemia Treatment (PDQ®) - Patient Version. National Cancer Institute (NCI). 4-6-2016:1-136. Maitre E, Cornet E, Troussard X. Hairy cell leukemia: 2020 update on diagnosis, risk stratification, and treatment. American Journal of

Hematology. 2019 Dec;94(12):1413-1422. doi: 10.1002/ajh.25653.

Disclaimer

The information in this brochure, including but not limited to, text, graphics, images and other material, is provided by Innate Pharma for educational purposes only and should not take the place of talking with your doctor or health care professional. No material in this brochure is intended to be a substitute for professional medical advice, diagnosing or treating a health problem or disease. Always seek the advice of your physician or other qualified health care provider with any questions you may have regarding a medical condition or treatment and before undertaking a new health care regimen, and never disregard professional medical advice or delay in seeking it because of something you have read in this brochure.

This information is intended for US consumers only.

© 2020 Innate Pharma, S.A. All rights reserved. US-NP-2000029 Last Updated 10/20

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