Support for Patients with Hairy Cell Leukemia

ASK AN EXPERT FORUMS/WEBINARS DATA REGISTRY online community CLINICAL TRIALS

A diagnosis of hairy cell leukemia, as with other rare diseases, can be lonely. The patient’s doctor, family members and friends may have had little if any exposure to this type of cancer. The patient may feel isolated. We provide education and support for patients and families around the world. We respond to patient questions and make referrals to hairy cell leukemia experts and clinical trials. We also provide educational webinars and forums for patients to learn about hairy cell leukemia treatment and research.

You can scroll this page to explore our patient support programs or use the navigation above (Ask an Expert, etc.)

Ask an Expert about Hairy Cell Leukemia

We want all patients and family members affected by hairy cell leukemia to have the information they need to gain comfort and be supported through treatment and beyond. Through our Ask an Expert program, we receive phone calls and emails each week from patients around the world. Their stories and needs differ - some have recently been diagnosed with hairy cell leukemia or have relapsed, others are in remission. We leverage the knowledge and experience of our community and international network of experts to support these patients in their journey and empower them to make informed decisions with their doctors.

In 2018, our Ask an Expert program directly supported over 130 patients from 13 countries and 5 continents.

Do you have a question about hairy cell leukemia?

When a patient with hairy cell leukemia contacts us, we read and listen closely and ask questions to make sure we understand their needs. We provide facts, resources, and referrals to support them in making health care decisions. We consult the most current research as well as our network of internationally recognized advisors and HCL experts to tailor our response to each inquiry.

Whenever possible, we encourage patients to seek medical consultation and treatment at one of our Centers of Excellence.

Our Ask an Expert program does not replace the patient's doctor or caregiver. We will not diagnose disease or prescribe treatment by email or phone, and we strongly encourage patients to consult closely with their doctor on all medical matters. The resources we provide are intended for informational purposes and are not a substitute for professional medical advice, diagnosis or treatment.

how does it work?

Please contact us using the button below (Ask Your Question) or by calling our office at +1.224.355.7201.

We receive inquiries from patients around the United States and abroad. We maintain confidentiality and will never share your contact information or health information without your consent.

You will receive a reply via info@hairycellleukemia.org, usually within 3-5 business days.


Forums and Webinars for Patients

We hold regular educational meetings and webinars for patients with hairy cell leukemia to learn from HCL experts and connect with other people affected by HCL.

Forums

In June 2019, we launched a new series of in-person forums for patients and families. These forums are held 3 to 4 times each year in different locations, providing more opportunities for everyone affected by hairy cell leukemia to stay up to date on the most current research and treatment for HCL. Each forum features a speaker from a Center of Excellence with critical expertise in HCL. These forums are shorter than the annual patient seminar.

November 13, 2019: Hairy Cell Leukemia Patient Forum (La Jolla, CA, USA)

Wednesday, November 13th from 5:00 to 6:30 pm

Venue: Scripps Clinic, Anderson Outpatient Pavilion, Torrey Pines Road, La Jolla, CA (Cancer Center Conference Room, Bldg. 10710)

Speaker: Dr. Alan Saven, Scripps Clinic

Registration will open in October. Email us to receive notification when registration opens for this patient forum.

September 28, 2019: Hairy Cell Leukemia Patient Forum (London, United Kingdom)

This forum is being held jointly by the Royal Marsden Hospital and University Hospital Southampton. The Hairy Cell Leukemia Foundation is delighted to provide a grant to support this effort and we encourage all interested patients and caregivers to attend if able.

Saturday, September 28th from 11:30 am - 4:30 pm London time

Venue: The Royal Marsden Education and Conference Centre, Stewart’s Grove, Chelsea, London, SW3 6JJ

This forum is free. Places are limited and advance registration is required. Register online through the Royal Marsden’s website. >>

July 17, 2019: Hairy Cell Leukemia Patient forum (New York, NY, USA)

We were thrilled to have Dr. Martin Tallman from Memorial Sloan Kettering Cancer Center speak to us about the history of discoveries in HCL and current advances in HCL treatment. A big thank you to everyone who attended. You can view a forum transcript here.>>

 

Webinars

Our webinar series provides opportunities to learn about diverse topics such as current research in hairy cell leukemia, HCL treatment and quality of life issues.

October 26, 2019: Understanding Hairy Cell Leukemia

Saturday, October 26th

8:00 to 10:30 am Eastern time / 5:00 to 7:30 am Pacific time

2:00 to 4:30 pm Italy/France time / 1:00 to 3:30 pm UK time

Confirmed Speakers:

  • Dr. Michael Grever, The Ohio State University Comprehensive Cancer Center-The James; and

  • Dr. Robert Kreitman, National Institutes of Health

Pre-registration will be required. Email us to receive notification when registration opens for this webinar.

September 10, 2019: Understanding HCL Variant

12:00 to 1:00 pm Eastern time

Guest speaker: Dr. Farhad Ravandi-Kashani, University of Texas - MD Anderson Cancer Center

View materials from this webinar, including a recorded presentation with synced audio and slides and a transcript of the presentation and Q&A session.>>

March 25, 2019: Hairy Cell Leukemia: What’s New?

Dr. Robert Kreitman from the National Institutes of Health (NIH) spoke to us about distinguishing classic HCL from the variant form, HCL treatment, and ongoing clinical trials.

View the transcript and slides from this webinar.

 

annual Patient Seminar

The seminar is generally held each year in conjunction with our conference for healthcare professionals. Leading experts in HCL who attend the conference also participate in the patient seminar as speakers and presenters.

2019 Patient Seminar

The 2019 Patient Seminar will be held as a webinar only on October 26. Please see the section on webinars above for details.

To explore presentations and audio recordings of past seminars, visit:

2018 Patient Seminar - New York, NY, USA

2017 Patient Seminar – Columbus, OH, USA

2016 Patient Seminar - Heidelberg, Germany (materials unavailable)

2015 Patient Seminar – Chicago, IL, USA

2014 Patient Seminar – London, England

2014 Patient Seminar – Houston, TX, USA

2013 Patient Seminar – New York, NY, USA


Hairy Cell Leukemia Patient Data Registry

Why is a Registry Important for Hairy Cell Leukemia (HCL)?

Hairy cell leukemia is a rare disease. Patients with HCL are diagnosed and treated by many different doctors around the world. This makes it difficult for researchers to identify common factors that may help them better understand hairy cell leukemia.

We have invested in the development of a comprehensive HCL Patient Data Registry to provide researchers the resources to better understand the complications, treatment outcomes, disease subtypes, comorbidities and epidemiology in patients with HCL.

How will the Registry Make a Difference?

Our Registry is a critically important tool that will enable researchers to study hairy cell leukemia in ways not previously possible given the rarity of the disease. Through the Registry, we will cooperate and collaborate with patients, doctors, and institutions around the world to collect HCL patient data. The Registry will help researchers identify new trends in patient outcomes, discover previously unknown complications of the disease and design clinical trials for new therapies. 

How Can You Get Involved?

More than 400 patients have already chosen to participate in the Registry by sharing their journey with HCL. We are very grateful for their collaboration.

To maximize the impact of the Registry, we need as many patients as possible to participate.

 To participate in the Registry, we encourage you to complete the form using the button below. A member of the Patient Data Registry team at The Ohio State University will contact you to answer any questions you may have and explain the enrollment process.

We maintain confidentiality and keep your information secure.


keyboard_image_patientcommunity.jpg

Online Community for Patients and Families

Connect, learn and support other patients

This is an online community for patients and family members. Whether you are newly diagnosed, have recently relapsed, or are in remission, it helps to connect with others who understand your experience. Through this community, we hope you will ask questions, learn from other patients and share your own story.

How can I join the community?

You must register in order to participate and view the discussion. The button below will take you to the community platform. Click “Not Registered?” to create an account. Registration is easy. You will enter your first and last name, email address, user name and password. Your user name is the name that will appear in the community when you post or comment.

Once you’ve registered, you will be taken to the community platform. It looks like this:

top_page_patient_community.png

You can browse the community using the categories on the right side of the page or by reading through recent posts to the left.

Ready to post? Use the "Ask" space to ask a question or share a story. We encourage you to assign a category or categories to help other users find your post.

categorize_bottom.png

Want to change how you receive notifications? Click “Your Account” to adjust your settings and preferences. By default, you will receive email notifications when other users respond to your questions or comments. However, you can change this in your settings. You can also subscribe to categories to receive email notifications when there is activity in a topic that interests you.

HCLF staff will monitor the community to ensure a respectful and supportive platform for all participants. Inappropriate or disrespectful language will not be tolerated and individuals who abuse this platform will be removed. This community is for individuals affected by hairy cell leukemia to connect with others. Posts that promote products or businesses, whether or not they are health care related, will be removed.


Clinical Trials for Patients with Hairy Cell Leukemia

Clinical trials are carefully controlled research studies, and are necessary to develop and study ways to improve treatment and quality of life for patients with hairy cell leukemia. Clinical trials may be available for patients at any stage of HCL. Your eligibility for a clinical trial depends on a variety of factors such as whether you have HCL or HCL variant, your stage of disease, your age and gender and the type of treatment, if any, that you’ve already received.

We encourage you to discuss clinical trials with your doctor and healthcare team to consider the availability of a trial for your unique diagnosis, treatment history and needs.

As you review your options with your doctor, you will want to understand the purpose and length of a given clinical study; potential benefits and risks; costs of the study, including any charges you will be responsible for; your responsibilities and limitations during the trial, including travel requirements; and whether you will continue to see your own doctor during the trial.

Clinical Trials at hcl centers of excellence

We encourage you to review and discuss the ongoing clinical trials below with your doctor to identify whether there may be a study that could work for you. We will continue to add information about new studies as they are available. You are welcome to contact us at info@hairycellleukemia.org for additional information.

Cladribine and rituximab for patients with once-relapsed HCL

Purpose: To achieve complete remission without minimal residual disease, to prevent relapse.

Eligibility: HCL after one course of either pentostatin or cladribine. Need for retreatment due to abnormal blood counts, growing lymph nodes, painful spleen or infections.

Contacts at the National Institutes of Health (NIH):

Multicenter phase 2 study of the bruton’s tyrosine kinase inhibitor pci-32765 (ibrutinib) for treatment of relapsed hairy cell leukemia

Purpose: Determine the response rate of HCL after 32 weeks of single-agent ibrutinib treatment.

Eligibility: Adults with classical hairy cell leukemia or the hairy cell leukemia variant who require treatment.  Classical hairy cell leukemia patients must have received prior purine nucleoside analogue treatment (cladribine or pentostatin) or be unable to receive it.  Anyone with the hairy cell leukemia variant is eligible whether or not they have had prior treatment.

Participating Sites: The Ohio State University, National Institutes of Health Clinical Center, Karmanos Cancer Institue, Mayo clinic, and M D Anderson Cancer Center

Contact at The Ohio State University:

Rituximab combined with pentostatin or bendamustine for HCL variant (HCLv) or multiple relapsed HCL

Purpose: To achieve complete remission without minimal residual disease, to prevent relapse.

Eligibility: HCLv with or without prior treatment, or HCL with at least 2 prior treatments; Treatment required due to abnormal blood counts, growing lymph nodes, painful spleen or infections.

Contacts at the National Institutes of Health:

Combining vemurafenib cobimetinib and/or obinutuzumab for treatment of HCL

Purpose: Combine the BRAF inhibitor, vemurafenib, with the MEK inhibitor cobimetinib and/or the anti-CD20 antibody obinutuzumab to achieve deep, complete remission for HCL patients who relapse after completing standard chemotherapy treatment with cladribine or pentostatin. 

Eligibility: Eligible patients in Italy must meet one of the following criteria: 1) they have already received two courses of chemotherapy (with cladribine or pentostatin) or one course of chemotherapy that was followed by an early relapse (within 2 years of treatment); or 2) they cannot receive chemotherapy treatment (e.g., due to age (>70 years), active infections or important comorbidities); or 3) they experienced major toxicities due to chemotherapy. 

Contact at the University of Perugia, Italy:

A Phase II study of the BRAF inhibitor, vemurafenib, plus obinutuzumab in patients with previously untreated HCL

Purpose: Although HCL patients experience excellent responses to initial purine analog based chemotherapy (e.g., cladribine or pentostatin), relapses are not uncommon and the disease remains incurable. There is a need for novel therapies for HCL patients. To this end, we are conducting a phase II clinical trial combining the BRAF inhibitor, vemurafeinb, and anti-CD20 antibody, obinutuzumab, in patients with previously untreated HCL to achieve a deeper molecular response with more favorable side effect profile and durable remissions.

Eligibility: Adult patients, ≥18 years old, with histologically confirmed classical HCL and who have not received any prior therapy for the disease. Patients must meet the treatment initiation criteria as defined by ANC ≤1.0, OR Hgb ≤10.0 OR PLT ≤100K. Patients must have at least one of these indications.

Contact at Memorial Sloan-Kettering Cancer Center:

  • Jae Park, MD 212-639-4048

 

ClinicalTrials.gov

You may want to explore www.ClinicalTrials.gov, a registry of federally and privately supported clinical trials in the United States and around the world. This website is a service of the U.S. National Institutes of Health (NIH). Once on the www.ClinicalTrials.gov website, you can enter “hairy cell leukemia” in the “Condition or Disease” box and click “Search” for a list of relevant trials. You can also specify a “Country” to narrow your search.