NLPHL Resources for Patients

Learn about nodular lymphocyte-predominant Hodgkin lymphoma and find resources recommended by GLOW patient advocates.

About nodular lymphocyte-predominant Hodgkin lymphoma (NLPHL)

Hodgkin lymphoma can be divided into two main types: nodular lymphocyte-predominant Hodgkin lymphoma (NLPHL) and classic Hodgkin lymphoma (cHL). While much is known about cHL, there is no known cause of NLPHL and there is a lot that is yet to be learned about it.

 Researchers currently understand that NLPHL…

  • Is rare, accounting for only 5-10% of Hodgkin lymphoma diagnoses
  • Is a slow-growing cancer
  • Occurs in patients of all ages, from children to older adults
  • Does not express the CD30 antigen, which is typically found in cHL
  • Is most often diagnosed in males and at early stages
  • Has a risk of late relapses and a risk for transformation to aggressive non-Hodgkin lymphomas more than 20 years after initial diagnosis

NLPHL Fact Sheets

More information about NLPHL and how it is diagnosed, staged, and treated can be found at the links below:

Lymphocyte-Predominant International Prognostic Score (LP-IPS)

The Lymphocyte-Predominant International Prognostic Score (LP-IPS) is a validated risk stratification tool created by GLOW.  The LP-IPS is meant to be used together with diagnosis and staging information to understand a patient’s risk level and whether or not  less aggressive (also called de-intensified or de-escalated) treatment may be appropriate. 

The LPS-IPS is calculated using 4 known factors that are related to survival and/or to transformation to aggressive lymphoma. The LP-IPS  assigns one risk point each for:

  • Age ≥45 years
  • HgB <10.5 g/dL
  • Stage III to IV
  • Splenic involvement

A score of 3-4 indicates that a patient has high risk NLPHL. Approximately 2.7% of NLPHL diagnoses are categorized as high risk when using the LP-IPS. 

NLPHL: What's in a name?

NLPHL has had several names over the years as researchers have learned more about how to best classify types of lymphoma. Below is a list of alternative names for NLPHL that you may see:

  • Nodular lymphocyte predominant B-cell lymphoma (NLPBL), lymphocyte-predominant Hodgkin lymphoma (LP or LPHL)
  • Poppema, lymphome Poppema, paragranulome de Poppema, paragranulome de Poppema et Lennert, lymphocytaire ou paragranulome de Poppema
  • La maladie de Hodgkin nodulaire à prédominance lymphocytaire (MHNPL), lymphome hodgkinien nodulaire à prédominance lymphocytaire (LHNPL)
  • Paragranuloma, nodular paragranuloma, lymphocyte-predominant Hodgkin’s disease (LPHD), nodular lymphocyte-predominant Hodgkin’s disease (NLPHD)
  • Historical names for NLPHL in academic literature have included: lymphocytic and reticulum cell, early Hodgkin’s disease, lymphoreticular medullary reticulosis, benign Hodgkin’s disease, reticular Lymphoma, indolent Hodgkin’s disease, and follicular lymphoma Type V Hodgkin’s disease type

There is still debate among lymphoma researchers about how to classify NLPHL. NLPHL and NLPBL are the two terms currently utilized by the international scientific community.

GLOW uses the term NLPHL based on its pathology and current scientific understanding.

Finding Support for NLPHL

There are several organizations around the world that provide informational, financial, clinical trials identification, and peer support for patients with NLPHL, their caregivers, and their families. Below are a few tips and resources if you are seeking support.  

Tips

  • Information about NLPHL is often located in general Hodgkin lymphoma resources, booklets, and fact sheets.
  • We recommend that you conduct searches using the terms “NLPHL” and “NLPBL.” In some countries, it may be better known as “Poppema.”
  • To find patient-oriented information, it may be helpful to search for “NLPHL Patient Resources” or similar phrasing to filter out academic publications.
  • Many lymphoma and cancer support organizations offer opportunities to connect via email, webinars, etc. and are not restricted to patients in a specific country. Several have translation services available if requested.

Lymphoma Support Groups

Many cancer support organizations provide support for patients with NLPHL.  Below are a few lymphoma-specific support organizations that provide extensive patient and caregiver support to patients worldwide.

Lymphoma Research Foundation (LRF)

LRF hosts a variety of in-person, remote, and written learning opportunities for patients, caregivers, and family members.  Several resources are available in multiple languages.  GLOW partners with LRF to provide NLPHL expertise, including LRF’s Hodgkin lymphoma fact sheet, which is reviewed and updated annually by GLOW NLPHL experts.

Website: https://www.lymphoma.org/ (Sign up for event and fact sheet updates via the form at the bottom of the home page!)

LRF resources: https://lymphoma.org/resources/

LRF helpline:helpline@lymphoma.org 

 

Leukemia and Lymphoma Society (LLS)

LLS maintains an extensive Hodgkin lymphoma booklet for patients and caregivers that is reviewed by a lymphoma specialist.

Website: https://www.lls.org/

LLS contact form:  www.lls.org/form/contact-us 

 

 

Lymphoma Action

Lymphoma action is based in the United Kingdom and has numerous resources for patients, caregivers, and family members.

Website: https://lymphoma-action.org.uk/

 

 

Lymphoma Australia

Lymphoma Australia provides resources for patients with lymphoma as well as educational opportunities for professionals.

Website: https://www.lymphoma.org.au/

 

 

Lymphoma Coalition

The Lymphoma Coalition maintains a database of lymphoma support organizations around the world.

Website: https://lymphomacoalition.org

Database of organizations: https://lymphomacoalition.org/member-organisation/

 

MyLymphomaTeam

MyLymphomaTeam is a social network for people living with lymphoma.

Website: https://www.mylymphomateam.com/

How You Can Help

  • Become an NLPHL patient or caregiver advocate by emailing GLOW@urmc.rochester.edu
  • Partner with us on NLPHL advocacy, education, and outreach efforts by emailing GLOW@urmc.rochester.edu​​
  • Learn about active NLPHL research
  • Fund NLPHL research
  • Follow GLOW on social media to get updates and join the conversation ​

ABOUT

The Global nLPHL One Working Group is committed to improving outcomes for all patients diagnosed with nodular lymphocyte-predominant Hodgkin lymphoma.    

JOIN

Interested in joining GLOW? Complete our Tell Us About You form!

CONTACT

GLOW@urmc.rochester.edu

 

 

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Images of NLPHL cells provided by Rachel Mariani, MD