Castleman Disease Overview

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Learn About Castleman Disease

What is the definition of Castleman Disease?
Castleman disease is a rare condition that is characterized by an abnormal growth of multiple cells in a single lymph node or multiple lymph nodes (depending on the type of disease), causing them to enlarge. There are two main types of Castleman disease: 1) Unicentric Castleman disease (UCD) affects a single lymph node, usually in the chest or abdomen and is the most common form of the disease. 2) Multicentric Castleman disease (MCD) affects multiple lymph nodes and has two subtypes which are commonly associated with having been infected with the human immunodeficiency virus (HIV): 2a) Human herpes virus type 8 (HHV-8-associated MCD) 2b) Human herpes virus type-8 (HHV-negative or idiopathic MCD ), which is also known as Kaposi sarcoma-associated herpesvirus.
What are the alternative names for Castleman Disease?
There are several alternative names for Castleman disease, including angiofollicular lymph node hyperplasia, giant lymph node hyperplasia, and lymphoid hamartoma. Castleman disease may also be abbreviated to CD.
What are the different types of Castleman Disease?

Common conditions include: Multicentric Castleman Disease (MCD), Unicentric Castleman Disease (UCD)

What are the causes of Castleman Disease?
While the exact cause is unknown, unicentric Castleman disease is currently believed to be caused by genetic mutations and inflammation. Multicentric Castleman disease can be caused by having been infected with human herpesvirus 8 (HHV-8) and human immunodeficiency virus (HIV). However, when the human herpesvirus 8 is not present, then the cause in unknown, in which case the disease is referred to as being idiopathic (of unknown cause) multicentric Castleman disease.
What are the symptoms of Castleman Disease?
Patients with unicentric Castleman disease may not experience any symptoms, and the disease may only be detected when a single enlarged lymph node is discovered in the neck, chest, or abdomen during an examination. Some patients with unicentric Castleman disease may have symptoms similar to those in multicentric Castleman disease, such as fatigue, unexplained weight loss, nausea, skin rash, fever, night sweats, anemia, an enlarged liver and spleen (hepatosplenomegaly), and high levels of immune factors in the blood (hypergammaglobulinemia). Symptoms of multicentric Castleman disease include multiple areas of enlarged lymph nodes, unexplained weight loss, fatigue, loss of appetite, shortness of breath, nausea and vomiting, skin rash, fever, night sweats, anemia, an enlarged liver and spleen (hepatosplenomegaly), peripheral neuropathy (pain and tingling in arms, hands, legs, and feet), and high levels of immune factors in the blood (hypergammaglobulinemia).
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What are the current treatments for Castleman Disease?
Treatment for Castleman disease depends on the type and severity. Treatment for unicentric Castleman disease involves surgery to remove the affected lymph node, which can cure the disease. If the lymph node is in an area that cannot be operated on (unresectable), then medication and ionizing radiation therapy (radiotherapy) may be used to destroy the affected lymph node. Treatment for multicentric Castleman disease depends on the severity and type and whether the patient is infected with the human immunodeficiency virus (HIV), human herpesvirus 8 (HHV-8), or both. A treatment plan may include medications to stop the cell overgrowth (immunotherapy; siltuximab , rituximab , IL-6 , sirolimus, or anakinra); chemotherapy; corticosteroids, such as prednisone, to control inflammation; antiviral drugs to block human immunodeficiency virus (HIV) or human herpesvirus 8 (HHV-8) or both; and bone marrow transplant (for severe disease).
Who are the top Castleman Disease Local Doctors?
Razelle Kurzrock
Elite in Castleman Disease
Dr. Razelle Kurzrock
Hematology Oncology | Hematology | Oncology
Elite in Castleman Disease
Dr. Razelle Kurzrock
Hematology Oncology | Hematology | Oncology
9200 W Wisconsin Ave, 
Milwaukee, WI 
414-805-0505
Languages Spoken:
English
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Accepting New Patients

Razelle Kurzrock is a Hematologist Oncology specialist and a Hematologist in Milwaukee, Wisconsin. Dr. Kurzrock is rated as an Elite provider by MediFind in the treatment of Castleman Disease. Her top areas of expertise are Castleman Disease, Multicentric Castleman Disease (MCD), Lymphoid Hyperplasia, Adult Soft Tissue Sarcoma, and Tissue Biopsy. Dr. Kurzrock is currently accepting new patients.

Sudipto Mukherjee
Elite in Castleman Disease
Dr. Sudipto Mukherjee
Hematology | Oncology
Elite in Castleman Disease
Dr. Sudipto Mukherjee
Hematology | Oncology

Cleveland Clinic Main Campus

10201 Carnegie Avenue, 
Cleveland, OH 
866-223-8100
Languages Spoken:
English, Bengali, Hindi
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Offers Telehealth

Sudipto Mukherjee is a Hematologist and an Oncologist in Cleveland, Ohio. Dr. Mukherjee is rated as an Elite provider by MediFind in the treatment of Castleman Disease. His top areas of expertise are Multicentric Castleman Disease (MCD), Castleman Disease, Myelodysplastic Syndrome (MDS), Acute Myeloid Leukemia (AML), and Bone Marrow Aspiration.

 
 
 
 
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Peter Voorhees
Elite in Castleman Disease
Dr. Peter Voorhees
Hematology | Oncology
Elite in Castleman Disease
Dr. Peter Voorhees
Hematology | Oncology

Atrium Health Levine Cancer Institute (Hematology)

1021 Morehead Medical Drive, Building 2, Suite 60201, 
Charlotte, NC 
980-442-4363
Languages Spoken:
English
See accepted insurances
Accepting New Patients
Offers Telehealth

Peter Voorhees is a Hematologist and an Oncologist in Charlotte, North Carolina. Dr. Voorhees is rated as an Elite provider by MediFind in the treatment of Castleman Disease. His top areas of expertise are Multiple Myeloma, Smoldering Multiple Myeloma, Relapsed Refractory Multiple Myeloma (RRMM), Bone Marrow Transplant, and Bone Marrow Aspiration. Dr. Voorhees is currently accepting new patients.

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What are the support groups for Castleman Disease?
There are several online, local, national, and international support groups for Castleman disease, including the following: Castleman’s Connect - https://www.castlemansconnect.com/connect-with-castleman-community/ Castleman Disease Collaborative Network - https://cdcn.org/patients-loved-ones/find-support/ Rare Connect: Castleman’s Disease - https://www.rareconnect.org/en/community/castleman-disease/members
What is the outlook (prognosis) for Castleman Disease?
The outcomes (prognosis) for unicentric Castleman are good as the disease can generally be cured with surgical removal of the affected lymph node. The outcomes (prognosis) for multicentric Castleman disease are varied as, in some patients, the disease can be characterized by periods of stable disease (not progressing) that can last for months or years. Other patients with multicentric Castleman disease may experience episodes of severe symptoms that may improve without treatment or respond to treatment, only to recur. Patients who are positive for the human immunodeficiency virus (HIV-positive) generally have poor outcomes (prognosis), as they have an increased risk of developing a severe form of multicentric Castleman disease that can progress rapidly, causing death within a period of weeks.
What are the possible complications of Castleman Disease?
Patients with unicentric Castleman usually do not experience any complications and can be cured after surgical removal of the affected lymph node. Complications for patients with multicentric Castleman disease may include life-threatening infections or organ failure. Patients with multicentric Castleman disease and human immunodeficiency virus (HIV)/ acquired immunodeficiency syndrome (AIDS) may experience severe, rapidly progressing disease and death. In rare instances, an affected lymph node in a patient with multicentric Castleman disease may form close to a blood vessel, causing an obstruction or aneurysm (ballooning of a blood vessel) requiring surgery. Having either type of Castleman disease can increase the risk of developing lymphoma (cancer of the lymph nodes).
When should I contact a medical professional for Castleman Disease?
If you discover an enlarged lymph node on the side of the neck, collarbone, under the arm, or in the groin area, or if you experience fatigue, unexplained weight loss, fever, or a persistent feeling of fullness in the chest or abdomen, make an appointment with your doctor as soon as possible.
How do I prevent Castleman Disease?
Since patients with human immunodeficiency virus are at an increased risk of developing human herpesvirus 8 (HHV-8) multicentric Castleman disease (HHV-8-associated MCD), avoiding infection with human immunodeficiency virus by practicing safe sex, limiting sex partners, avoiding injected street drug use and the use of dirty needles, and taking the pre-exposure prophylaxis pill (PrEP) can help to prevent HIV infection and reduce the risk of developing multicentric Castleman disease.
What are the latest Castleman Disease Clinical Trials?
A Phase II, Single-Arm Open-Label Multi-Center Study of Ruxolitinib in Previously Treated Idiopathic Multicentric Castleman Disease
A Phase II, Single-Arm Open-Label Multi-Center Study of Ruxolitinib in Previously Treated Idiopathic Multicentric Castleman Disease
Enrollment Status: Recruiting
Publish Date: October 10, 2025
Intervention Type: Drug
Study Phase: Phase 2

Summary: The research study is being done to look at the effects of ruxolitinib in adults with idiopathic Multicentric Castleman Disease (iMCD) that has not gotten better from taking siltuximab or tocilizumab, or who cannot take those medications.

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Collection of Blood, Bone Marrow, Tumor, or Tissue Samples From Patients With HIV Infection, KSHV Infection, Viral-Related Pre-Malignant Lesions, and/or Cancer
Collection of Blood, Bone Marrow, Tumor, or Tissue Samples From Patients With HIV Infection, KSHV Infection, Viral-Related Pre-Malignant Lesions, and/or Cancer
Enrollment Status: Recruiting
Publish Date: October 01, 2025

Summary: BACKGROUND: * A number of important scientific advances can be made through the study of blood, bone marrow, tumor, or other tissue samples from patients with HIV infection, infection with Kaposi s sarcoma associated herpesvirus (KSHV), infection with other oncogenic viruses, or cancer. * This protocol provides a mechanism to affect a variety of such studies. OBJECTIVES: -Acquisition of serum, cir...

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What are some Advocacy Organizations?
castleman-disease

The Castleman Disease Collaborative Network (CDCN) is a global initiative dedicated to accelerating research and treatment for Castleman disease and revolutionizing biomedical research.