UCD: The average length of survival after UCD diagnosis is greater than 10 years, and life expectancy is usually not changed by UCD.
MCD: The 5-year overall survival rate of HIV negative (presumed HHV8-negative) MCD was 65% in a 2012 case series published prior to the approval of anti-IL-6 therapy (1). A study in 2021 found a 75% 5-year overall survival rate among iMCD patients (2). There is reasonable hope that the survival rates are currently greatly improved due to the new breakthroughs in treatment (such as anti-IL6 blockade). The CDCN is currently leading a global patient research study to collect data to update these numbers. Patients can enroll at www.CDCN.org/ACCELERATE
- Dispenzieri A, Armitage JO, Loe MJ, et al. The clinical spectrum of Castleman’s disease. Am J Hematol. 2012;87(11):997-1002.
- Cohen A, et al. Clinical characteristics, treatment patterns, and overall survival of real-world patients with idiopathic multicentric Castleman disease. Journal of Clinical Oncology. 39, no. 15_suppl (May 20, 2021) 7048-7048.