Castleman’s Disease Patient Stories

Carl’s story

Shortly following the passing of his wife of 24 years to ovarian cancer, Carl began experiencing night sweats, he lost weight, and he was constantly feeling tired. After he woke up one morning with severely swollen lymph nodes and flu-like symptoms, his doctor sent him for a biopsy. Within a few weeks, he was diagnosed with Multicentric Castleman’s Disease (MCD). Considering there was no approved treatment for MCD at the time of his diagnosis, Carl was given only 2 years to live. Determined to learn as much as he could about MCD, Carl began online research, and found a doctor who specializes in MCD. Carl began treatment, which is addressing his symptoms. He currently enjoys life as a retiree with his 4 children and his new wife, Deb.

Jim’s story

Being diagnosed with Castleman’s Disease is typically a lengthy process and “a puzzle” that may take several healthcare professionals from various specialties to figure out. For Jim, who was diagnosed with Unicentric Castleman’s Disease more than 25 years ago, the journey actually began with the diagnosis of another condition, and that may have saved his life.

Jim first began experiencing symptoms associated with reflux esophagitis (a condition in which the stomach contents leak backwards from the stomach into the esophagus). His physician performed a series of tests and diagnosed a hiatal hernia. Through the testing, his physician also found a small nodule, which was about the size of a pea. Additional scans confirmed this mass, and a needle biopsy was conducted. Unfortunately, pathology reports were unable to lead to a diagnosis, and a tissue biopsy was needed. Based on the results from the tissue biopsy, the pathologist was able to deliver a definite diagnosis of Unicentric Castleman’s Disease because of the “onion-shaped” design of the tumor. “When I was going through the series of testing, I was feeling concerned that there wasn’t a diagnosis available. But when I found my physician and was able to receive a diagnosis of Unicentric Castleman’s Disease, I became more enthusiastic that I could now receive the treatment that I needed.”

Because it is considered a rare disease, limited information about Castleman’s Disease was available at the time of Jim’s diagnosis. After extensive research, including a call to a leading academic institution in his area, Jim was referred to a physician with experience treating Castleman’s Disease. For Jim, being proactive with his diagnosis and taking an active role in his care was a top priority. “I knew that it was very important that I fully understand my disease and the symptoms that I was experiencing so that I would be able to share helpful information with my physician. I managed all of my own medical records, so I knew that I was fully prepared with the information my physician needed at each visit. Managing your records is something that I recommend to anyone going through a medical diagnosis – whether for Castleman’s Disease or any illness.”

After approximately 9 months, the nodule grew to approximately the size of a golf ball and was positioned on a nerve in his chest near his heart. After confirming through a biopsy that the mass was not cancer, the treating physician recommended surgery to remove the mass. Having educated himself about Castleman’s Disease, including treatment and management options, Jim felt that surgery was his best option, and has been symptom-free ever since.

Jim’s diagnosis of Castleman’s Disease led him to establish the International Castleman’s Disease Organization (ICDO), an organization committed to helping patients, caregivers, and healthcare professionals better understand and inform themselves about this rare autoimmune disease. By creating a global network, Jim has the opportunity to engage with other people who are committed to Castleman’s Disease from across the country and around the world. “My initial goal with establishing ICDO was to create centers of excellence within the United States for treating Castleman’s Disease. And now, we have an international community, with centers of excellence in Japan and Australia, too.”

Whether you have been living with Castleman’s Disease for many years or are recently diagnosed, it is important to know there is a community committed to this rare disease.

Jim's story “My family has been a tremendous source of strength throughout my diagnosis and management of my Unicentric Castleman’s Disease. Having a rare disease has many challenges, one being the lack of awareness about the disease and the support and resources available. That’s why it’s important for me to share my story to help others also affected by Castleman’s Disease.”

Hear from Carl about the path to his diagnosis, and how he learned about Multicentric Castleman’s Disease.

Recognizing Symptoms and Receiving the Diagnosis