Castleman Disease Treatment: The Search Continues

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Laura Mayben was living in a time of fear and uncertainty as doctors scrambled to figure out what was wrong with her. With most rare diseases, this time of unknown can last years before a proper diagnosis comes in.

After discovering enlarged lymph nodes and scar tissue, the doctors disregarded it as nothing to worry about. But then she started getting sicker.

On Mother’s Day, Laura was admitted into the Steele Creek Emergency Department after experiencing searing pain and dehydration. What followed was an uncomfortable 9 days that included a a colonoscopy, endoscopy, and a failed attempted needle biopsy. Then a doctor came in to save to save the day: Dr. Sridhar Pal with the Levine Cancer Center.

When she was released from the Emergency Department, she became Dr. Pal’s patient who was finally able to diagnose her and give this horrible situation a name and identity.

It’s called multicentric Castleman disease (iMC). The disease was discovered in the 1950s by Dr. Benjamin Castleman. This rare disease shares similarities to other cancers of the lymph nodes. When it comes to iMCD, several regions contain large lymph nodes which causes a multitude of problems. As of yet, there is no cure and scientists are unclear as to the cause. To learn more about this rare disease, click here.

Thus began the long journey in seeking the right treatment. Through CDCN’s Patient & Loved Ones Summit, the Maybens have been able to network with other Castleman patients.

Because it’s such a rare disease, treatment doesn’t always work and in addition, finding affordable insurance coverage for these long shot treatments is also a challenge. For that, Laura’s family has set up a GoFundMe page to raise the expenses.

Laura lost 60 pounds, gained a burning rash on her arm, walks with a cane, and can’t drive due to numbness in her right leg and hand. Even the chemotherapy isn’t enough to ease the symptoms.

She’s often thought about ending her treatment, but always ends up thinking about her husband and her son. Her son has come home from college to help out around the house. It’s her family that allows her the strength to push through.

“I spend time with my family, enjoy every day that I have as much as I am able, and press on,” said Laura in an interview with the gaston gazette. “You have a choice: Sit back and feel sorry for yourself, or you seize each and every day as a blessing.”


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