From OHC

July 12, 2023

Mr. Carl Guenther’s life changed forever in 2000 when his high school sweetheart, Susan, was diagnosed with stage 4 ovarian cancer. “That’s when I became a caregiver,” he said. “I tell people that sometimes, caregiving can be as hard as being the patient. It wears you out physically, mentally, emotionally, and even spiritually.”

To cope, Carl leaned heavily on his background in music, putting on numerous concerts at local churches to raise money for Relay for Life. He also found solace in the support of OHC. “If I had to pick one word to describe OHC, it would be care. From the doctors to the receptionists and everyone in between, everyone cares so much. You’re not just a number there,” he said.

As Susan’s health declined, she implored Carl to seek answers for his own health concerns—unexplained shortness of breath and burning sensations in his legs. It was during one of their routine chemotherapy visits to OHC that Carl requested an evaluation from Evan Z. Lang, MD, MS, medical oncologist, and hematologist at OHC.

Tragically, Susan’s battle with cancer came to an end in 2004, but Carl’s commitment to honoring her wishes led him to take proactive steps in seeking a diagnosis for his condition. Little did he know that this pursuit would lead him on a remarkable path of discovery and resilience.

Dr. Lang’s examination of Carl’s lungs showed an astonishing number (more than a dozen) of nodules in his lungs. And although he was relieved that the biopsy results came back benign, it meant that he still didn’t have any answers – eventually, his lymph node biopsy yielded the diagnosis of Castleman disease, a rare and poorly understood illness. Castleman disease is a benign (non-cancerous) disorder that involves an overgrowth of cells in the body’s lymph nodes, typically found in the chest and abdomen. Multicentric Castleman disease carries a poor prognosis.

Armed with newfound knowledge and a history of advocating for Susan, Carl reached out to a Castleman disease expert in Little Rock, Arkansas. The doctor immediately got in touch with Carl and invited him to be a part of their new clinical trial for a drug called Sylvant, an immunotherapy drug.

Undeterred, Carl took it upon himself to advocate for the reopening of the trial. “I told them I would get it started back up again. I didn’t know exactly how yet, but I was determined.” His persistence paid off as the clinical trial resumed shortly thereafter.

Over the following years, Carl would make a total of 193 trips to Little Rock for treatments, with the FDA finally granting approval for the drug in 2018. Since then, he has been going to OHC for his treatments every month. His success led to the publication of his case in Therapeutic Advances in Hematology in 2022.  Dr. Lang, the lead author, praises Carl’s contribution to the development of a new treatment for Castleman disease.  “Carl is such a positive man, he never gave up and recently celebrated his 300th treatment with a cake he shared with our team,” notes Lang.

“As a clinician, I have learned so much during his treatments and follow-up visits.” As a result, Dr. Lang has written a review article on Castleman disease which is co-authored by Dr. Frits van Rhee, a renowned medical expert on this condition.  It will be submitted to the American Journal of Hematology this summer. “This definitely will have a bigger impact, helping to educate other doctors about this disease, how it presents, and what treatments are available,” shared Dr. Lang.

In the face of so much uncertainty, Carl embraced a powerful mantra: I.R.D.M. Depending on the situation, the acronym can mean “It Really Does Matter” or “It Really Doesn’t Matter.”

“Wherever you are, grab a piece of paper and make two columns. On one side write ‘I.R.D.M.’, and on the other side, write ‘I.R.D.M.’ again. On the left side, write down everything that truly does matter in life, like family, friends, and faith. Then, on the right side, list everything else.” He went on to suggest using this exercise during everyday events, like getting stuck in traffic. Does it really matter? Probably not.

Just recently Carl’s second wife, Debbie, was also diagnosed with cancer, but he knows she is in good hands with OHC and the decades-long support from Dr. Lang. “I know oncology can be a difficult field, but the doctors at OHC never wavered. It’s remarkable,” said Mr. Guenther.

Throughout his own journey and the new one he faces with Debbie, Carl finds solace and purpose in his music. He continues to play the piano, one of his favorite hobbies, and has even released CDs to raise funds for the American Cancer Society—a testament to his never-ending desire to give back.

Top image: Carl Guenther and his wife, Debbie, celebrating Carl’s 300th treatment

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