Florida Chef Finds Expertise to Manage Rare Disease, Get His Life Back

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Florida Chef Finds Expertise to Manage Rare Disease, Get His Life Back

By
Joel Streed

May 16, 2016

When 67-year-old Stefan Gyorkos of St. Augustine, Florida, noticed swelling in his feet several years ago, he didn't think much of it. After all, as chef at a local golf and country club, he is on his feet for hours at a time.

That seemingly innocent ailment, however, would eventually lead to a series of tests and ultimately a diagnosis of a rare disease known as amyloidosis for which he required a bone marrow transplant at Mayo Clinic's Florida campus.

Amyloidosis occurs when a substance called amyloid builds up in the organs. Amyloid is an abnormal protein that is usually produced in the bone marrow and can be deposited in any tissue or organ in the body. Severe amyloidosis can lead to life-threatening organ failure. While there's no cure for the disease, the symptoms often can be managed, reducing the production of amyloid protein.

Relatively few oncologists or hematologists have experience in treating amyloidosis over the course of their careers. When Stefan discovered he had this rare condition, he looked to Mayo Clinic for answers.

Diagnosis and a treatment plan

"When I went to my dermatologist for treatment of a toenail fungus, she noticed my swollen feet and suggested I get it checked out by my family doctor, which I did," says Stefan. "When urine and blood tests she ordered showed a very elevated protein level, I was referred to a nephrologist for a kidney biopsy. I was told I had a potentially serious condition and was immediately referred to Mayo Clinic, where I was seen by an oncologist within a few days of my referral."

After a full evaluation, Stefan received a diagnosis and was informed he'd need chemotherapy treatment and possibly a bone marrow transplant, a procedure which wasn't without its risks. Stefan's care was managed by Sikander Ailawadhi, M.D., a Mayo Clinic hematologist/oncologist with expertise in treating amyloidosis patients.

During July 2014, Stefan began a series of what was expected to be six to eight chemotherapy cycles. But after two cycles, he was told the treatments weren't working and that he'd need a bone marrow transplant to potentially improve his condition.

"My advice to anyone facing a life-threatening disease like mine is to stay positive and trust in the treatment that your doctors recommend to you." – Stefan Gyorkos

"Mr. Gyorkos' condition was serious, and I knew we'd have to undertake aggressive treatment to give him the best chance of getting his disease under control," says Dr. Ailawadhi. "Fortunately, our team is experienced in treating rare disease like amyloidosis, so we came up with a treatment plan that we felt confident would have a good chance of controlling his disease."

Stefan was admitted to the hospital and had his bone marrow transplant on Christmas Day 2014.

He had a difficult recovery period for a week or two immediately following the transplant, which is a common occurrence for bone marrow transplant recipients, since their immune system is compromised for a period of time. Eventually his immune system stabilized, and he was well enough to be discharged from the hospital.

Managing a difficult condition

Over the past year Stefan has been checked regularly by Dr. Ailawadhi, and his protein levels continue to slowly improve to a manageable level, although his disease is not yet is full remission.

"I'm feeling a lot better than I did before, so I recently went back to work as a chef on a part-time basis and resume my life as best I can," Stefan says. "I'm also attending the Amyloidosis Support Group meetings at Mayo Clinic, which allows me to interact with people who are going through the same experience as me."

Today, Stefan's disease is being carefully managed and he is doing well, enjoying his work as a chef and spending time with his wife, two children and three grandchildren.

"My advice to anyone facing a life-threatening disease like mine is to stay positive and trust in the treatment that your doctors recommend to you," Stefan says. "And I also believe that you are in the best hands when you come to Mayo Clinic for your care. They have the expertise that many other hospitals don't have when it comes to treating rare and difficult to treat conditions like mine."

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