Advanced treatment offers remission from rare blood cancer

FOR IMMEDIATE RELEASE
Media Contact: Allison Peters
Phone: 708-216-6140
allison.peters@luhs.org

MAYWOOD, IL – After a series of unexplained symptoms left him exhausted by everyday activities, John Nyhoff, 69, of Darien, IL, is celebrating his remission from a rare and complex blood cancer known as systemic light chain (AL) amyloidosis, a rare condition that can be life-threatening and is often misdiagnosed.

Amyloidosis is the build-up of abnormal proteins, called amyloid, in various tissues or organs, which can lead to life-threatening organ failure. There are many different types of amyloidosis, most of which are not cancerous. However, AL amyloidosis, the most common type, is a cancer of the bone marrow. It usually affects the heart, kidneys, skin, nerves and liver. In AL amyloidosis, cancerous plasma cells produce misfolded antibodies that cause damage to organs. This protein can cause low blood counts, heart failure, kidney failure, nerve damage and liver damage.

Starting in the summer of 2020, Nyhoff began to experience extreme fatigue, lightheadedness, limb weakness, low blood pressure and severe weight loss. Following a liver biopsy at Loyola University Medical Center in April 2021, he was diagnosed with AL amyloidosis.

"The worst thing during the process is, you know something's wrong, but nobody can identify what in the world it is," said Nyhoff. "And you go from one doctor to another doctor and go through this daisy chain of 'we don't know what you have, but we're sure of what you don't have.'"

Early diagnosis and treatment are crucial for positive outcomes. Fortunately, just six days after his diagnosis, Nyhoff met with Patrick Hagen, MD, a hematologist/oncologist at Loyola Medicine, who provided a detailed explanation of his condition and an immediate action plan. The amyloid protein produced by the cancer cells in Nykoff’s bone marrow had affected his liver, kidneys and gastrointestinal tract.

"I think one of the advantages about coming to a place like Loyola that has a specialized amyloidosis center is that we're able to recognize the disease early, manage it effectively and safely help patients achieve deep remission," said Dr. Hagen. "Which significantly increases the likelihood their organs will recover."

After completing 24 weeks of chemotherapy, Nyhoff achieved remission and has since transitioned to a simplified monthly treatment regimen. Though he will require biannual blood tests to monitor his condition, he is now able to live his life without restrictions.

"For many patients, we can eliminate up to 99% of cancerous plasma cells, allowing them to remain in remission for 5, 10 and sometimes even 20 years," said Dr. Hagen. "At an average diagnosis age of around 70, we can potentially offer a decade or more of remission, effectively providing them with a functional cure."

Physicians at Loyola are working to educate physicians and patients about amyloidosis through a series of educational lectures and outreach efforts. By helping health care providers understand the early signs and symptoms, they aim to improve diagnosis rates, which subsequently leads to better patient outcomes. Multidisciplinary teams, including cardiologists, hematologists, nephrologists, neurologists, surgeons, pathologists and gastroenterologists, collaborate closely to provide comprehensive care. Additionally, Loyola partners with amyloidosis support groups, including hosting an annual gathering that fosters a vital sense of community for patients navigating this rare disease.

Following treatment, Dr. Hagen says that not only is Nyhoff’s amyloidosis under control, but his affected organs have recovered. Nyhoff is grateful he can keep up with his grandchildren and travel. “The only thing that impedes our travel is our little dog.”

Watch Nyhoff's story here: