A 30-year Multiple Myeloma Cancer Journey at Mayo Clinic

During a 1991 hospitalization for pneumonia in her hometown of Barrington, Illinois, Ilse Hein, received an unexpected and frightening diagnosis: multiple myeloma, a rare complex cancer of the bone marrow.

“I refused to believe I had cancer and attributed the frequent infections, colds and tiredness to being overworked,” Ilse says.

Soon thereafter, encouraged by her local physician, Ilse traveled to Rochester, Minnesota, and spent a week at Mayo Clinic. There, her diagnosis was confirmed and compounded by more bad news: The care team discovered she also had incurable nonalcoholic liver disease. One week later she underwent major surgery.

“The news of two incurable diseases was extremely frightening,” Ilse says. “But my hematologist and hepatologist at Mayo Clinic explained the diseases and helped ease my fear with their knowledge, empathy, kindness and openness.

Angela Dispenzieri, M.D., a Mayo Clinic hematologist , says she recognizes the difficulty of facing a diagnosis as a patient, despite the increase in positive prognoses.

“A diagnosis of multiple myeloma can be terrifying, but patient outcomes have improved substantially in the past two decades,” says Dr. Dispenzieri. “These simple facts are easy for a physician to say but sometimes hard for a patient to hear or to absorb during this traumatic period.”

After years of surveillance at Mayo Clinic, Ilse's team of physicians recommended she participate in a new drug trial. Fortunately, Ilse’s multiple myeloma improved as a result of the trial. It was at that time she decided it was time to help other multiple myeloma patients.

With the help from Mayo Clinic multiple myeloma specialists, Ilse started the first multiple myeloma support group in her home country of Austria. She also founded the European Myeloma Platform.

As a myeloma patient advocate, Ilse is also working on a new project called Multiple Myeloma Mayo Mentorship, a face-to-face patient program she hopes will give incoming patients a more personal connection with someone who has been in the same spot. 

“My goal is to give patients and caregivers information, hope, courage, understanding, and to provide emotional support,” Ilse says.

“Patients supporting patients is invaluable,” Dr. Dispenzieri adds. “When another patient shares his or her experiences, they are more than words. The gifts a veteran patient — a patient like Ilse— offer include hope, reassurance and a friendly, knowing ear.”

During a return to Mayo Clinic for a checkup, she ran into yet another obstacle: breast cancer. After more surgery, she’s once again winning the battle with the help of her Mayo Clinic providers. Today that team includes myeloma, liver disease and breast cancer experts.

Despite a long, hard fought battles with multiples myeloma, followed by secondary breast cancer, Ilse remains passionate to help other multiple myeloma patients and their caregivers:

“Choose a knowledgeable cancer team and specialist you trust and connect with. I wholeheartedly recommend Mayo Clinic. You will need your family, friends and your cancer team to be on your side through your cancer journey. Seek support from others, and never ever give up.”
You can meet @ilse right here on Mayo Clinic Connect. This ensures she can help more patients embarking on the same multiple myeloma journey that she started more than two decades ago.

Join Connect members discussing the diagnosis, treatment, and living with multiple myeloma in the Blood Cancers & Disorders support group.

Ilse's original story can be seen on Sharing Mayo Clinic