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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
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My mom past from this. She felt bad and her back hurt first. Cancer doctor said she had a tumor on her kidney that was well encased and all would be ok. I am convensed that she had the multiple myeloma then as well. The tumor was removed by kidney cancer doctor and she healed but continued to have pain and fatigue, loss of appetite but at 80 we knew she was always active, good blood pressure, heart good. She was always a little round German woman like the rest of her family. We were going to the Houston Cancer center for checkup, but some months later they decided to take an x=ray because she felt so bad. Nurse only took kidney area, then said they needed to take a body scan. Mom said they found lots of white spots in her xray. Weeks later she got a letter saying she had a cancer. 2 weeks later she called me and she was so weak she could hardly move and I called 911. Parametics could find nothing. They had a drive-by status at all hospitals, so I rushed her to Houston and she died in my car 2 times. The ER rushed her in and she died again and they all revived her. Fortunately, I had grabbed all her mail from doctors and they couldn't believe myeloma developed so quickly. Transfusions and her fragil veins were too much for her to continue treatments in ICU. I am hoping that when anyone has any illness, especially cancer to get another opinion. Medicare will alow 3. Specialist are not necessarily going to just rush around your body looking for more stuff. My case in point. I was sure my husbands mole was cancer and the cancer dermatologist said no. I ordered her to remove it because he had skin cancer before. Tests proved it was cancer. That Dr. is no longer at MDAnderson. Another case, is both my legs were trapped between 2 stacks of lumber and torn ligaments and tendons resulted. The leg doctor said surgery! A second opinion was therepy first, then see what happens as he looked at 6 MRI and felt nothing looked urgent. Now, I am better, so I could continue to see if therepy is fruitful then see what I can live with. Then decide how much I can tolerate or have surgery. He said my injuries may or may not get better, but my legs werent going to fall off. I was once told by my family to always get more opinions. Sometimes one person can see something that another doesn't. A surgeon is a surgeon and that is what they do everyday. That's how they make a living. Long term care is not. But you should not delay the 2nd opinion either. Just saying.
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2 Reactions@germangal My condolences on the loss of your mother. You're very right that we need to be our own advocates for health. Understanding our conditions and educating ourselves to make an informed decision for treatment is so important. I cannot expect my medical team to know me better than I know myself! Reliable sources of information and education are crucial.
Ginger
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1 ReactionThanks so very much for sharing your story. We also have Dr Dispenzieri and we live everything about her. This journey is not easy for patient or caregiver, but people like you that share your story is so comforting. Appreciate everything you are doing.
I am also trying to get a support group started in Duluth Minnesota. 😘👍
Does myeloma always have to have an m spike ?
In a short answer, yes. Patients with multiple myeloma have too much of an abnormal M protein in their blood. But finding the M protein in blood results doesn’t always mean multiple myeloma. It can be a blood condition such as MGUS where M protein is found in the blood but at a lower level.
Did your doctor recently find M protein in your blood work?
https://www.healthline.com/health/m-protein
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1 ReactionI've connected with Ilse personally, meeting her in person and having phone conversations. Her empathy, expertise, and insight into the journey with Myeloma make her a pivotal support. She's become a personal connection for us during our travels from PA to Rochester. Ilse is an invaluable resource at Mayo!
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2 ReactionsSneaky and full of surprises are excellent descriptors for MM!
Language can help us understand and cope with the diseases we are helping our bodies conquer!
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