In 2003, Kathy Wilson, a former high school French teacher, was diagnosed with multiple myeloma at the age of 55. Six months later, she was diagnosed with amyloidosis, a rare disease that can occur in some multiple myeloma patients.

“Back in 2003, very few doctors knew what amyloidosis was, had ever seen it, or treated it. I dare say that a lot of doctors had never even seen the word or read anything about it,” stated Wilson.

Amyloidosis is a disease that affects organs such as the heart, liver and kidneys. It is caused by the accumulation of proteins in these organs. A form of amyloidosis is associated with multiple myeloma and can have an impact on treatment options (please see the related Beacon news article for more information on multiple myeloma-associated amyloidosis).

Leading up to Wilson being diagnosed with myeloma, she first started experiencing ankle swelling and remembered being surprised about it because she was quite active as a teacher and worked out regularly at the gym.

The symptoms crept up so slowly that at first, she did not associate them with anything out of the ordinary. “You take a mental note of it, but it’s not bad, not bad enough for you to go to the doctor for it,” she said of the symptoms.  “You just kind of ignore it, and it goes away. So, some of the early symptoms might be missed even by the patient. Not until something actually hits you with a two-by-four do you go, ‘Whoa, this is not normal.’”

Further complicating her diagnosis, the onset of Wilson’s symptoms coincided with menopause. As she suffered with swollen ankles and heart palpitations, she assumed she was simply experiencing symptoms of menopause.

Both her physician and a cardiologist recommended she avoid salt and elevate her feet to reduce the swelling in her legs. It was not until she saw her gynecologist and received some routine blood work that her doctors began to suspect something was amiss.

Wilson’s serum protein levels were low and her cholesterol, which had always been normal, was very high, both indications of kidney disease. She was referred to a nephrologist. She was diagnosed with nephrotic syndrome, a kidney disorder that results in too much protein being excreted in the urine, leading to swelling throughout the body (edema).

Her nephrologist did further testing to determine the underlying cause of her nephrotic syndrome. It was then that Wilson was referred to an oncologist.  She agreed to a bone marrow biopsy, which came back positive for M protein. “And then the doctor told me, ‘Well, you have multiple myeloma,’” to which Wilson responded, “Ok, so let’s start treating!”

She was put on melphalan (Alkeran) and prednisone, which was the standard first-line treatment for myeloma in 2003.  Though she responded hematologically to treatment, meaning her M protein and plasma cell levels returned to normal range, Wilson still suffered with edema.

Her doctors were puzzled; she remembered them questioning, “Hematologically, you’re responding to treatment, but why aren’t your kidneys responding?”

Despite her ongoing kidney involvement, her treating oncologist and specialists at the Moffitt Cancer Center, where Wilson went for a second opinion, did not biopsy her kidneys. “Nobody wanted me to have a kidney biopsy because they said the treatment would be the same,” Wilson said.

It was not until after she switched to a new oncologist that she was urged to have a kidney biopsy.

Her kidney biopsy was sent for Congo red staining, the only definitive test to confirm for amyloidosis.  She was diagnosed with amyloidosis, and her new oncologist suggested she talk to Dr. Brian Durie, a myeloma expert at Cedars-Senai Medical Center in Los Angeles.

Meanwhile, Wilson’s edema worsened, and she had to be hospitalized. “I was on thalidomide (Thalomid) and dexamethasone (Decadron), and that wrecked havoc on everything. I was a walking Michelin man, and my legs were so swollen they were actually weeping.”

She talked to Dr. Durie during her hospital stay. He recommended she see a specialist at the Mayo Clinic in Rochester, Minnesota. She contacted the Mayo Clinic right away and received a call from Dr. Angela Dispenzieri within days.

It was then that Wilson learned of the complications thalidomide treatment has for amyloidosis patients. Dr. Dispenzieri informed her that thalidomide is known to cause further organ damage to organs effected by amyloidosis, which in Wilson’s case were her kidneys.

She went to the Mayo Clinic to see Dr. Dispenzieri for the first time in November 2003. They discussed the possibility of stem cell transplant, and although she underwent stem cell harvesting, Wilson ultimately decided against the transplant.

In retrospect, Wilson is glad she decided against the transplant because, at the time, her serum protein levels were low and she had gained weight because of the harvesting procedure. “Those two things, independently are bad risk indicators, so either one of those did not give me good odds to survive stem cell transplant,” said Wilson.

Wilson and her doctor decided to pursue a different protocol. “The last one I did was Velcade (bortezomib), and I ended that April 2009. I was declared in remission,” she said.

As of today, Wilson is no longer being treated for amyloidosis or multiple myeloma.  Because of the damage left to her kidneys as a result of amyloidosis and its treatment, she is still treated for nephrotic syndrome with diuretics and Lipitor (atorvastatin calcium).

Survival instinct was what kept her going in the fight against her diseases. “I don’t want to die, I want to feel good,” is what Wilson kept telling herself. She decided “to educate myself to what is potentially going to give me the best odds, the best outcome, the best quality.”

Wilson has found exercise to be the most important component of her recovery. “The number one health improvement factor is exercise,” she said. After her diagnosis, she took up Tai Chi, a form of relaxation and meditation she found therapeutic during her multiple myeloma and amyloidosis treatment.

Wilson also does yoga and recently completed a 5k run, both remarkable feats for someone who could not even sit Indian style on the floor when her legs and knees were swollen with edema. “I have to move, and the more I move, swim, and walk, the better I feel.”

“I’ve started to be my old self, more and more.  As I age, I feel I have some time to make up, so I can really subtract those years [with myeloma and amyloidosis] from my chronological age!” she said, laughing. “Those don’t count, so we’re going back to 54!”

Wilson had plenty of good advice for other patients: “Number one, get on a support group and ask questions.”

She also encouraged patients to get a second opinion and learn as much as possible about the disease. “You need to make sure you are up-to-date and that you verify everything you read. And that is not just for myeloma and amyloidosis. That is for an herbal remedy or whatever. Cross reference everything,” she advised.