February 23, 2008

TWO RIVERS — Five years ago, Andrea Burns discovered a mole on her back. She didn't have health insurance, so she didn't see a doctor.

"I really wasn't concerned about it at that time," said Burns, 35.

In hindsight, she should have been. She didn't recognize the danger signs.

"The mole changed. It bled, and it itched, and it changed in diameter," she said.

Burns took a job in Sterling, Colo., as a school speech therapist the next school year. Now that she had insurance, she went for a physical and told the doctor about the mole. It was still there but was no longer raised, just discolored, and it hadn't been bothersome, she said.

The doctor removed the mole but didn't indicate concern and didn't have a biopsy done.

When Burns came back to Two Rivers for Christmas that year, she noticed a lump in her left groin. She went back to the doctor and had it surgically removed in January 2004.

She was out running errands with friends when she stopped at the doctor's office for what she thought was a routine appointment to have the stitches removed. It was then she received the diagnosis that changed her life. She learned she had malignant melanoma, the most severe type of skin cancer. The lump was an enlarged lymph node with melanoma cells, she said.

"That was already stage 3," she said.

Burns said she was "just kind of stunned" as she heard the diagnosis.

She began seeing a cutaneous oncology specialist that spring at the University of Colorado Hospital in Denver, two hours from her home.

Surprisingly, a biopsy of the spot on her back where the mole had been came back negative. Nonetheless, Burns is convinced that's where her cancer started.

"My primary site is unknown, but I truly believe it was that mole," she said.

Her oncologist, Dr. Lynn Baatz of Holy Family Memorial, wouldn't speak specifically about Burns' case, but she said it's not unusual for the cancer to regress enough that it no longer can be detected.

Burns said her options ranged from doing nothing to following the most aggressive course of treatment.

"I wanted to do the most aggressive," she said.

That meant treatment called biochemotherapy, which involves taking standard chemotherapy drugs as well as two immune-boosting agents, interleukin-2 and interferon. She had to spend five days in the hospital every three weeks to receive the biochemotherapy. Each session was harder than the one before it, and she took longer to recover each time.

Side effects included blackouts, shaking and incontinence, said her mother, Judy Burns. She said her daughter would blow up like a balloon at the end of a treatment session, and she had to be on oxygen for a time.

During the course of that treatment, doctors removed another 20 lymph nodes from her groin. Two of them were infested with melanoma cells, she said.

After the fourth treatment, doctors decided she couldn't tolerate any more, so the biochemotherapy ended in July.

"I think it gave me a couple more years," Burns said of the treatment.

She also believes it helped her feel good for the next year. She returned to her job as a speech therapist for the 2004-05 school year.

"The year was real good," she said.

In August 2005, Burns came back to Two Rivers, moving in with her mom. A former employer offered her a job at Phoenix Behavioral Health Services, where she continues to be employed. She is a senior behavioral therapist who manages teams of therapists working with autistic children and young adults.

She didn't know it when she moved back here, but her health struggles were just getting started.

In April 2006, still feeling good, she went to the University of Wisconsin-Madison for follow-up care. An MRI of her torso revealed two lesions in her right lung. She had another MRI two months later.

"Sure enough, they grew a little bit," she said.

In August of that year, she had surgery to remove the bottom lobe of her right lung, which contained one of the tumors. Two others were wrapped around her bronchi and couldn't be removed. The one that was taken out was stage 4 malignant melanoma. The cancer was spreading.

Family members learned about a T-cell gene study at the National Institutes of Health in Bethesda, Md., that had been successful in two patients. At their request, Baatz got Burns invited to the NIH to be evaluated.

After two days of tests, Burns learned she wasn't a candidate for the gene therapy because of her blood type. She was invited to participate in a new study called Natural Killer Cell Protocol that had not been tried on humans.

"I decided to do it," she said. "It was the only thing that they offered me, and I wanted to do something. Continue to fight."

She and one other person were to be the first humans to try the treatment.

"It was scary but I was hopeful," she said.

The procedure, which she underwent in December 2006, consisted of removing white blood cells, reproducing billions of them in a lab and reintroducing them into her body in the hope they would go directly to the tumors and kills the cancer cells. She spent a week in intensive care, receiving seven doses of interleukin-2 and interferon.

Burns came back to Two Rivers in January 2007 and resumed work at Phoenix Behavioral Health. Each month, she flew to the NIH in Maryland for tests. For the first few months, the tumors didn't change. They weren't shrinking as she had hoped they would after the experimental treatment.

Then in June, she received devastating news. The tumors were growing. She went back in July, and they still were growing.

"They didn't offer me anything else," Burns said.

Even the National Institutes of Health couldn't do anything for her.

Burns said she asked to have the tumors removed but was told it wouldn't do any good and would be risky for her quality of life.

She said she was frustrated and angry, and she dealt with it in part by diving into work.

"I'm a strong person," she said. "I don't cry a whole lot. I keep a lot in."

Her mom said she was flustered because her daughter wouldn't talk about it. But Burns did write. She has been journaling for years, and she turned to that now as a way to express her thoughts. She often writes in her journal at 3 a.m. when she can't sleep, she said.

"It's a nice release for me," she said.

She still felt pretty good — until November. That's when she started experiencing low energy, decreased appetite and vomiting, finally to the point where nothing would stay down. She thought she had the flu. The symptoms got really bad the week after Christmas so Burns went to see Baatz, who ordered an MRI of her brain and a bone scan.

"Sure enough, lesions on my brain," Burns said. "(And) the cancer has moved to my bones."

Burns said she has three brain tumors, as well as one on her humeral bone and cancer in every vertebra except in her neck.

By this point, "nothing surprised me," she said. "I take it as it comes."

In January, she had 15 sessions of radiation on her brain and 10 sessions on her left shoulder.

"I've decided not to do chemotherapy," she said, because there are many side effects and few benefits.

Her options are limited because her health insurance only covers care in Wisconsin, ruling out specialized cancer centers elsewhere, but Burns said she doesn't know whether anything could be done for her anyway.

"I think it's moving quickly," she said.

However, she points out she has been dealing with cancer for five years and she's "still here, still fighting."

How she feels varies from day to day. There's some laborious breathing and occasional vomiting.

"I have pain every day, but sometimes I get pain just shooting from different parts of my body," she said.

She hasn't been allowed to drive since the brain tumors were diagnosed, "which stinks, because I really enjoy driving," she said.

There are times when her thinking isn't completely clear, her mom said.

Once she had a hallucination that lasted for about five minutes, Burns said, and she wondered if it might be the start of a seizure.

Because she is so weak, she needs a cane if she leaves the house, and she has to nap at least a couple of hours every day.

The change in lifestyle is hard for Burns, who said she's always been independent and needed to be busy.

Her mother is taking yet another leave of absence from work to be with Burns, who she says shouldn't be left alone. She has taken many months off over the years to care for her daughter.

Burns said she appreciates visits from friends as well as phone calls and text messages that keep her laughing.

There are things she still wants to do, she said, so she hopes to be around for a couple of years.

Cindy Hodgson: (920) 686-2966 or chodgson@htrnews.com