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Man who has RMS, a rare cancer, celebrates Father's Day with his stepson

June 17, 2011|By MARIE GILBERT | marieg@herald-mail.com
  • David Denn, center, with his stepson Jeremy Myers left and Dave's wife Karen Denn sit outside their Hagerstown home. David Denn was diagnosed with a rare cancer called pleomorphic rhabdomyosarcoma in 2008.
By Joe Crocetta/Staff photographer

They both like cars, playing video games and doing anything mechanical.

It's typical father and son stuff.

But their bond isn't biological. They're connected by love and respect.

Jeremy Myers was about 12 years old when David Denn came into his life. Jeremy's mother, Karen, met Denn at their place of employment in Frederick, Md., where she was a production planner and he was a prototype engineer. Karen Denn is also a cousin of Herald-Mail Lifestyle Editor Crystal Schelle.

Karen and Dave began dating and eventually married. This was good for Jeremy.

"Dave became the only guy in my life who has mainly been my dad," Jeremy said.

Over the years, they've developed a special relationship, supporting each other through thick and thin. Never has that support been more important than during the past few years.

In 2008, David Denn was diagnosed with a rare cancer called pleomorphic rhabdomyosarcoma (RMS). It is so rare, there have been just over 400 cases of adult RMS reported at major cancer centers in the United States and Europe over the past 20 to 30 years.

Typically a children's cancer, there are about six adults in the world over the age of 21 with RMS, Denn said. At the age of 42, he is one of them.

Sarcomas are cancers of the connective tissues, such as nerves, muscles and bones. RMS is a malignant tumor that develops from a normal skeletal muscle cell. Because skeletal muscle cells are found virtually throughout the body, RMS can develop in almost any part of the body.

For Denn, it began in his forearm.

In January of 2008, Denn said he noticed a knot on his left forearm that was painful.

"But I ignored it and put muscle cream on it to treat it," he said.

Gradually, the pain spread up the arm and into the nerves of his shoulder and neck.

As the pain and swelling increased, Denn said his wife encouraged him to schedule a doctor's appointment. But he didn't go until several months later.

"Originally, I went to see my primary physician in Walkersville, Md., who sent me immediately for an MRI and other tests," he said. "I was then told it appeared to be sarcoma so I was sent to a specialist team at Washington Hospital Center in D.C. I was sent there because of the rareness of the disease."

Denn said there was more testing, including a biopsy of the arm. Tests also were done on his lungs, which showed some nodules "but they didn't know for sure if it was cancer or something from years past."

A week later, he was told the news. It was pleomorphic rhabdomyosarcoma.

"I thought, 'Am I going to lose my arm?' I was kind of numb. I was 39 at diagnosis and had a lot of things I wanted to still do in life," Denn said.

Following the diagnosis, Denn went to see an orthopedic oncologist surgeon at Washington Hospital Center, who referred him to another doctor at the center for chemotherapy.

"They thought it was best to attempt to shrink the tumor, which was nine by 12 centimeters, before trying to remove it," he said. "I was hospitalized for four days."

The chemotherapy failed. After about six months, he was referred back to the surgeon who said he would attempt to remove the tumor. It was successfully removed in November of 2008, followed by seven weeks of radiation and physical therapy.

"The surgeon had done such a great job," Denn said. "He removed five muscles and a radial nerve and I could still use (the arm). It's not as strong as before, but it works."

Denn thought he was cancer free. But in June, follow-up scans showed the spots on his lungs had grown and multiplied.

He then was sent to a thoracic surgeon who told him the spots were in a difficult space and he didn't feel confident in operating. He was referred back for more chemo.

Denn said traveling to Washington, D.C. on a regular basis had become an extreme hardship, so he asked the doctors if he could get treatment closer to home. He received approval and began seeing Dr. Sadaf Taimur, an oncologist in Frederick in July of 2009.

"I was put on a total of eight different types of chemo," Denn said, "and most only kept the spots stable. Nothing worked to decrease them in size or quantity."

Denn said the chemotherapy drugs had expensive copayments — around $850 every month. The drugs also caused hair loss — "Not just to my head," he said, "but my eyelashes and eyebrows." He also had low blood counts, which can cause infection and weakness.

During this time, Denn said he continued to make occasional trips to the Washington Hospital Center for scans. But the prognosis was not good. Eventually, he was told there he nothing left to try.

"They suggested we find a clinical trial," Denn said. "So, my wife, Karen, and I first went to Memorial Sloan Kettering in New York City, where we were told about one or two clinicals. But nothing seemed to be promising. At least, they couldn't sell us on it."

Then, a few months later, the couple went to the Dana-Farber Cancer Institute in Boston, which had a possible clinical trial. But not even a week later, the trial was closed.

Returning from Boston, Denn said he visited his doctor in Washington and told him about pain in his side, something he had mentioned weeks before. A CT scan showed that the cancer had spread to his ribs.

He was sent to his radiation oncologist in Hagerstown, who had performed the radiation on his arm in 2008. The cancer had spread to two ribs and the marrow of part of some vertebrae.

"I received 10 days of radiation but this delayed me going on any clinical trials," he said.

When he had almost completed his radiation, his wife found a suitable clinical trial at the National Institutes of Health in Bethesda, Md. But after completing several tests, it turned out Denn didn't qualify because his tumor was too close to a main vessel, which could cause him to bleed to death.

Other clinical trials were suggested, but Denn said they were not suitable, and they also had many side affects.

Denn said a knot had appeared on his head and his wife brought it to the attention of Dr. Taimur, who ordered an MRI. The cancer had now spread to his skull and he was again referred for radiation treatment in Hagerstown.

"During this time, Karen found a clinical trial at Johns Hopkins that was Phase II," Denn said. "We made arrangements and had received the testing and after a few weeks waiting for the radiation to be completed and a month of no treatment, we decided to go on this trial."

Denn said he is being seen by Dr. Christian Meyer, who is a sarcoma specialist. The trial, specific to Hopkins, requires him to receive the drug Doxil every 28 days (a one-hour treatment), plus blood work, then every week a 30-minute treatment of the drug Torisel.

"So far, the side effects have been very severe on me," Denn said. "It's caused mouth sores, which means I don't want to eat. It's caused a severe rash that I can only describe as poison ivy with sunburn on top of it. And I've become very weak."

Denn said the prognosis for the trial is low — a 10-percent success rate.

"But it was better than what we had, which was zero," he said. "It's very hard being told they have nothing left to try."

Luckily, he said, after the first cycle, the scans shows the spots on his lungs had shrunk. Nothing had worked before.

"I'm now on a second cycle and as long as they can keep me going on these drugs without too many side affects that affect my quality of life, then I will continue," he said.

Though he is the patient, Denn said the disease has enveloped his family, as well.

"It's been very hard for them," he said. "When I'm in pain, all they can do is watch. The stress of the unknown is hard. It's hard to stay positive when you look at the statistics of my disease, which has been Stage IV."

Denn said a recent study noted that the average RMS patient only lived an average of 36 months after diagnosis. He recently passed the three-year mark.

"I just try to live one day at a time," he said.

"It's very hard for me to watch Dave get the chemotherapy drips and to see how uncomfortable he is," Karen Denn said. "I can't do anything other than rub his back, get him something to drink or a warm blanket."

It's also hard to watch how people react to him, she said. "I think they avoid him and us because they don't know what to say. If you give someone an update on Dave that is positive, people are all over that. But if it's negative, they shy away from you quickly. People just can't handle it. But this is our life and we can't run from it."

Denn said he doesn't like his family having to take care of him.

"I can barely shower without passing out and I can't even do normal things, such as dishes or other cleaning without becoming dizzy or easily winded, which is why I've been on disability since July of 2010," he shared.

He worries about the stress his family is experiencing and how it will affect their health.

"I just wish I could live a normal life — go on vacations, work on my car, just the normal things in life other people get to do."

His son, Jeremy, is hoping to add some normalcy to the family's life when he takes his parents out for breakfast on Father's Day.

"It's become a tradition," he said. "But this year might be harder with Dave having mouth sores, making it difficult for him to eat."

If those plans fall through, he'll have something else to take its place — something special to honor his stepfather.

"I never really experienced Father's Day until Dave," he said. "And he's made my mom happy, too."

Karen Denn said persons wishing to write well wishes to her husband may do so at www.caringbridge.org/visit/daviddenn. She also noted that a fundraiser for several area cancer patients, including her husband, is planned for August. More information can be found at www.ppfinc.org.

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