It's difficult for anyone to hear the words, "Stage 4 melanoma," and not fear the worst.
In 2008, the five-year survival rate melanoma skin cancer was just 15-20%, according to the AJCC Melanoma Staging Database. While survival rates have improved since then, it continues to be a tough diagnosis to hear, as Chris Lutgen will readily admit.
The former West Union area hair stylist and Upper Iowa University employee had retired, and with her husband, Gary, moved to an acreage in rural Stanley, just south of Highway 3. There, they hoped to build a peaceful existence relaxing beside their pond, once Gary, a long-time court reporter, also made his retirement official in October 2013.
But in May last year, doctors at Mayo Clinic in Rochester, Minn., told the couple Chris had stage IIIC melanoma in the big toe of her left foot. In June, Lutgen's toe was amputated and she had a radical left inguinal lymphadecnectomy when doctors realized the cancer had spread.
In the procedure, 13 lymph nodes were removed spanning from Chris' foot to her chest.
A common risk of the procedure is lymphedema and infection and Chris was no exception. She returned for emergency surgery and a week of hospitalization for the infection. After weeks of fighting the swelling, she began to recover, but had to endure leukine treatment over a period of four months: injections into her stomach in an attempt to promote the production of white blood cells.
In November, Lutgen began immunization with peptide protocol and thought she was doing well as her scans didn't appear to show growth of the tumors.
But at a check-up at Mayo in late February, "Boom! a CT scan of my chest showed enlargement of previously small pulmonary lung nodules," Lutgen remembers. "The CT of my abdomen showed new enlarged nodes again. A biopsy confirmed the metastasis of my now Stage IV melanoma."
Although the Lutgens had been satisfied with the care given Chris at the Mayo Clinic to this point, they decided to get another opinion. They talked with their three sons, who agreed that the four to six months of life Chris had been giving as a prognosis if she did nothing, wasn't an acceptable option.
The Lutgens did some research of their own on the internet. The pioneering cancer studies in the area of immunotherapy at MD Anderson Cancer Center in Houston gave them hope.
Friday, March 14, Gary and Chris and their Yorkshire Terrier, "Diva," drove to Rockport,Texas. Leaving the dog in the care of Chris' sister and brother-in-law, the Lutgens drove the 200 miles back to Houston on Monday, the 17th. Tuesday, a battery of blood tests began. There were MRIs, blood tests, and numerous other scans at MD Anderson Cancer Center that week. Oncologists asked for Chris' toe – amputated at Mayo Clinic – to be sent to them for examination.
Chris remembers how when she waited on the table for yet another PET scan, she couldn't help but imagine the worst: what if she would miss watching all of her then, seven grandchildren grow up. (An 8th grandchild was born a few weeks ago.)
There were consultations and the Lutgens met the oncologist they'd come to know as "Dr. Papa." Even though the traffic and the loud, noisy atmosphere of a metropolis like Houston left them frazzled at the end of the day, the Lutgens were optimistic. When Chris wasn't at the hospital, the couple looked into more affordable long-term housing.
Friday, April 4, Chris had surgery to remove tumors in her pelvis and arms. As she laid in her hospital room recovering, Gary picked up the Houston Chronicle Sunday paper. There on the front page, was a photograph of the researcher credited with a breakthrough in immunotherapy that saw him earn the 2014 Breakthrough Prize in Life Sciences.
Dr. James Allison, Chairman of the Department of Immunology at the University of Texas MD Anderson Cancer Center, was the first person to prove that a protein receptor on T cells, (immune system enforcers) act as a checkpoint to shut down immune response so the body no longer fights the growth of tumors. He developed an antibody that encourages the immune system to attack cancer by blocking the immune checkpoint molecule CTLA-4.
Ultimately, Allison's research led to the development of the first drug to be approved by the FDA for the treatment of metastatic melanoma.
Ipilimumab, or "Ippy," as it's known to the Lutgens, is a PD-1 therapy that doesn't treat tumors or the cancer – but recruits and encourages an individual's own body to develop a stronger immune response to fighting tumor cells.
Chris and Gary read the article on Dr. Allison, becoming more encouraged that immunotherapy could be the answer to their prayers: that Chris would beat metastatic melanoma. A photo included with the article featured a woman, now 32, who was diagnosed with stage IV melanoma at age 22. Although considered 'experimental' at the time, the woman received 'Ippy' treatments and her cancer has been in remission for nearly a decade. Another woman, was a 37-year-old Fort Worth, Texas mom who had a year of immunotherapy, but has now been declared cancer-free.
"I want to be one of those women," said Chris through her tears as the couple read the article about Dr. Allison's breakthroughs.
"I want to be one of those survivors. The next time, you're going to see me featured on the pages of the Houston Chronicle as one of the success stories," she says bravely.
Married 43 years, Chris says she loves her husband more every day for his support through her ordeal.
"It's been an exciting year and a half," says Gary, with a grin. "It was adventurous to say the least."
Thinking back to the many other cancer patients they saw at MD Anderson during Chris' immunotherapy treatments, Gary's sense of humor reminds Chris why she loves this guy.
He says, "Most everyone was in pairs: either it was a spouse, or a parent or a child, accompanying the person with cancer. In each pair, you could tell the cancer patient because they usually didn't have hair. In our case, I was the one without hair!" he laughs about his new, shaved look.
But Chris shakes her head and says Gary went above and beyond for her.
"I don't think a lot of men could have done this," she says.
Yet Gary is quick to shrug off the praise.
"You wouldn't have thought it was so great if I'd been in that cabin (at Hope Cancer Retreat) with you every day!"
After moving to different hotels and centers every couple of days, the Lutgens feared with an expected stay of one year they might have to sell their home in Iowa and move to Houston – a city they couldn't imagine calling 'home.'
Then they found Hope Cancer Retreat, 38 minutes from MD Anderson.
"I had a feeling of spirituality the minute I stepped on the place," Chris remembers. "Although I've always believed in God I think now I have a deeper understanding of what's out there with all the healing I've experienced."
At Hope Cancer Retreat, near Splendora, TX, each family has their own one bedroom cabin at a cost of $25 or $50 per day – much more affordable than the $150/night hotels, and more private and peaceful too.
In between treatments, Chris was able to relax at Hope Retreat, with a good book ... yet Gary would pace and just couldn't sit still.
"I didn't know how I was going to stand it," he admits.
But, divine intervention brought Gary a task that would keep his head and hands busy each day. He volunteered to help the owners of the retreat center build another cabin.
Seven days a week, Gary pounded nails into two by fours and helped frame and construct a cabin that would offer hope to another family like the Lutgens – people who will need a quiet place while receiving medical care – away from the chaos of Houston.
At Hope Cancer Retreat the motto is, "You have to have hope before you can have faith."
Through their ordeal, the Lutgens found both.
A couple of weeks ago Chris was released from MD Anderson upon completing four months of Ippy intravenous treatment. The couple stopped at Taco Bell for a bite to eat and Gary saw he had missed a call from Chris' oncologist, Dr. Papa. He listened to the message as Chris waited anxiously for the news.
"I played the message for her," says Gary. "We both just bawled and bawled right there in Taco Bell," remembers Chris about the news that her tumors had shrunk even more than her doctors had hoped for.
They can laugh now, knowing how peculiar their reactions must have seemed to others. "Everyone else must have wondered if the tacos were really that bad," they joke.
In his message, Dr. Papa told them they could wait eight weeks, rather than four, before returning to MD Anderson. He had earlier explained that because the body's immune system has a memory, it would continue to fight the tumors on it's own, even as Chris returned home to Iowa.
When Gary and Chris return to MD Anderson in middle to late October for what she hopes will be her last surgery, they will be the first to stay in the cabin that Gary helped build. Chris will have surgery on the one remaining tumor in her pelvis area that was once too dangerous to remove because it was wrapped around a major blood vessel. Since treatment, the tumor had shrunk to less than half its previous size.
Although Chris is still working to regain all her strength, she says being with their good friends Mike and Judy Roach; Steve and Leanne Berns, and Gary and Karen Skinner, has been therapeutic. They've gone golfing, and she appreciates the general concern shown to her by these three couples, and so many others.
"The whole community has supported me during this ordeal," she says graciously. "It's been very humbling and life changing to go through something like this. People are so good."
As a result, Chris says she wants to pay forward her miracle. She isn't sure how, just yet, but she's sure the perfect idea will come to her.
And one day, when she returns to MD Anderson for a periodic check-up, Chris Lutgen hopes that just might be her image on a poster on the wall of the hospital, featuring proud cancer survivors.
Since 1990, U.S. News & World Report has consistently ranked MD Anderson Cancer Center either #1 or #2 in cancer treatment in the United States.
