Cancer > Building a Home After Cancer

Building a Home After Cancer

Jon and Carolyn Stahlecker always dreamed of moving to the countryside. Soon, it will become a reality.

By Christine Tully Photography by Kat Schleicher

IN 2015, JON AND CAROLYN STAHLECKER bought 42 acres of land in rural Marathon County, Wisconsin. The land has everything — small ponds; a hiking trail through the woods; tillable land to grow soybeans, corn and sunflowers; and a magnificent view of Hardwood Hill, which is dotted with varieties of maple trees that bloom in a stunning array of colors each autumn.

Both Carolyn and Jon grew up in the area and planned to settle there long term, with a barn for Carolyn’s horses — five and counting — and a workshop for Jon’s woodworking.

Their hope? Eventually build a house together.

But they weren’t sure if they would ever have the chance to fulfill their dream. For 13 years, Jon and Carolyn lived and planned their life in two- to three-year increments. In 2007, Jon had been diagnosed with chronic lymphocytic leukemia (CLL) — a cancer that currently has no cure.

Two at a time

Jon’s diagnosis of cancer happened by chance. After nearly 25 years without visiting a doctor, he decided to go for his first physical since he had exited the military at age 22.

A series of tests showed Jon’s white blood cell count was abnormal. Physicians discovered he had CLL.

CLL is a common form of leukemia in which the bone marrow makes too many white blood cells. This type of leukemia, which affects about 200,000 people in the United States, typically progresses more slowly than other types. Often, patients don’t receive treatment until symptoms become worse.

Jon was shocked. He felt fine, a sign they caught the cancer early. He wouldn’t start his first round of chemotherapy until a year later when he began feeling fatigued.

Jon and Carolyn began dating in 2008 after meeting at the financial software company where they both worked — a year after Jon had been diagnosed with cancer.

“It’s a complicated way to start a relationship,” Carolyn says, “because we really didn’t know what this journey would look like or what the future would hold.”

Shortly after they started dating, Jon began chemotherapy. Doctors told him they anticipated he would have three years with more manageable symptoms before needing treatment again.

“It felt like we were kicking the can down the road,” Jon says. “My doctors knew they were never going to cure my cancer, but they wanted to extend my life as long as they could.”

Jon went through chemotherapy in 2009 at a local oncology clinic and again in 2013 and 2016 at Mayo Clinic. Each time, his cancer would come back slightly different, and within a shorter time frame, than before. In the meantime, Jon and Carolyn spent their days with family — celebrating the arrival of grandchildren, gathering with relatives at reunions and traveling.

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Fading Dreams

In fall 2015, Jon and Carolyn finally bought a plot of land where they hoped to eventually build their home, deciding not to wait for the recurrence of Jon’s cancer but still not confident enough to begin construction.

In the spring, a phone call came that altered everything. Jon and Carolyn were shopping at a department store on a Saturday when Mayo Clinic oncologist Tim Call, M.D., reached out to him.

“Dr. Call said I had a 17p deletion,” Jon says. “It wasn’t until later that we realized the magnitude of what Dr. Call was telling us.”

It was a difficult new twist. A 17p deletion meant part of Jon’s chromosome 17 was missing. This deletion indicates rapid disease progression — meaning the cancer cells have figured out a way to outsmart treatment. His options were running out. Chemotherapy wasn’t going to work anymore.

Carolyn, the planner of the family, immediately became worried.

“You start grasping at straws,” Carolyn says. “I knew it wasn’t good.”

While waiting for next steps, Jon and Carolyn continued living their life as best as they could. They married in summer 2017, a bright spot throughout several emotionally exhausting years.

In 2018, Dr. Call referred Jon to Saad Kenderian, M.B., Ch.B., a hematologist and oncologist who specializes in immunology and immunotherapies — using the body’s own immune system as a method of treatment. Jon and Carolyn began looking at other experimental treatment options. Jon started another round of a BTK inhibitor drug, which blocks the growth of cancer cells. Options, though, continued to dwindle.

“Jon’s cancer was rapidly growing,” Dr. Kenderian says. “We didn’t have many standard of care options that we could offer him at that time.”

In June 2019, Jon received a call from Dr. Kenderian saying that he would be a strong candidate for a new clinical trial — the lifeline he and Carolyn had been looking for.

“It’s like winning the lottery just to get accepted into this clinical trial. I felt really fortunate to have the opportunity. It was hope.”

— Jon Stahlecker
After receiving CAR-T cell therapy treatment, Jon has returned to doing what he loves: carpentry. He enjoys building cabinets and tables, and is planning custom woodwork in his and Carolyn’s new home.

Restoring Hope

The multisite clinical trial was offered as part of Mayo Clinic’s Chimeric Antigen Receptor (CAR)-T Cell Therapy Program, which offers a new cancer immunotherapy that involves genetically modifying T cells to activate the immune system to recognize and destroy certain cancers. The CAR-T cell therapy study enrolled 117 patients with CLL and small lymphocytic lymphoma.

WHAT IS CAR-T CELL THERAPY?

Traditionally, physicians had three options to treat cancer: surgery, radiation therapy and chemotherapy. But a promising new therapy has transformed treatment options for certain types of cancer — giving more patients like Jon Stahlecker hope.

CAR-T cell therapy is a form of immunotherapy in which a person’s T cells — white blood cells known as lymphocytes that are involved in the immune system response — are removed and genetically modified to produce chimeric antigen receptors (CARs). These CAR-T cells are then infused back into the patient’s bloodstream, where they target and destroy cancer cells.

CAR-T cell therapy is used primarily for blood cancers like multiple myeloma, leukemias and lymphomas. Five years ago, patients with blood cancer faced a 10% to 15% survival rate. Today, survival rates are around 40% and improving.

“The job is not done yet,” says Mohamed Kharfan Dabaja, M.D., M.B.A., a hematologist and director of the Blood and Marrow Transplantation and Clinical Cellular Immune Therapies program at Mayo Clinic in Florida. “We need to continue to bring new therapies, and to understand not only why it is not working on a certain patient but also why it is in others, and that will bring new knowledge about how to improve treating blood cancers.”

Mayo Clinic researchers are searching for ways to expand CAR-T cell therapy to more types of cancers, including new tumor types. Additionally, Mayo Clinic has begun biomanufacturing some CARs on-site, which may help better tailor treatment to a patient’s individual needs. The hope is to provide another opportunity for patients whose cancers don’t respond to conventional, commercially approved CAR-T cell therapy options.

“Clinical trials can be lifesaving,” says Dr. Kenderian, who was the principal investigator for the clinical trial at Mayo Clinic. “It’s how we test new therapies and get them into the clinic to help patients who don’t have other treatment options.”

The criteria to be eligible for this trial included having CLL, having had chemotherapy and having used specific drugs to combat cancer.

“It’s like winning the lottery just to get accepted into this clinical trial,” Jon says. “I felt really fortunate to have the opportunity. It was hope.”

But it wasn’t an easy journey. Starting the treatment in 2019, Jon experienced dangerously high fevers for the first three weeks and spent that Thanksgiving in the hospital.

Then came a turning point. Jon’s fever broke. And each day he became stronger.

When Jon was infused, 80% of his bone marrow was cancerous. In two months, the cancer was gone — no trace left in his body. After returning home from the hospital at the end of December, he was shoveling snow, determined to live his life as he did before cancer.

The research from the clinical trial found that 18% of participants who, like Jon, had relapsing CLL and no longer responded to treatments such as chemotherapy or BTK inhibitor drugs, experienced complete remission after a single infusion of standard CAR-T cell therapy. The results are encouraging. So far, many patients like Jon are not seeing relapses, even years later.

“If I had developed cancer five years earlier, I don’t think I would be here today,” Jon says. “But I always believed the doctors at Mayo Clinic were going to keep me going. And you know what? They did.”

Despite the immediate results, Jon and Carolyn were still on pins and needles. They faced yet another hurdle: making it one year cancer-free.

That year came and went. And another. And another. What’s more, Jon felt as good as he did before he was diagnosed with cancer.

“It’s really gratifying as a provider to hear that Jon is feeling back to his old self,” Dr. Kenderian says. “I hope we’ll be able to increase the success rate of CAR-T cell therapy to 100% of people across all types of cancers.”

Jon is back to hunting, fishing and golfing. His visits to the doctor’s office continue to decrease, from every three months to now every six.

“I’m back to living an active life,” Jon says, “and I feel better than I have in many years.”

“I’m back to living an active, normal life, and I feel better than I have in many years.”

— Jon Stahlecker
Researcher Spotlight: Claudia Manriquez Roman, Ph.D., M.S.
Mayo Clinic researchers are enhancing CAR-T cell therapy's effectiveness for cancer treatment.
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The Next Chapter

Jon and Carolyn are now able to live fully, grateful for the newfound freedom that Jon’s cancer most likely won’t return.

Jon spends his days building cabinets, tables and more in his shop on the property and working the land with his tractor as there are still more projects to do after eight years of just getting by. Currently, they live a few miles away in Mosinee, where they spend quality time with their grandkids, who live just across the street.

Most importantly, they have plans to build their house — finalizing the design in fall 2023.

A contractor will build the foun­dation and walls and install the windows. Jon and Carolyn will do the rest, adding touches like Jon’s custom cabinetry. By the time the leaves change colors in 2024, they’ll be living their dream.

“What makes it even more special is that this is something we’ve been wanting to do for eight years, and we couldn’t,” Jon says. “It’s finally really happening thanks to Mayo Clinic.”

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