When traditional treatment didn’t work, innovation saved his life

A new drug helped our patient become cancer-free.

Joe Mottlow

Joe Mottlow isn't just tough. He’s Joe Joe Tough.

A little over a year ago, Joe’s world turned upside down when he was diagnosed with acute lymphoblastic leukemia (ALL), a condition that can progress quickly if left untreated.

After being recommended to University of Minnesota Health Cancer Care last September, he began receiving treatment from Shernan Holtan, MD, a hematologist and oncologist. Dr. Holtan and her team started with radiation but informed Joe he'd need a bone marrow transplant. 

Fortunately, both his brother and sister were perfect matches.

The transplant process

Joe picked his brother as his donor.

“It wasn’t like in the movies, where the two people sit side by side during the transplant,” Joe says. “I had a port (a small device underneath the skin and connected to a vein) in me and my brother was in a room above me. They stuck a needle in his arm, pumped stem cells out of his arm, and then put blood back in his other arm.”

Almost six hours later, Joe received his brother’s bone marrow at a slow rate for about 45 minutes. Then it was done.

Joe stayed in the hospital for a month. Back at home, Joe went to the clinic a few times a week to receive care until Dec. 5, when he finally received the news he was waiting for: He was cancer-free.

Joe thought he could go back to his favorite hobby, hunting.

Trying something new

But in early April, four months into remission, Joe got news no one wants to hear: His cancer had returned.

This time, Joe’s care team put a new port under his skin and used a new drug to fight his cancer. Blincyto, which was approved for this treatment by the FDA in March of this year, "acts like a magnet, bringing good T cells to fight cancerous B cells,” according to Dr. Holtan.

Since Joe had donor cells in his system, the Blincyto was able to bring the healthy donor cells to the leukemia cells and destroy them.

“This was the first time I had used this drug post-transplant,” Dr. Holtan says. “Usually we give this drug to people who don’t respond to chemotherapy to prepare them for a transplant.”

Luckily, Joe needed to stay in the hospital only two weeks this time before getting at-home treatment from Fairview Home Infusion. University of Minnesota Health's partnership with Fairview made it an easy transition.

“I was able to go home and be hooked up to the Blincyto through a bag and pump,” Joe says. “Blincyto was going into my port for 24 hours a day for 28 days, and I did three rounds of this.”

A Fairview Home Infusion nurse, Renee Johnson, visited Joe every two days to change his medication and make sure he was comfortable.

“Working with Fairview Home Infusion made Joe’s quality of life so much better,” Dr. Holtan says. “It would be cumbersome to receive the whole treatment in the hospital. He was able to be in the comfort of his own home while he was attached to the infusion pump, so he could still do the things he wanted to do.”

Three rounds of Blincyto treatments later, Joe was once again cancer-free.

Moving forward

It wasn’t always easy for Joe Joe Tough to stay positive. In fact, he acquired his catchy nickname after receiving encouragement to persist and be tough during his illness.

“When my cousin Chelsea got sick, my cousin, friend, and I did a Tough Mudder and named our team ‘Chelsea Tough’ in honor of her,” Joe says. “After I shared that I had been diagnosed with leukemia, my friend Heidi remembered the Tough Mudder and made a ‘Joe Joe Tough’ logo that we put on t-shirts, bracelets, and more that people wore to show support for me.”

He understands how the power of gratitude — and a strong support group — can help people through many challenges.

“It doesn’t matter how old you are, whether you have a lot of friends or not," Joe says. "Keep moving. Stay strong and positive. Make others cheer you on. Get your support group and stay connected."

In hopes of inspiring others, Joe has participated in a variety of events, such as raising money and creating a team for the “Light the Night” walk with the Leukemia and Lymphoma Society.  

“Right now, I’m in the middle of writing a book,” he says. “It’s going to be called ‘The Life of Joe Joe Tough,’ and it’ll discuss everything I’ve gone through in this process, from the beginning to the end.” 
  
Learn more about the University of Minnesota Health bone marrow transplant program and Fairview Home Infusion.

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