Worth the Distance: Advanced Cancer Treatment Helps Alaska Man After Just One Infusion

**By Hagen F. Kennecke, MD, MHA, FRCPC

The day after Christmas in 2016 brought unwelcome news for Wasilla, AK resident Josh McCool.

McCool, then 26, was diagnosed with a rare tumor of his adrenal gland, called a pheochromocytoma (fee-o-kroe-moe-sy-TOE-muh). But after surgery to remove the tumor, a type that can cause serious complications but is rarely cancerous, McCool’s symptoms returned and got much worse.

“My resting heart rate was very elevated,” remembers McCool. “I was super weak, unable to play with my kids, and spending 16 to 18 hours a day in bed. On top of that, I lost more than 100 pounds over six months. I would be out of breath just walking from our couch to the kitchen.”

A Rare Cancer 

McCool’s pheochromocytoma was a type of malignant tumor known as a neuroendocrine tumor, or NET. There are many types of NETs, some which make abnormally high amounts of hormones that cause many different symptoms. After traveling to the Seattle Cancer Care Alliance and undergoing extensive evaluation, McCool was referred to the Neuroendocrine Tumor program at Virginia Mason Medical Center.

That’s when I first met McCool, who had become very weak and sometimes needed a wheelchair. He was in significant pain and his cancer was secreting adrenaline, which was causing even more symptoms. To help target his treatment we used a specialized PET-CT scan, called NETSPOT®, which identifies hormone receptors on cancer cells.

With the cell receptors identified, McCool became a candidate for an advanced treatment known as Peptide Receptor Radionuclide Therapy (PRRT) with a treatment called Lutathera®. In PRRT, a cell-targeting protein, or peptide, is combined with a small amount of radioactive material. When injected in the blood stream, this new substance, called a radiopeptide, binds to NET cells, delivering a high dose of targeted radiation.

Josh Before and After Treatment

Immediate Results

Amazingly, just one week after his first treatment, McCool noticed his symptoms were improving. A better appetite was followed by markedly more energy, increased activity and a significant decrease in his back pain. The targeted nature of PRRT — binding to a protein only on the cancer cells — greatly minimized side effects.

A total of four treatments were needed, once every two months. Since PRRT is not available in Alaska, McCool arranged travel to Virginia Mason. After only his second infusion, McCool was completely off pain medications, had gained weight and was able to play with his two young sons.

A New Beginning

Josh-McCool_Shannon-and-sonsDespite all the challenges of therapy, McCool feels very lucky. “Getting the green light to move ahead with the treatment was like winning the lottery,” says McCool. “It has definitely been a character building experience and one I couldn’t have gotten through without the amazing support system of family and friends that I’ve been blessed with all along the way.”

McCool finished his treatment this month and is planning a trip to Disneyland with his family next year.

All of us on the Neuroendocrine Tumor Program team who took care of Josh McCool take great inspiration from the remarkable improvement in his health. While PRRT is not a cure, the treatment has the potential for adding years to an active and fulfilling life.

Hagen F. Kennecke, MD, MHA, FRCPC
Hagen F. Kennecke, MD, MHA, FRCPC, has advanced training in oncology and specializes in neuroendocrine tumors and colorectal cancers. He is director of the Cancer Institute at Virginia Mason. Dr. Kennecke practices at Virginia Mason Hospital and Seattle Medical Center.

New Treatment Slows Tumor Growth, Improves Quality of Life

The epitome of frustration is, when your symptoms have taken control of your life and medical professionals can’t find a way to make them stop. For more than five years, that was Gig Harbor resident Ellen Dunn’s life.

She suffered with ongoing cramping, diarrhea and dry flushing of her skin. She was first diagnosed with Irritable Bowel Syndrome, but that was incorrect. “No matter what was

Ellen Dunn

Ellen Dunn underwent therapy at Virginia Mason for carcinoid tumors, an uncommon cancer that affects the intestines, pancreas, lungs and other parts of the body.

prescribed, my symptoms just kept getting worse. It was ruining my life,” Ellen remembers. “I told my internist it’s got to be something else. She recommended I take a blood test for carcinoid syndrome, and that’s what it was.”

Finally, Ellen had an answer. Malignant carcinoid tumors tend to grow slowly. But when they increase in size, they cause pain and can produce hormones that cause diarrhea, flushing and disrupt the body’s endocrine system. Standard chemotherapy and radiation aren’t effective on these types of tumors.

Fortunately for Ellen, she learned she had carcinoid tumors at the same time a treatment to control the growth of neuroendocrine or carcinoid tumors (NET) was going through a clinical trial. Led by Hagen Kennecke, MD, medical oncologist and medical director of the Floyd & Delores Jones Cancer Institute at Virginia Mason. Ellen was selected to be the first patient in the Pacific Northwest to receive this treatment.

Called peptide receptor radionuclide therapy (PRRT), the treatment involves an injection of a small protein peptide into the patient’s bloodstream. The peptide finds the cancer tumors and binds to them, while also protecting the surrounding tissues. PRRT has been shown to significantly slow the growth of tumors. It is also beneficial to patients with advanced neuroendocrine tumors who are not candidates for surgery and whose symptoms are not responding to other medical treatment.

In December, Dr. Kennecke and radiologist Marie Lee, MD, administered the first treatment to Ellen. She receives PRRT treatments every two months in an outpatient setting The treatment lasts only a few hours and has minimal side effect. Ellen had her third PRRT treatment in April.

“Until now, there has been no effective therapy to shrink small bowel and lung neuroendocrine tumors when surgery is not an option,” says Dr. Kennecke. “While this procedure does not cure cancer, it significantly extends the lives of those living with the disease and improves their quality of life. We are proud to be on the forefront of this promising, highly targeted therapy which can be used for the treatment of other cancers in the future.”

More than 3,000 patients with advanced carcinoid tumors live in Washington state. This new treatment helps the majority of these cancer patients and controls the tumors for three years on average. The treatment may be repeated as needed.

“I’m so thankful that I was accepted into the program,” Ellen says. “I feel very fortunate.” In early April 2018, Virginia Mason became the first medical center in the Pacific Northwest to administer PRRT as part of routine care, offering a viable new treatment to many patients. In the near future, Virginia Mason will be offering clinical trials of a very similar therapy to treat patients with prostate cancer.

A version of this article also appears in the Virginia Mason Health System 2017 Annual Report.