Leukemia patient shares tips for others beginning clinical trials

A lover of the outdoors, Betty Hemmingsen participated in a clinical trial for chronic lymphocytic leukemia and says she feels lucky to have been connected with the right doctor at the right time.

A lover of the outdoors, Betty Hemmingsen participated in a clinical trial for chronic lymphocytic leukemia and says she feels lucky to have been connected with the right doctor at the right time.

"I have leukemia, but I'm lucky," says Betty Hemmingsen.

Diagnosed with chronic lymphocytic leukemia (CLL) in April 2011, Betty participated in a clinical trial at Willamette Valley Cancer Institute and Research Center. Sixteen months later, she learned her cancer was inactive. 

Deciding to join a clinical trial
"I didn't have a lot of angst in deciding," Betty says. "I thought anything would be preferable to chemotherapy. And even if it didn't help me, I was willing to offer myself to an experiment that could potentially help others in the future."

Referred to WVCI medical oncologist Dr. Jeff Sharman, Betty felt she was in good hands, but performed due diligence by seeking a second opinion — a step she would recommend to anyone before beginning the trial. After a second examination and discussion, she was convinced that the WVCI trial would be a perfect fit.

"It was really reassuring to get a second opinion," she says. "I feel like everything leading up to my diagnosis and treatment fell exactly into place."

Life before cancer
Betty, who grew up in suburban New York and made her way west after college, landed in Oregon in the '70s and met her husband, Jim, while working at a small cafe in downtown Eugene. That was 38 years ago. "I made his lunch that day, and I've been making it ever since," she says with a laugh.

Raising a daughter and their shared love of the outdoors — hiking, bird watching, skiing and kayaking — has kept them busy, physically active and connected over the years. And soon they will welcome a granddaughter to their family.

Recognizing the symptoms
For many years, doctors had dismissed her symptoms and concerns and made no correlations among successions of ailments, including fainting and tiredness, swollen lymph nodes, extreme allergies and two attacks of shingles. "The individual pieces didn't make sense, but eventually they all pointed to a weakened immune system," she says.

In 2009, her naturopath, Dr. Andrew Elliott, who she'd been working with to balance her system, first posed the possibility that she may have CLL. But two years passed until her condition was severe enough to be referred to Dr. Sharman at WVCI.

"It was the first time in a long time that I felt safe in the hands of a Western medicine doctor," she says. "I believed Dr. Sharman knew what he was doing. He explained the options and made it a lot less scary. I was impressed with his expertise and confidence and his deep involvement in the research community."

She was relieved to finally know the cause of her health problems and to learn that there was a possibility to overcome them through treatment.

Tips when undergoing treatment
During the next six months, Betty underwent a series of 10 eight-hour immunotherapy infusions. She experienced none of the common side effects often related to traditional chemotherapy, such as hair loss and nausea.  

"It's common to have some adverse reactions from the first dose, but after that first day the infusions tended to go pretty smoothly with little or no reactions" she says. "I had two weeks of fever. Beyond that, the infusions were time-consuming, but really quite easy."

Throughout treatment, she noted some helpful tips she thought to pass on to other patients undergoing similar therapies:

  • Bring your own lunch. You may not be hungry during your first infusion, but during the long hours of most treatments you'll likely want something good to eat. WVCI offers drinks and snacks; but if you want real food, you need to bring your own. WVCI has a refrigerator and microwave available for patient use.
  • Wear loose, soft, comfortable clothes and easy-to-slip-on/off shoes or slippers.
  • Pack a book, iPod, magazines or crossword puzzles.
  • Bring your favorite blanket, afghan or sweater, and possibly a small pillow.
  • Invite a friend, partner or relative to visit you. While you may doze off throughout treatment, it's nice to have someone to talk with part of the time.
  • Arrange for a friend or relative to drive you to and from treatment, at least for the first four or more infusions. (If a friend or relative cannot assist with your transportation, contact the American Cancer Society's Road to Recovery program at 1-800-227-2345, or stop by the Cancer Resource Center at WVCI to learn more.)

Celebrating success
A few months after her clinical trial treatment ended, Betty received a CT scan and bone marrow biopsy that proved her leukemia was no longer active, signaling that no further treatment is needed for now. Dr. Sharman monitors her progress with blood tests every three months, and her case is followed for three years as part of the clinical trial.

Today, she's as active as ever and continues to work, exercise and spend time with her family and friends.

"I feel lucky to have been connected to the right doctor at the right time," she says. "I have never been physically stronger in my life than I am now."

Learn more about clinical trials
Clinial trials for other cancer types, including lymphoma, breast, prostate, lung and others are also available at WVCI. Learn more about available trials and read other patient stories here.

By WVCI


Posted September 20, 2012

Comments

  • susan mcbrine August 24, 2013 2:49 AM

    Love Dr Jeff Sharmas blog and his great attitude with patients. wondered if hed read Role of Pulmonary inflammation in cll by Chaya Venkat about taking asthma drugs as a preventive .  interested in his opinion - does dr sharman have email??

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