The following are patient testimonials from cancer patients that have participated in a clinical trial at the Virginia G. Piper Cancer Center.
Gordon Hunt, 68, a retired life-insurance salesman from Phoenix began noticing discomfort in his neck several years ago. After seeing a series of specialists, a calcitonin test finally confirmed that he had an advanced case of metastatic medullary thyroid cancer (MTC), a rare endocrine gland cancer affecting the thyroid and lymph nodes in the neck and upper chest.
Hunt endured several surgeries that included the removal of his thyroid and lymph nodes in his neck and chest. He joined a clinical trial at Scottsdale Healthcare’s Virginia G. Piper Cancer Center Clinical Trials testing a drug called cabozantinib, which blocks the gene that causes MTC.
The U.S. Food and Drug Administration approved cabozantinib on November 27, 2012.
Following his most recent surgeries more than two years ago, Hunt’s calcitonin levels dropped from a one-time high of 3,300 picograms per milliliter when he was first diagnosed, to about 500 pg/ml.
After receiving cabozantinib since February 2011, Hunt’s calcitonin levels are down to about 250 pg/ml, indicating that the cancer might still be in his system, but he has had no detectable tumors.
“I feel like this saved my life,” Hunt said. “I’m just thankful for it, because I’m sure I’d be probably ready for another surgery of some sort if I hadn’t been on the medication,” said Hunt, who also expressed gratitude to the entire staff of the Virginia G. Piper Cancer Center clinic. “They’ve been responsive to my every need.”
Hunt said he at first suffered side effects, including vomiting, diarrhea, stomach pains, weight loss and constipation. But by lowering his dosage, the side effects eventually diminished, he said. Dose reduction was required in 79 percent of clinical trial patients, according to the FDA.
Hunt receives monthly doses of the drug along with tests for calcitonin, as well as quarterly scans for tumors.
Between doses, he and his wife Nancy, a retired schoolteacher, travel extensively, including trips in the past year to California, Texas, Missouri and Australia. “We’re still active, so that’s a good thing,” said Hunt, noting that the couple, who have lived 47 years in Phoenix, still go regularly to the gym and are active in their church.
“I’m excited. I played a part in making it (FDA approval) happen,” Hunt said. “I thank God that I was chosen to take part in obtaining the approval of the medication. If it works for me, it’s going to work for other people, and that’s good.”
A Physician’s Fight Against Cancer
Dr. Charles Haerter
Dr. Charles Haerter first experienced symptoms during the summer of 2006. He had several episodes of severe pain under his ribs on his right side. “To me, as a physician, they seemed to be pretty typical gallbladder attacks. But two workups found no issues with my gallbladder and failed to identify a cause of my pain,” Charles said.
Later that year, he started experiencing pain in his lower left abdomen. Charles underwent many tests, most of them focusing on his intestines. But one, a magnetic resonance cholangiopancreatography (MRCP), did image his pancreas, which looked normal. Because no one could come up with a better diagnosis, he was treated with anti-inflammatories in case he had inflammatory bowel disease.
The anti-inflammatories took away the pain, but Charles still didn’t feel right. He then started to lose weight and his energy went away.
“By this time it was January 2008. I met with my family doctor, and he said he would get to the bottom of things. I had a CAT scan, and there, in the tail of my pancreas, was what looked like a tumor about four or five centimeters in size. An endoscopic biopsy several weeks later confirmed that it was pancreatic adenocarcinoma.”
Charles was finally diagnosed with metastatic pancreatic cancer in March 2008, more than a year and a half after he had first experienced symptoms.
“I knew the outlook was not good and prepared to die. I was told that surgery was not an option, because my cancer had spread to some of my lymph nodes and my liver, and that if I was lucky I might have one year left to live,” he said.
“But I did not give up hope completely. My daughter-in-law, who is a physician and was with us when I was told of the grim prognosis, mentioned that she had heard, just days earlier, about a clinical trial that was going on at Scottsdale Healthcare for patients with metastatic pancreatic cancer that was having amazing results. I knew I wanted to give it a try. Within a month of receiving the trial drug - a nanoparticle form of paclitaxel (Abraxane) - I started feeling better.”
Almost immediately Charles had a better sense of wellbeing. He was also optimistic that the treatment might add a few more years to his life.
“It has. It is now five and half years since my diagnosis,” he said. “I have suffered from a variety of side effects that have meant that at times I have had to stop treatment with the drug. But each time I have restarted treatment, my cancer has responded. My pancreatic tumors have never disappeared completely, but they always shrink in size, and I feel as good as you can feel with pancreatic cancer.”
“The treatment I have received has been almost exclusively through clinical trials, and I have received the best care that anyone could have. But many doctors and members of the general public do not know about the clinical trials that are going on. We need to do a better job of educating people and getting them involved, because we need more people and more studies if we are to help more patients.”
Stand Up to Cancer
Phoenix resident Dick O'Neall was diagnosed with advanced pancreatic cancer shortly after telling his doctor that he was experiencing a slight discomfort in his ribcage in April 2011. He was given about six months to live.
His son, who works as an information support specialist at Scottsdale Healthcare’s Virginia G. Piper Cancer Center, arranged for him to get a second opinion there. O'Neall was accepted into a clinical trial at Virginia G. Piper Cancer Center Clinical Trials, which used the chemotherapy regimen being studied for pancreatic cancer, Gemcitabine and Abraxane, in combination with a Hedgehog pathway inhibitor, a targeted therapy that breaks down the outer covering of the cancer cell to increase the therapeutic effect of the chemotherapy. On June 1, 2011, he began the trial using this drug combination.
"It was the first time I had heard anybody talk about anything hopeful in regard to my future," O'Neall said. The chemo was hard on his body, but it proved worth it. "They were testing me all the time, and almost immediately, my tumors began to shrink."
Today, 16 months after his diagnosis, O'Neall said he feels great, and is continuing treatment on the Abraxane/Gemcitabine regimen. O'Neall, who with his wife, Karen, runs a mentoring program for youth at Calvary Community Church in Phoenix, said he's aware that there is no cure for the disease and that the cancer can return.
"When I look back now, and I can't emphasize enough the compassionate care I received," he said. "They gave me hope to know that there was something that could be done for me, and that I didn't inevitably have to surrender to this terrible disease."
Virginia G. Piper Cancer Center Clinical Trials, led by chief scientific officer Daniel Von Hoff, MD, received an $18 million, three year grant in 2009 to become part of the Stand Up to Cancer “dream team” to study how to deprive pancreatic tumors of nutrients that cause them to grow.
Registered nurse Katy Schroeder, pancreatic-cancer care coordinator for the clinical trials, said while her patients have a bleak long-term diagnosis, the dream team doctors empower patients and staff. "Working with Dr. Von Hoff and his passion is infectious," Schroeder said. "He just makes everyone believe that there is hope and that we can provide patients with a treatment."
A New Lease on Life
Arizona resident Evelyn Sorensen is in a far different place today than she was six months ago, thanks to a cutting-edge cancer clinical trial being conducted at the Virginia G. Piper
Cancer Center at Scottsdale Healthcare in partnership with Translational Genomics Research Institute (TGen).
When Sorensen was diagnosed with stage two cervical cancer two years ago, she underwent rounds of chemotherapy and radiation. But the cancer eventually spread to her lymph nodes. Doctors told her they were inoperable, and there were no other standard treatment options available to her.
“I was out of options, and I wasn’t happy to hear that,” said Sorensen, a resident of Mesa. “I’m 47 years old and I’m not ready to say goodbye just yet.”
Sorensen then learned of the BIND-014 clinical trial being conducted through Virginia G. Piper Cancer Center Clinical Trials, and quickly joined the study in August of 2011. Virginia G. Piper Cancer Center Clinical Trials is a partnership between Scottsdale Healthcare and TGen that treats cancer patients with promising new drugs.
BIND-014, created by BIND Biosciences in Cambridge, Mass., is being studied in patients with advanced or metastatic cancer. It uses microscopic drones to deliver medicine directly to cancer cells, increasing the drug’s effectiveness and minimizing side effects. The study is led in Scottsdale by Dr. Daniel Von Hoff, chief scientific officer at Scottsdale Healthcare and physician-in-chief at TGen.
After her first treatment on the study in September 2011, Sorensen’s tumors began to shrink rapidly. Today, doctors say her cancer has diminished substantially, although she still takes the medication to maintain the results. Sorensen is beyond thrilled with the outcomes.
“I didn’t even have any of the horrible side effects that are associated with chemotherapy such as weight loss or hair loss,” she said. “I even joked with Dr. Von Hoff that I thought he was giving me a placebo because I didn’t feel anything!”
Scientists and oncologists say this new nanoparticle treatment could be a big step in the fight against cancer and have high hopes for the future of this kind of targeted therapy. “Cancer cells are very good at erecting a defense against foreign harmful substances,” said Ramesh Ramanthan, MD, medical director of Virginia G. Piper Cancer Center Clinical Trials. “We think that nanoparticles may be the solution to penetrating cancer cells and delivering cancer drugs more effectively.”
As for Sorensen, the future is looking much brighter than it did for her six months ago. She is now strong enough to return to work and is back to swimming and enjoying her life. “It’s so hard to explain because at one moment you’re trying to get your affairs in order and you only have a year to live, and then all of the sudden you are offered hope, a chance to live,” said Sorensen. “And I intend to take advantage of every moment of it.”
“I have nothing but admiration for the highly experienced staff at TGen and Scottsdale Healthcare. Dr. Von Hoff and Dr. Ramanathan are world authorities in pancreatic cancer research. It would be difficult to find this type of care and treatment anywhere else. The lab technicians, pharmacists and administrative staff are all very special people.
Help When Others Were at a Loss
Marie Petrini, who has been diagnosed with melanoma, participated in a clinical trial at another Valley organization. When she became allergic to the medicines being used, the experts there “had no idea what to do for me.”
Fortunately, Marie found her way to the Virginia G. Piper Cancer Center, where she is participating in a clinical trial of a completely different medicine—and with successful results so far.
“I’m delighted to be on this new medication. It’s been just over a year,” said Maria, noting that the staff at the Cancer Center, who she says “are like family,” made a cake to help her celebrate the occasion.
While she is happy about the results of her new medication, Maria also “feels very good” about helping others by participating in a clinical trial. Her involvement has helped to determine appropriate dosages for the new medicine.
“For me, the clinical trial has worked marvelous. I’m very grateful for having this. If not, I don’t know where I’d be today,” Maria said.
The Power of Hope and a Positive Attitude
Aida Castro doesn’t mind driving from her Glendale home to the Virginia G. Piper Cancer Center at Scottsdale Healthcare, where she participates in clinical trials of new treatments.
After all, she says, the Cancer Center provides hope for beating the pancreatic cancer she was diagnosed with in July 2008.
Before coming to the Virginia G. Piper Cancer Center, Aida was given 11 months to live—and little, if anything, to be optimistic about. She began treatment, but wanted options in case it didn’t work. After changing doctors, she learned that clinical trials at the Virginia G. Piper Cancer Center offered the hope she desperately needed.
“I’m confident they are doing a good job. If the new medicine I’m getting now doesn’t work, there are other studies I may be able to go into,” said Aida, who has participated in two different clinical trials.
While she doesn’t hesitate to recommend the Virginia G. Piper Cancer Center to anyone facing cancer, Aida is equally quick to endorse a positive attitude—just like the one exhibited by the staff at the Cancer Center.
“They have very, very good people working there. They’re always warm and positive and take care of us with a good attitude—which is important for patients. They have everything you could ask for,” Aida said.
If you have any other questions or concerns, please contact us as we will help guide you in the right direction.
Individuals seeking information about eligibility to participate in clinical trials at the Virginia G. Piper Cancer Center at Scottsdale Healthcare may contact our Oncology Nurse Navigators at 480-323-1339; toll free at 1-877-273-3713 or email email@example.com.