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Abby Jones Patient Profile

Abby has her hands, and her heart full. With three young children she and her husband spend much of their time today like any other young family, running from one activity to the next, tending constantly to the needs of their children. Seven year old Judd is currently into golf and baseball, while the two year old twins Noah and Ellie, like any toddlers, keep mom and dad on high alert and exhausted. But, this family lives with an unusually heightened sense of gratitude for every exhausting moment together. It is hard to imagine that just a couple of years ago Abby was battling four primary cancers resulting in multiple surgeries and a dangerously low heart ejection fraction, meaning that the total amount of blood being pumped out of the left ventricle of her heart was well below normal. It all began in February of 2014, not long after the birth of their son. Abby discovered a sensitive lump in her right breast. A biopsy revealed it was cancer (ER/PR+ invasive ductal carcinoma).  As with every surprising diagnosis like this, her world and that of her family turned suddenly on its axis. Even more shocking was the discovery of a second tumor in the left breast of a different type (ER/PR/HER2Nue+)! Here was the unusual situation of two primary tumors developing at the same time. But, there was more.

“The low moment over the last 6 months took place in a Wendy’s Drive-thru,” her husband Ross wrote. He goes on to explain, “After some extensive discussions with Fertility specialists, Abs and I decided to go grab lunch and talk things over. Literally just minutes away from stroking a 5-figure check and ‘hedging our bet’ on the possibility of having kids down the road; the phone rang and the results of the CT scan were back. That’s when we heard about the kidney. That’s when we heard about the spot on the lung. That’s when Abby really really cried. That’s when I finally didn’t know what to say. That was truly the day things changed.” In March 2014 Abby added adenocarcinoma in her left lung and renal cell carcinoma (chromophobe) on her left kidney, to her cancers.

Four primary tumors in one body. It is almost unheard of. It turns out Abby has a rare genetic disorder known as Li Fraumeni Syndrome. This is a disorder that greatly increases the risk of developing several types of cancer. It impacts the gene TP53 which is a tumor suppressor gene that is supposed to help control the growth and division of cells. This explained the phenomenon and demanded an aggressive course of treatment.

Abby’s cancer therapy began in April 2014 when she had a nephrectomy of her left kidney and a wedge resection of the lower left lobe on her left lung. She immediately had to then turn to treatment for the breast cancers and in May began a regimen of chemotherapy including: Taxotere, Carboplatin, Herceptin and Perjeta. Herceptin, in particular, is known to have adverse cardiovascular impacts, which it did for Abby. On August 25, 2014 her husband posted this request on their blog:

“If you’re still praying for us, add Abby’s Heart to your prayer list. She’s still having some issues with her heart exams (as a result of her Meds), and therefore she needs to see a Cardiologist. Nothing big, but these heart problems are causing her to have to forgo a few drugs which are CRUCIAL to her treatment.”

Her ejection fraction dropped dramatically from the normal range of 60-65% to 40-45% after 4 rounds of herceptin and perjeta. A normal left ventricular ejection fraction (LVEF) ranges from 55% to 70%. The drop in her LVEF resulted in a need to delay her treatments. Too often patients are forced to choose between cancer therapy and heart damage. The complexity of Abby’s situation demanded a multi disciplinary team for effective treatment. She was blessed to live near a cancer center that has a cardio oncology program in place. Moffitt Cancer Center in Tampa, FL began its cardio oncology program in 2015 under the leadership of Dr. Michael Fradley who serves on the Board of the International Cardio Oncology Society (ICOS). Michael was engaged to monitor Abby throughout the course of her treatment in coordination with her oncology team.

In this program cardiologists and oncologists work in collaboration to more effectively manage cancer therapy, particularly when there are cardiovascular complications involved in that therapy. Abby says she was blessed to have a team located in one place, working together to walk her through the complexities of her treatment. She did not have the burden of scheduling appointments with cardiologists and oncologists at different times in different locations. Nor did she face the risk of vital information being missed in the communication across disciplines. Her team was in one place working as one unit.

After the completion of her chemotherapy Abby had a bi-lateral mastectomy. Unimaginably, her ordeal was not over. In September of 2016 she had another tender spot near her sternum. A biopsy revealed a third primary breast cancer, this time it was triple negative, meaning it tested negative for estrogen receptors, progesterone receptors, and excess HER2 protein. Unbelievably, she now had a third different type of breast cancer. Once again she was monitored by the cardio-oncology team at Moffitt as she was treated with the “red devil,” Doxorubicin. The team prescribed a low dose of blood pressure medicine as a preventative therapy and this enabled her to complete another demanding round of chemotherapy without interruption. This led to yet another surgery in October 2016, a lumpectomy.

Abby has a bright outlook on her life and future. She attributes much of that to her confident trust in God. In the midst of her ordeal she and her family were sitting in church listening to their pastor who, in her words “said something that stood out….. ‘So Much Has Happened.’” She explains, “This powerful phrase was the focus of the morning and certainly something that spoke to us. In a nutshell, the point was that God sees us as his perfect, beautiful, amazing children…..We only see the part of us that has been blemished because ‘so much has happened.’ He sees our best. We struggle to see who we were before our bumps in the road.” Few of us would describe what she experienced as a mere bump in the road, but with strong faith and high quality treatment Abby’s last scan in September 2019 was clear of cancer!

Abby says she and her family have learned to “live in the moment, thankful for God’s healing touch…I serve a powerful God,” Abby testifies, “who continues to give me peace and strength for whatever may come my way.” Abby’s treatment path illustrates the power, wisdom and impact of the cross-disciplinary care that cardio oncology provides.

Patient Profile: Michael’s Poisoned Heart

I first met Michael at a church rummage sale. He was not shopping, he was the honoree. At age 30, Michael needed a heart transplant and the church was raising funds to help offset some of the expenses. Michael is a laid back, affable young man who has a great sense of humor and loves rap music. His first heart failure at age 23, hit him on a trip to Pueto Rico when he felt strangely weak. Upon his return to his home in Tampa, Florida, he went to the emergency room and eventually a cardiologist diagnosed the issue. At age 25 Michael had a second heart failure which led to the implantation of a pacemaker that, in his words, proceeded to jolt him unexpectedly and repeatedly. Finally, at age 30 his heart failed again and after a second pacemaker, he was told the only hope was for a heart transplant. Six months later he was admitted to the hospital to wait. And he did. Five weeks and one false alarm later on March 3, 2011, Mike endured the trauma of receiving a new heart.

Having overcome the cancer, the residual impact for his heart would eventually catch up and again nearly cost him his life. In the Fall of 2013, he went to Tampa General Hospital with chest pains. After preliminary testing, the recommendation was made that he see a Cardio-Oncologist, Dr. Eric Harrison of Tampa, FL, also Chairman of the Board of the International Cardio-Oncology Society.

His original heart, however, was not naturally diseased. Like many, Mike’s heart was poisoned. Born to a single mom, at age three, she noticed a lump between his legs. Her little boy was soon, and for her, surprisingly diagnosed with a rare muscle cancer, Rhabdomyosarcoma. He was sent to the Children’s Cancer Center at the University of South Florida to begin treatment. To say his mother was shocked is an understatement. Children don’t get cancer, so she thought. There he began what, at the time, was the typical regimen of chemotherapy drugs (Vincristin, Cytoxan, Adriamyacin). Six weeks on two weeks off, from South Tampa to North every day by public bus. Mike and his mom did not own a car at the time. The bus drivers learned the daily routine. Some greeted them by name. Others learned when to pull off to the side of the road mid-route for a sick little boy who needed to vomit.This routine continued for a year.

After twelve months of chemo and a month of radiation Mike and Mom had a short reprieve. Six months later, Mom saw it again. Another tumor in his groin. The brutal routine resumed. Early morning trips to the bus stop, sometimes having to carry her weakened child. Bus ride to the hospital. Bus to school. Work cleaning houses all day. Collect her little boy. Some days he was too sick to go to school so he accompanied Mom at work in a stroller. For fourteen long months the treatments continued. One day at the hospital a worn out preschooler looked at his nurse and said, “I’m going to be a nurse when I grow up so I can give you a shot!” Michael’s sense of humor prevailed.

There is no doubt that the oncologists who treated Michael cared deeply for him. He knew they were doing all that they could to heal him. He talks fondly of the good memories. He met Joe Dimaggio and befriended an NFL linebacker, Scot Brantley. They saved his life. But, Michael still represents a goal for us. The International Cardio-Oncology Society (ICOS) exists to eliminate the repetition of Michael’s story. Our vision is to eliminate heart disease as a barrier to effective cancer treatment. As a result, more and more children like Mike are being treated in ways that prevent the dramatic consequences he experienced. There’s much work ahead for the ICOS in all areas of Cardio-Oncology, and Mike represents the importance of continued research in pediatric Cardio-Oncology.

Today Michael is thriving. He completed his GED and is back to working full time. He and his mom continue to enjoy a life filled with friends, family, serving others and laughter, lots of laughter. They both love to laugh. More laughter and less suffering, that is cause worthy of all our shared labors.

Harry: Dodging Death

Harry was handed a death sentence by the medical establishment. Diagnosed with Non-Hodgkins Lymphoma in l989 he was told simply, “get your affairs in order.” He chose not to resign himself so quickly. Living in Tampa, FL and serving as the Vice President of a large regional bank, by all outward measures Harry had the world by the tail. He had previously made his mark in the hospitality industry opening and managing hotels for Holiday Inn and Ramada Inn. He was the youngest employee in company history to be tapped as a general manager. With two children to care for, a growing business and presumably years of vibrant life before him, the diagnosis hit like someone slamming on the brakes unexpectedly.

Having been recommended to the National Institute of Health in Washington, D.C. and arriving for his first consultation, he was told there was no record for his appointment. The attending physician agreed to see him that evening after hours. A merciful provision. Harry then began a grueling cycle of weekly flights back and forth from Tampa for weeks of treatment. When radiation commenced, he wisely asked his doctor “how is all of this going to affect my heart?” The answer: “We will know in ten years!” And indeed, he would – he got 20 years.

Having overcome the cancer, the residual impact for his heart would eventually catch up and again nearly cost him his life. In the Fall of 2013, he went to Tampa General Hospital with chest pains. After preliminary testing, the recommendation was made that he see a Cardio-Oncologist, Dr. Eric Harrison of Tampa, FL, also Chairman of the Board of the International Cardio-Oncology Society.

Dr. Harrison wanted additional testing and those tests indicated significant future heart issues. It was not long before those issues surfaced. After dinner with a friend in Raleigh, North Carolina, in the Spring of 2014, he didn’t feel well so went back to his hotel room. At that moment a friend “just happened” to call who also “just happened” to be a physician.

At the recommendation of his friend, he immediately drove to Wake Medical and was rushed in for open-heart surgery. Twice during the three-hour procedure his heart stopped. Post-surgery the doctor tried to caution the family that he would not likely be able to communicate for some time. His daughter handed the doctor a note which Harry had just written to her: “There is a case of good wine in the trunk.” Indomitable spirit! He had again dodged death.

In the Fall of 2014 while going through cardiac therapy, Harry noticed pains in his jaws while exercising on the treadmill. This led to Dr. Harrison referring him to Emory Hospital in Atlanta, Georgia, for robotic bypass surgery followed by stent surgery. And yet again he dodged death!

One of the things that makes Dr. Harrison’s work special is his attention to the whole human being who sits before him as well as their family. Harry is a father, a husband, a grandfather, a business leader and a community volunteer. He is also living strong today with Chronic Lymphocytic Leukemia, chronic lung disease and residual heart disease. But he is now under the care of a physician who understands the complex interactions between these diseases.

Harry currently serves on several community boards serving underserved children. His latest passion, forged by his own close enters with mortality, is Hospice counseling. His gentle and compassionate disposition provides comfort to the grieving as he visits with families who have lost loved ones, holds vigils, and leads support groups. Even though his spirit was strengthened by a history of cancer related heart disease, we now know at least some of the complications could have been avoided. It is our hope that no oncologist will ever have to say to a patient who inquires about implications of treatment for the heart, “we will know in ten years.” That is unacceptable and thankfully increasingly unnecessary.

It is vital to remember that we are treating whole people with full lives. People are not numbers on a chart or puzzles to solve. Part of what makes our discipline so exciting is that it reminds us of the complex interactions involved in the care of human beings. Don’t miss the implications of the care you provide whether you are a technician, researcher, physician or nurse. An entire network of relationships surrounds every patient. Having been cared for by many, Harry has now become a caregiver to others. For that we can all be thankful.

The Relief, Challenges And New Fears

Eighteen-year-old cancer patient Patrick McGill lies in his hospital bed while receiving IV chemotherapy treatment for a rare form of cancer at the UCSF Comprehensive Cancer Center Childrens Hospital Aug. 18, 2005 in San Francisco, Calif.