Andy was diagnosed with clear cell kidney cancer in 2003 at age 42. He was traveling for business when he developed low-back pain and various other urinary symptoms. Thinking he developed a kidney stone, he decided to call his family doctor, who sent him for a CAT scan. Within minutes his phone was ringing- his physician calling to tell him he had a mass on his kidney that looked like cancer. As the doctors began their workup, Andy began his research.
At that time, there were limited medical treatments for kidney cancer, so surgical treatment was his first option. Andy underwent a radical nephrectomy to remove his entire left kidney including the 13cm tumor and additional lymph nodes. He was fortunate at that time, to find out that his cancer had not spread. He continued his yearly follow-up and repeat scans for the recommended years to find his cancer had not returned- he was “cured”. Life moved on with a better appreciation for the little things.
Although cured, Andy’s urologist pushed that he at least continue yearly chest x-rays, as kidney cancer is notorious for being “sneaky”, laying dormant for many years before returning. 11 years later, Andy’s cancer returned in his lungs, a 4cm mass appearing on an x-ray. A biopsied confirmed our worst fears; Andy was now considered stage IV. The next few weeks consisted of numerous doctor appointments- oncologists, cardiothoracic surgeons, and pre-op clearances. Andy had his right lower lung and mediastinal lymph nodes removed and recovered from surgery quickly- he was determined to heal as fast as possible so that he could start treatment.
While healing from surgery, Andy spent hours a day researching kidney cancer treatments and clinical trials. He quickly joined patient forums, and became a Kidney Cancer Association and ASCO patient advocate through his research. He traveled all across the country to major oncology conferences, sharing his experience as a patient with physicians and others. He firmly believed that patients should direct their own care, with a team of physicians advising them as to what was best. He provided support and guidance to many other kidney cancer patients throughout his each of his treatments.
Andy formed a strong relationship with his local oncologist, Dr. Nair, and made appointments for consultations with some of the top kidney cancer physicians in the world. Our family traveled to Memorial Sloan Kettering in New York City, drove to the Cleveland Clinic in a snowstorm, and to Fox Chase Cancer Center in Philadelphia. The consensus was the same- Andy should enroll in a clinical trial, one that thankfully was open 5 miles from our home at Lehigh Valley Health Network. Andy understood that in this clinical trial he would be randomized, 50/50, to the standard of care arm or a new immune therapy. In true Andy fashion, he told us all how eager he was to become a part of research and history- always commenting that the results of this study would help millions. Andy was randomized to receive the standard of care arm, Sutent, and began his treatment shortly after. He continued to be active throughout his clinical trial, working closely with his care team and Dr. Nair to manage the drug side effects. The trial dictated that his first scan be at the 12-week mark, and he remained hopeful for regression in his disease. Unfortunately, we learned that Andy’s cancer was smart, and quickly found new mechanisms for growth. Andy was taken off his clinical trial following his scan and he immediately compiled his list for top second-line treatments- he knew what he really felt would work- a new anti-PD1 drug that had been making national headlines in both kidney cancer and melanoma due to its success.
Unfortunately, this drug had not yet been approved and would never be covered by his insurance. Dr. Nair and Andy’s family worked tirelessly, gathering evidence on the effectiveness of the drug and petitioning Bristol Myer Squibb to allow Andy to receive this medication, for free, as it could save his life. We received the news just days later that BMS would provide Andy with this drug, at no cost, for one year. Our family was ecstatic, to say the least! Andy was the first patient EVER at Lehigh Valley Hospital to receive this drug for kidney cancer- a “pioneer” as Dr. Nair joked with him. Since then, countless patients received this drug through BMS and it was most recently was FDA approved for kidney cancer. With a hopeful heart, Andy went to the infusion center every few weeks for his treatment. He required multiple hospitalizations for autoimmune reactions, but this was a good sign! His immune system was revved up and fighting! Andy continued living and loving life while on treatment. He arranged his treatment schedule to travel to Italy with his family and created lasting memories amongst the Tuscan vineyards and around large dinner tables. Only time would tell if his cancer would respond.
Just days after returning from vacation Andy’s family woke up to him short of breath and very confused. An MRI revealed he had brain metastasis and his immune system had also attacked his lungs- he could no longer safely receive his treatment. Once again, we felt fortunate to live near a large cancer center with state-of-the-art treatment options; Andy received gamma knife radiotherapy to three brain mets as a same day procedure.
Faced with another decision, Andy continuously researched what would be best for a third line of treatment. He was strong; the only thing revealing how fast his cancer was spreading was the head to toe, black and white imaging that Dr. Nair scrolled through every 12 weeks. Continuing to search for answers on how Andy’s tumor was evading treatment, his tumor was sent for molecular testing. It was revealed that Andy’s tumor harbored a pTEN mutation, which had been known to respond to a type of medication known as an mTOR inhibitor. With this new knowledge, Andy moved on to receiving Torisel.
As Andy continued on to his third line of treatment it became clear that we were running out of time. Our family made countless memories and continued to live Andy’s motto of “go big or go home”. We not only celebrated birthdays and anniversaries, but life’s little moments that are too often overlooked. Andy was so happy to see his children continue to succeed in their lives and careers- he encouraged us all to tell each other how much we loved each other each day, and be there for one another at all times. He would continuously say “Family first. Always”.
Once again, we learned that Andy’s cancer had worked around the mTOR pathway and continued to grow. Andy’s strength was declining, but he knew each of these drugs was buying him a little more time. He moved on to one last treatment, Inlyta. Throughout all of these treatments Andy required numerous hospitalizations and intravenous steroids due to long lasting effect of immune therapy. Just a few days of his new treatment and Andy woke up in severe abdominal pain- he had perforated his bowel due to severe diverticulitis. Completely unrelated to his cancer, but a major set back in his treatment. Andy was taken for emergency surgery that evening to clean out his abdomen and resect his bowel. He remained in ICU for a few days, until returning to his “home”- 7C Oncology. While Andy’s body tried to fight infection and maintain fluid balance, his sole kidney quickly began to fail. It was clear to Andy and his family that his body was beginning to disappoint him, and we were spending too much time confined in hospital walls. Andy called his family together and asked them to take him home.
The 7C team coordinated his transition home effortlessly. Andy was brought home that day, on hospice, right before a major snowstorm hit. He told everyone how much he loved them, and reminded his family of the values he had instilled in them. He repeatedly told them of how successful they were, and that he knew they would be okay- so long as they stuck together. While home, we were all reminded how loved and supported Andy was by the countless around the clock visitors he had. Andy passed away peacefully 9 days later but not before sharing his lasting wish- for his family to create a foundation in his name to help other kidney cancer patients through research and patient education and advocacy. His legacy lives on, not only through, his children, wife, and family, but his work and effort to always help others.
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