by Mona Jhaveri - March 25, 2021

 

Ralph Sotomayor and his wife, Kena, experienced first-hand the limitations of cancer treatment, the failure of breakthrough medicine and the financial and spiritual blows of fighting and succumbing to cancer.

Kena describes Ralph as a healthy man overall, who had no history of cancer in his family and never smoked or drank. Needless to say, after he had passed a bloody stool and was diagnosed with stage 4 colorectal cancer, it came as a complete shock. Ralph was only 46 years old!

From there, Ralph endured seven months of combination chemotherapy, but his cancer prevailed. His next best option was to become a candidate for an immunotherapy clinical trial.  At the time, this was good news because immunotherapies that enhance the ability of one’s own immune system to interfere with the growth and spread of cancer had shown promise in other cancers. Clinical trials were needed to determine if the same was true for colorectal cancer. When Ralph began his immunotherapy trial, he found the side effects bearable compared to his initial chemotherapy. He was therefore hopeful that this could be his treatment of choice for dealing with his disease. Unfortunately, immunotherapy did not work for Ralph. His cancer did not regressing at all, in fact, it was getting worse. 

Kena and Ralph knew they were running out of time and that in order to continue Ralph’s treatment, they needed to look elsewhere. They exhausted all treatment options that were presented to them by their clinical team. At this point, Kena and Ralph were losing hope.

“Cancer is, if it’s metastatic, like someone putting a loaded gun to your head. It’s just a question of when,” Kena stated.

Though options were limited, they were desperate to continue trying, if not for themselves, for their two daughters, Sophia and Scarlett. Kena recalled, “[Ralph] had failed chemotherapy. He had failed the trial. Really, there’s nothing else you can do at that point.”

Luckily, they were able to find a physician that was willing to treat Ralph post-trial with a newly developed immunotherapy, despite his poor prognosis. The doctor carried out a treatment plan of Cyramza, a chemotherapy drug, along with Opdivo, an immunotherapy drug.

Opdivo was normally used to treat skin and lung cancer and was not yet indicated by the FDA as a treatment for colorectal cancer. While the doctor agreed to treat Ralph, he did not take any health insurance, and each appointment added $2,500 in expense, which did not account for the cost of the medications.

Ralph and Kena practically cleaned out their savings – what they had once dreamed of using to buy a new house or perhaps support their children’s college tuition, they were using towards Ralph’s treatment.

“It’s very expensive,” Kena shared, “It’s a nightmare to know where you’re heading, especially with young children.”

Our healthcare system was not equipped to treat Ralph with FDA-approved drugs or suitable follow-up care. Further, breakthrough immunotherapy proved not useful. Despite every effort, Ralph was not able to be saved. He passed away in May of 2015, at the age of 47 leaving behind a his beautiful family and many friends who will miss him forever. Ralph’s heart touched so many, so deeply.

Ralph’s cancer journey underscores the magnitude and complexity of our collective cancer burden that we have yet to appropriately address. Ralph was an outlier in many ways – with no understanding as to what caused his cancer, a poor response to standard colorectal cancer treatment, an immunotherapy that worsened his cancer, and at an age when people do not normally get cancer.  Through Ralph’s journey we are more sober to the possibility that the outcomes of the so called “outliers” could become more and more normal, and the task at hand of beating cancer is that much harder.

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