When we talk about melanoma research, we tend to focus on the incredible progress that has been made and the promise this holds for patients and their families. It’s true, today’s patients have more treatment options than ever before and are living longer, healthier lives because of it. Some are even being cured. Unfortunately, what’s true in aggregate, doesn’t necessarily ring true for every patient. Curran Schiefelbein knows this all too well.
That’s because for Tim Schiefelbein, Curran’s husband and the father of their two children, John and Henry, melanoma research hadn’t advanced enough in time to save him. Tim died – surrounded by his loving family – just over three years after first being diagnosed.
It all started in October, 2014, when Tim just didn’t feel well. This was unusual; he normally was quite healthy. After a few days, he went to his doctor. A CT scan revealed that his indigestion was actually caused by the invasion of tumors throughout his abdominal lining.
Without a specific diagnosis, they made the trip to Massachusetts General Hospital (MGH) to see the GI oncology team. The pain worsened as they tested for specific cancers – it wasn’t lung, testicular, or esophageal cancer. After several days, Tim could no longer eat and was admitted into the hospital. At this point, a PET scan had revealed the cancer had spread to bones, but the pathology team was still working on a specific diagnosis. Tim received palliative care until treatment could start. Finally, after another week, Tim finally had a diagnosis of melanoma.
It was then that Tim and Curran were introduced to Dr. Ryan Sullivan. Dr. Sullivan, a medical oncologist by training and two-time MRA funded investigator, would be with Tim and Curran throughout their journey with melanoma.
“I am so grateful that we had Ryan throughout these years, “says Curran. “He treated us like peers – and because we were both engineers, we had technical questions and a realistic sense of the odds. It’s important to have an oncologist you trust and feel a good connection with, because hopefully you’ll be with this person for a long time.”
Due to the high tumor burden, the doctors started Tim on chemotherapy. “At this point, I wasn’t sure if he was ever going to come home,” remembers Curran. “He was so sick that the chemo didn’t make him feel worse – it actually made him feel appreciably better. He finally was able to eat and get out of bed a day later.”
Two days later, with his soft tissue tumors receding, Tim went home.
While chemotherapy isn’t widely used to treat melanoma today, in some cases such as Tim’s, it can be helpful as a rescue treatment. “The chemo wasn’t going to cure him – but it cleared out the soft tissue tumors and gave him time to try other treatments,” says Curran.
First, they tried the anti-CTLA-4 checkpoint immunotherapy ipilimumab (Yervoy®). After his cancer progressed on that drug, they tried the anti-PD-1 checkpoint immunotherapy pembrolizumab (Keytruda®). While these same treatments were successfully treating other people with melanoma, neither worked for Tim. Dr. Sullivan applied to get Tim into an Adoptive Cell Transfer clinical trial, but due to his bone tumors, he was not considered a good candidate for the study. In September of 2015, Tim’s melanoma had metastasized to his brain.
Upon initially determining that Tim had melanoma – almost a year prior – the team also determined that his tumors harbored a mutated BRAF gene. This made Tim a candidate for the newly approved targeted therapy combination, Dabrafenib (Tafinlar®) + Trametinib (Mekinist®). By interfering with the function of abnormal molecules – in this case BRAF and MEK – that regulate cell growth, these drugs are able to slow or even stop the growth of melanoma cells, without harming healthy tissue.
It worked well for several months. The brain metastases disappeared. Then, as often happens with targeted therapy, Tim’s body became unable to tolerate the treatment. His cancer was under control, but he developed high fevers and uncontrollable tremors that made it impossible to work or enjoy family time.
Fortunately for Tim, in the year afforded him by dabrafenib + trametinib, a second targeted therapy combination, Vemurafenib (Zelboraf®) + Cobimetinib (Cotellic™), had earned FDA approval. This also worked well and gave Tim another 14 months of near normalcy.
“At this point, we prayed that the FDA would approve another BRAF-targeted therapy,” says Curran.
A third targeted therapy combination, Encorafenib (Braftovi™) + Binimetinib (Mektovi®), at the time in clinical trials, would not be approved in time to help Tim and in the fall of 2017, Tim’s melanoma progressed. He cracked a vertebra and had breakthrough metastases throughout his body. The available targeted therapies had been exhausted.
Chemotherapy had worked so well last time, but this time it didn’t. A small seizure in November meant Tim could no longer drive, and as his tumor burden increased, he was losing the ability to eat and move around. In the hospital, they revisited Dabrafenib (Tafinlar®) + Trametinib (Mekinist®), but to no avail. In a last-ditch effort, they tried the combination of ipilimumab + nivolumab along with radiation. The radiation caused significant pain and made it difficult to breathe.
Curran rarely left Tim’s side over his three-week stay at Massachusetts General Hospital. Family and friends took care of all the day-to-day concerns at home, so that she could focus on Tim’s needs.
“We needed a miracle,” says Curran.
The medical miracle wasn’t meant to be, at least not for Tim. Tim went home for six days, and then started hospice.
“We were home for our oldest son’s birthday – he turned nine – and then had one last Christmas together with just the four of us,” says Curran. “It was the most awful, and the most profound, time of our life together.”
The miracle that they did receive was the tremendous love and support from their community.
Tim’s family and close friends were with him for the last time on December 30, 2017. Just over three years after his diagnosis with Stage 4 melanoma, he ran out of time.
This isn’t the typical narrative used to highlight the importance of ongoing melanoma research. For Tim and Curran – research alone wasn’t enough to keep them from saying goodbye far too early.
However, even for Tim, research mattered tremendously. The research performed in the ten years prior to his diagnosis meant that there was a single BRAF+MEK combination therapy available when he needed it, and another in the pipeline. Without that groundbreaking work, his children would have had far less time with their dad. “We went hiking and we made memories. We made it work – and I’m so proud of how we did it,” says Curran.
Research mattered to Tim on a professional level as well. He loved to “talk shop” with Ryan ( Dr. Sullivan) about the research side, and read up on exactly how an MRI machine worked—at the subatomic level. In Tim’s last days, Curran inquired about donating his tissues to MGH’s rapid autopsy program. “We knew how much donated tissue matters to advancing melanoma research – and Tim always believed that if a problem was worthwhile, he should give it everything he had.”
Today, Tim’s tissues – his aggressive melanoma cells – are being used in experiments that will help usher in the next generation of melanoma treatments.
For Curran, it’s important to share her experiences and Tim’s story. “We aren’t unique. Cancer patients don’t have to be super heroes. That mindset can inspire people, but it can also put so much pressure on patients and families,” says Curran. “Tim was amazing, but at times it was all he could do just to be himself.”
“Tim’s story should be out there because there are lots of patients who aren’t going to get a cure in time,” says Curran. “It’s okay to fall down. This is hard. Our friends and our families picked us back up, again and again.”
When asked what research means to her and her family, Curran replied: “It means everything. If we don’t have research, we don’t have hope.”
In loving memory of Timothy "Tim" Schiefelbein. 1972 – 2017
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