Jay Being Positive Allowed the Doctors Space to Experiment, He Staked his Life In The Science.
Jay Fukazawa was diagnosed with stage 4, unclassified, renal cell carcinoma in late August 2018 at the age of 54. “It took us some time to figure out which subtype of cancer he had. The pathologist wasn’t able to pinpoint it exactly. As it turned out, his was a rare and more aggressive subtype of kidney cancer called unclassified that doesn’t usually respond well to treatment,” Dr. Prezemyslaw Twardowski exclaims, Jay’s medical oncologist. Dr. Twardowski further explains that these kinds of cancers behave differently from clear cell renal carcinoma, a more common kidney cancer. To this day, this subtype of kidney cancer is considered unclassified.
Jay had systemic kidney cancer with an unusual presentation in his body. His cancer spread from the right kidney to the lungs, liver, bowel, sternum, and thrombus. Kidney cancers do not usually metastasize to the bone, but Jay had a suspicious growth on his left rib. “I mean this was a person whose, to say it very plainly, body was riddled with cancer from his kidney and somehow overcame all of that,” says Dr. Jennifer Linehan, Jay’s surgical oncologist who specializes in urologic cancers, reconstruction, and related diseases.
I think I was just really lucky.
– Jay Fukazawa
There were a few key lessons and features of Jay Fukazawa’s case. There is a hallmark in health care, where diseases and illnesses typically affect men more than women. Why? Because men wait. Jay knew he was sick and waited until he was forced to go to the emergency room. Subsequently, Jay was out of time. His health was in a catastrophic state, in which Dr. Twardowski had to create time to heal Jay once he understood the extent of his condition. Jay stated, “I think I was just really lucky.” Lucky to live down the street from a hospital that excels in cancer and had a clinical trial specific for his case; lucky to have picked that hospital; lucky his body responded to immunotherapy as well as it did; lucky he had an expert multi-disciplinary care management team, who stuck with him. There were so many things that could have gone awry and didn’t. Jay could have refused to participate in the recommended clinical trial, yet he was very cooperative. Many may not know but, patients have a lot of say when it comes to their prognosis, which ultimately effects the outcomes, and Jay found no reason to distrust his doctor’s approach. By agreeing to a clinical trial, and focusing on the science in a positive light, it gave Dr. Twardowski time to figure out the unpredictable, how to heal Jay. And Jay needed time, which by all expert’s accounts, he did not have.
Remarkably, Jay’s treatment included surgery and immunotherapy, only. Jay did not require a dietician, radiation, chemotherapy, targeted therapy, and adopted no changes to his lifestyle in any way. “It’s not a common scenario to have this kind of dramatic response that [Jay] had,” reports Dr. Twardowski. He was right. Jay endured very little when it came to side effects. Another unlikely facet to his recovery that made Jay feel…lucky.
In the case review video below, Dr. Linehan and Dr. Twardowski deliberate on the facts of Jay’s amazing remission and his treatment—an undertaking that stretched over 4 years because Jay stayed engaged with his treatments. Dr. Linehan discloses, “a lot of patients will get chemotherapy and they’re going to get it for only like four or six weeks,” emphasizing a common treatment timeframe. “…There’s an end to what they are going to get, but this was prolonged treatment.”
Hear Dr. Twardowski, Dr. Linehan, and Jay Fukazawa in an Unbelievable Account of Complete Cancer Remission.
Clinical Trials and Renal Cell Carcinoma
Jay was offered a chance to participate in an experimental drug trial for his type of kidney cancer. This trial had a two-arm component. A core treatment of an immunotherapy drug combination called Yervoy® and UPDIVO®, and an experimental drug called epicatistat, which should boost his immune response to those two drugs, as stated in the video above by Dr. Twardowski. The experimental drug is still under approval review. However, the immunotherapy drug combination was FDA-approved to treat advanced kidney cancer in April 2018.1 Today, this combination immunotherapy has been approved to treat most advanced metastatic cancers.2 Jay participated in this clinical trial for two years from September 2018 to October 2020.
…I started feeling better.
– Jay Fukazawa
It was quite clear that the chance to participate in this pivotal clinical trial was central to Jay’s outcome. Within a month, Jay reportedly felt better, saying he didn’t have any symptoms after the initial shock of immunotherapy. “When you start a trial, your body overreacts and your body responds negatively, but I think that’s just a reaction to the treatment. It suddenly tapers down. I was told that I was lucky that I had a response to the treatment. Over the year or two, everything started looking better, and I started feeling better.”
Treatment of Unclassified Kidney Cancer
Jay was 54 years old at the time he was diagnosed. His presenting symptoms were stomach problems, pain, digestive issues, and a persistent cough—because his bowel was obstructed. When he ate, he would regurgitate. He was severely anemic and lost 20 pounds. After Jay had an emergency surgery for an obstructed bowel, it was reported his hemoglobin was at 7—a condition that should indicate the need for a blood transfusion in people who are otherwise medically stable. While recovering in the hospital, and due to how severe a state Jay’s body was in, Jay purported, “The Chaplin came in…the social workers came in, and did advance directives…the clinical trial was a Hail Mary at that point.” Advanced medicine was his best option, or rather, his only.
Fortunately, the clinical trial worked and the primary tumor, the kidney, shrunk from 18 cm to 9 cm. Dr. Linehan removed Jay’s kidney in October 2020, two years after he started his clinical trial.
Jay said he trusted the science, but science can’t predict in an individual patient what is going to happen. “There is an element of art and unpredictability in medicine,” says Dr. Twardowski. “Jay, he’s an amazing patient and he’s been always extremely optimistic and focused, very compliant with everything that we recommended and he’s just an amazing individual. And I think his attitude, you know, it’s hard obviously to quantify it, but I do think it helps that his trust in what we are doing, his belief in science, and participating in a clinical trial, you know benefit themselves, but also hopefully benefit the science. Doing that is quite amazing and inspiring.”
How do you overcome advanced cancer?
In many cases of metastatic disease, patients have something, someone, or a legacy that spurs them to defy or fight cancer which either shadows their inner doubts or provides a sense of peace and acceptance. Jay’s response was unlike those. He was gracefully quite matter of fact-like. He moved with an understanding of what could happen without anguishing over his mortality. External factors such as family, community support, and wanting to live life to the fullest, played no role in inspiring him through treatments according to Jay. “I don’t know where it’s coming from. Some people will say it’s ‘my children’ but, for me, I’m single, I don’t have a family of my own…you know, I don’t know. It was just internal, coming from within.” He had no regrets, and his regard for the science was the external force he placed his trust in and repeatedly staked his life on. “I think I was in good hands. For me, I just showed up, and there was no special kind of strength I had of any kind. I think it was all left in the hands of the doctors.”
Hereditary Kidney Cancer
In 2000, Jay’s father passed from kidney cancer. Interestingly, Jay’s subtype of kidney cancer did not present as a hereditary disease. According to Dr. Twardowski, Jay did not have hereditary kidney cancer. I.e., the cancer his father had was not passed down to Jay. Another facet of Jay’s case which speaks to its uncommon characteritics.
Advice from Jay
- I think this hospital is such a wonderful place. I know it’s odd to say that about a cancer hospital, it’s kind of the scariest place to be, or the last place anyone would want to be but, it is quite a wonderful place to be, it’s a place of healing, of care.
- If anyone found themselves in that position, I would tell you, to please come to Saint John’s. It’ll save your life.
It has been one year since Jay was pronounced in complete remission by Dr. Twardowski, in February 2022.
Jay’s Multi-disciplinary Team of Experts
Przemyslaw W. Twardowski M.D., is the Professor of Medical Oncology and Urologic Oncology, and Director of Clinical Research, Urology and Urologic Oncology at Saint John’s Cancer Institute. Dr. Twardowski started Jay on a clinical trial in September of 2018 and oversaw his entire treatment process.
Jennifer Linehan, M.D., is the Associate Professor of Urology and Urologic Oncology, and Director of Urology Translational Research at Saint John’s Cancer Institute. Dr. Linehan performed a radical nephrectomy on Jay in the middle of the pandemic in October 2020. She also oversaw parts of his treatment.
Trevan Fischer, M.D., is the Assistant Professor of Surgical Oncology, and Assistant Program Director of the Complex General Surgical Oncology Fellowship at Saint John’s Cancer Institute. Dr. Fischer performed an auxiliary lymph node dissection of Jay’s left armpit, in July of 2019 when those lymph nodes wouldn’t resolve medically.
Sources
- Immunotherapy Combination Approved for Advanced Kidney Cancer – NCI
- Opdivo (nivolumab) FDA Approval History – Drugs.com