From Diagnosis to Determination: My Ongoing Cancer Journey
October 30, 2024
This is a guest post by Jeffrey Ellin, 45, who has a rare genetic BAP1 mutation that puts him at…
Read MoreThis is a guest post by Jeffrey Ellin, 45, who has a rare genetic BAP1 mutation that puts him at high risk for developing multiple cancers, including kidney cancer, which he was diagnosed with in 2023. Jeff is based in Baltimore, Maryland.
Discovering I Was at Risk
My cancer journey began five years ago when a seemingly typical mole was removed from my neck – it turned out to be a BAPoma. BAPomas are benign tumors commonly found in patients with BAP1 predisposition syndrome. This syndrome is a genetic condition that significantly increases your risk for several different cancers including melanoma, kidney cancer, mesothelioma, and uveal melanoma (eye cancer). This was a rare and relatively new finding in the medical world. Soon after my diagnosis, I began regular routine skin and eye exams to catch any possible melanoma or eye cancer early, but there were no protocols to get monitored and catch kidney cancer or mesothelioma the same way.
Being Diagnosed
My first cancer diagnosis was in October 2020 when early stage melanoma was discovered during one of my quarterly skin exams. Then in February 2023, stage 4 kidney cancer was discovered. What started as discomfort in my testicle, which I initially feared might be testicular cancer, turned out to be caused by pressure in my renal vein from a tumor in my kidney.
This discovery was devastating to hear. Until I had a plan and more information, I felt lost and out of control. I immediately received tremendous support from my wife Stacy, my brother Jason, and “friends who had connections or personal experience”, who gave me advice and helped me quickly schedule appointments with many of the top cancer institutions in the United States.
Within a month, I underwent a radical nephrectomy that removed a kidney and the adrenal gland above it at Memorial Sloan Kettering Cancer Center in New York, as early scans showed cancer had spread to my adrenal gland. My pathology report also found cancer in multiple lymph nodes. In April 2023, I began a year-long treatment of pembrolizumab and belzutifan as part of a double-blind clinical trial at Johns Hopkins in Baltimore, Maryland. The treatment left me with severe anemia and extreme fatigue for a year, but allowed me to live a normal life. My kidney cancer treatment ended May 1, 2024.
The Unexpected Turns
Well into my kidney cancer treatment, four more early-stage melanoma lesions were found and removed from my arm and back. Just recently, in a series of clinical studies at the National Institutes of Health (NIH) in Bethesda, Maryland, sub-clinical mesothelioma was discovered in both of my pleurae (lung cavities) as well as in my peritoneum (abdomen) during exploratory VATS and laparoscopy procedures.
For treatment of the mesothelioma, I was set to begin a phase 2 trial that targets the genetic underpinnings of my BAPI mutation, which could help me fight or prevent my other BAP1 related cancers as well. However, days before I was set to begin the trial, a benign (active adenoma) tumor was found on my pituitary gland, which made me ineligible to participate in the trial. This newly discovered tumor is causing Cushing’s disease, which needs to be addressed before I can begin the Phase II clinical trial. I’m now scheduled to have brain surgery in early November, with hopes I can begin the trial after I’ve fully recovered.
The Power of Support and Giving Back
Throughout these unexpected turns, what has surprised me the most is the resilience I have found within myself and the overwhelming support I have received from my family, friends and co-workers. Yes, I’ve had a few breakdowns, but the love and encouragement I received quickly provided me with the strength I needed to keep going and stay mentally strong.
What has also brought me great comfort is the ability to give back to others facing similar challenges. Over time, I’ve found myself providing support to others who are just starting their own cancer journey: advice and connecting them with doctors, sharing my experiences, and simply being there to listen. Talking about my situation with others not only helps them but it also brings a sense of normalcy and provides a therapeutic release for me. It reminds me that I am not alone in this fight and that together, we can find strength in each other.
“Giving back” is also the reason I sought voluntary participation in multiple NIH studies, one of which was designed to put together a pre-screening plan for people diagnosed with BAP1, so early screening for all BAP1 related cancers can become standard care. Another involved two medical procedures to look for subclinical mesothelioma. Without having participated in this study, I would not know I have this additional cancer – and I want to change that for others, if I can.
Running Through the Pain
Some of my proudest accomplishments throughout this journey have been completing the Marine Corps Marathon in October of 2023 and 2024. I’ve run this event every year since 2014 to honor a fallen friend of mine, and I didn’t want to miss them, no matter how difficult it would be physically. My times have been awful, but finishing the 26.2 miles is still a major victory. It was a reminder that no matter what challenges life brings, we have the power to push through and achieve our goals. In 2023 my brother ran (and walked!) beside me the entire way, providing me with mental strength when I needed it most. It was needed, as my severe anemia from treatment made it physically demanding. The training this past year had its own physical challenges, especially with three surgeries this past summer, but I was determined to cross the finish line again. Running provides me with a sense of control in a situation where so much can feel out of my hands. It’s a way for me to prove to myself that I still control my mind and body.
Looking Ahead
As I continue to participate in clinical studies and undergo treatment, I remain super positive. The research being done for cancer is groundbreaking, and I am honored to be a part of it. I am grateful for a chance to be involved in research so that others facing similar diagnoses in the future can have even greater outcomes. We may not have control over everything, but we do have control over how we respond to the challenges life throws our way. This journey has been anything but easy, but with the love and support of my family, friends, and my incredible medical teams, I am confident that I am prepared to win this battle.
2 thoughts on “From Diagnosis to Determination: My Ongoing Cancer Journey”
I have the pleasure of knowing Jeff Ellin And I am a cutely aware that one of his most effective strategies in combating. These debilitating illnesses is positive outlook on life and general mental attitude. If you spend five minutes speaking to him, you will leave that conversation feeling that any obstacles that you have in your life Can be overcome. His infectious optimism is palpable and should be a lesson to all of us who have dealt with illness, adversity or loss. Thank you, Jeff for sharing your journey. Respectfully, Damon
Jeff, you are such an amazing inspiration. Your positivity and advocacy are remarkable. I (and everyone else who has the fortune of being your friend) am blown away by your strength and resilience through such an unimaginably tough journey.
I’ve struggled with things in my life, which felt unbearable and unfair. I allow(ed) these things to suck the light out of me. You taught me to see things in a different light. Our conversation a couple of months ago really hit home. So, I just want to say thank you. My ‘shit’ is a speed bump in this journey of life. You ran a freakin marathon!! Holy bologna dude!! Aaron is up there bouncing off the walls, cheering you on, just like I am and so many others, who are lucky to know and love you
You GOT this Jeff Ellin