Determined to Win

Linda Chambless

• Misdiagnosed as bladder or kidney infection
• A second opinion led to a clinical trial
• Extensive side effects
• 100 percent tumor reduction

My official diagnosis is a mouthful: “Metastatic adenocarcinoma of the pancreas with liver and bone involvement along with the peritoneal carcinomatosis.”

At the end of the day, it’s pancreatic cancer. But let’s start at the beginning . . .

A Painful Start

In July 2023, I experienced sudden and severe pain in my left abdomen. In hindsight, I had been gradually losing weight, but it didn’t occur to me that something bigger was at play.

The pain was initially misdiagnosed as an upper bladder or kidney infection. My primary doctor advised me to drink a lot of water and retest my blood and kidney numbers in “a few weeks.” After a few rounds of drinking water and retesting my kidneys and bladder, I had an MRI of my pelvis, which detected a tumor attached to my ureter. I went through the full barrage of tests: blood work, pelvic MRI, PET scan, etc. That’s when the real story began—when I was officially diagnosed with pancreatic cancer on October 2, 2023.

I was 73 years old at the time and living in Ponte Vedra, Florida.

First Step Includes a Clinical Trial

My initial oncologist prescribed the “standard of treatment.” I immediately sought a second opinion from the GI oncology department at the Mayo Clinic in Jacksonville. Dr. Hani Babiker and Dr. Umair Majeed suggested I join a clinical trial that Dr. Babiker was leading. The trial uses a new technique called Tumor Treating Fields (TTF). Developed by a company called Novocure, TTF is a portable device that delivers low-intensity electrical fields to treat cancer. The trial includes chemotherapy with paclitaxel, cisplatin, and gemcitabine along with the TTF device. I was immediately enrolled and received treatment from November 2023 through December 2024.

Genomic testing of my tumor revealed that I had a KRAS G12D mutation with an EGFR alteration, which Dr. Babiker felt substantiated his plan.

So Many Side Effects . . .

I experienced a lot of side effects from my treatment. The chemo caused hair loss, fatigue, difficulty sleeping, chills, swelling of my face and lower extremities that lasted several days after each infusion, peripheral neuropathy, and random jolts of pain, primarily in my legs and feet. I developed hypertension, which increased during the last few months of treatment. My sense of taste also diminished. (Pro tip: Ginger and lemon are the best for that!)

As far as my GI tract was concerned, I initially had frequent constipation and diarrhea, but I learned how to normalize it. On the plus side, I had no nausea, but there were periods when I did not want to eat.

I developed an allergic reaction to cisplatin during my last infusion, just before entering the maintenance phase, so I can’t have any more of that drug. The adhesives on the TTF device arrays (adhesive patches that I put on my skin to send the electrical fields to my tumor) caused skin issues (my skin was already sensitive to adhesives). To solve that problem, we relocated the arrays nightly to another spot and treated the affected area with ointments.

My hair started to grow again during the maintenance phase (end of May 2024), including all over my face and neck(!). That lasted a few months and then stopped. During maintenance, I developed acute kidney injury with membranoproliferative glomerulonephritis (MPGN), determined to be a result of gemcitabine, so that drug also had to be stopped and I no longer was qualified to continue on the trial.

Once the clinical trial was stopped for me, I began biweekly maintenance of 5-FU (fluorouracil) via pump infusion. I have taken a few immune system boosters (with Claritin to offset the bone pain side effect), had a hemoglobin infusion for anemia once, and have had acupuncture to treat the neuropathy. I only saw a minor improvement with all that treatment.

ABSOLUTELY!

Given all of the side effects, people often wonder if the treatment has positively impacted my experience and/or led to a better quality of life. The answer is: ABSOLUTELY!  By April 2024, we saw an 80 percent reduction in my tumor. In June, it was still shrinking. By October, we saw 100 percent reduction. The positive results obviously boosted optimism and hope even more.

The Ins and Outs of the TTF Trial

I can share some best practices for those who are using the TTF device. The best first step is to learn how to apply and remove the transducer arrays on your torso. I needed help from my husband and daughter with the process. 

While 18 hours per day was recommended, the best we could achieve without causing major skin issues was 12 to 13 hours per day. With each application, my husband had to reposition the array placement to avoid skin welts. Because I am a petite person, there was little space on my torso to maneuver, so that was challenging.

It can be tricky to decide which is best: being connected to an external power supply or carrying around the heavy battery pack during periods of use. Because of the weight of the battery pack, I preferred wearing the arrays overnight, minimizing the hours of moving around with the battery pack.

Goo Gone to the Rescue!

Eventually I learned to sleep with the TTF device and to deal with unplugging and reconnecting it after my frequent trips to the bathroom. The first few months were certainly a challenging adjustment in many ways, not the least of which was experimenting with “masking” some of the adhesive to lessen skin irritation and with various methods to “unstick” the adhesive—soaking with baby oil, soaking in the shower or tub, coating the area with baby shampoo and conditioner, until—finally—I discovered Goo Gone Bandage and Adhesive Remover! With that product, the process of soaking and removing arrays slowly was still tedious and time- consuming, but not painful or destructive to my skin.

In general, the prep process (masking the arrays and applying them) and the removal process (Goo Gone, peel, and shower off) took about one hour each. We recorded my daily use with a device compliance diary, which was turned in to the research team and validated by periodic download of usage history by a research technician.

From Devastation to Hope

When my diagnosis was confirmed, we were profoundly devastated. Despite the well-published statistics regarding cancer, and despite a good health history, healthy habits, and resilient family genes, our reaction was of course: “Why me? Where did this come from?” I use “we” when recalling the story because my journey truly has been a team effort, with my husband and family as my personal pillars (24/7) and the oncology and broader Mayo team as my experts who also feel like extended family. I wouldn’t be writing this today without all of them.

While always aware of the ultimate prognosis and unknown timeline, we immediately kicked into high gear to fight this. “Timing is everything”—my normal mode is to give any trivial issue a little time to resolve itself (at a certain age, so many things come and go). Shortly after the initial “attack” of intense pain and for weeks after that, in hindsight I wished I had simply gone to the ER right away. Perhaps the cancer would have been diagnosed sooner. However, had I done that, I might have gone immediately and directly into the standard treatment of care. But instead, during my initial consultation for a second opinion, I learned of the possibility of being enrolled immediately in the clinical trial, and we were of course ready to try anything to “win!”

The TTF trial was particularly appealing because every enrollee receives exactly the same treatment, so there was no risk of being assigned a placebo drug. At the very least, my trial experience would contribute to science. We also were early pioneers in the TTF array process, recording and sharing our lessons learned with new enrollees.

Advice

Especially at first, it was difficult to talk about my situation. But I recommend to others that they do it when/if they can. One of the most difficult conversations was with my grandchildren, whose dad had only recently gone into remission with leukemia. Almost everyone is genuinely interested in learning about my journey, and many are very interested in understanding the details. Many people know someone with a similar health challenge and are eager to share information that could be beneficial to others.

We continue to do as much as we can on our own, because it’s best to stay active. But we also asked for and accepted help. We try to live our normal lives, but we know our limits—especially regarding exposure to infection. My favorite times are walks on the beach and “honey” time with my husband when we are holding hands, crying, reminiscing, and, yes, planning future activities.

It is critical to pay attention to yourself. You know better than anyone when something doesn’t feel right. You (or your team) must stay on top of everything—scheduling, recording medical history, researching, journaling treatments, medications, side effects, emotions, etc.

While we are not living our pre-diagnosis lifestyle (mostly because we avoid events with large crowds and limit our social interactions, such as group exercise activities or travel), we have been surprised by how much we did during the last few years. Working within the constraints of the biweekly infusion and the subsequent predictable days of symptoms and the frequent appointments at Mayo, we learned to rest and recover, then do as much as we could during the remaining two-week period. Not just routine stuff, but family dinners, our grandchildren’s performances, road trips to see family and friends, an overseas trip, always carting with us the ever-cumbersome TTF device equipment and dealing with schedule constraints. We couldn’t possibly count the number of times we’ve heard, “Grandma—it’s time for you to go home and put on the arrays!”

My current status feels miraculous. It takes effort to control the despair and worry, which underlie everything, as we are always “aware” and “anxious” that the situation could suddenly change. We refrain from dwelling on it. We are grateful and blessed with the support, prayers, and attention of extended family, friends, and medical professionals. We applaud the pancreatic cancer researchers. We remain positive and try to find joy in everything and every day.

Appreciate every precious day. Stay positive and be brave. Be determined to WIN.