Fighting the Unseen: A Journey with Intrahepatic Cholangiocarcinoma

Before I tell you about the fierce battle my mother is waging against a rare cancer, I want to introduce you to the woman who raised me, the woman whose resilience and strength have always been the cornerstone of our family.

My mother, Helen, at the age of 76, has the most beautiful light and vitality. Her compassion radiates, enveloping everyone in her vicinity, kindling a sense of warmth and positivity. Helen's resilience in the face of life's tumultuous ups and downs has been nothing short of inspirational, her strength embodied in the grace with which she handles every challenge. More than a mother, she serves as a bedrock of fortitude, a luminous beacon of hope, and a paragon of unyielding spirit.

In December of 2022, an unanticipated challenge stormed into our lives, a rare and stealthy cancer known as Intrahepatic Cholangiocarcinoma. This was a word we'd never heard before, but one that would soon imprint itself indelibly on our lives.

The medical language associated with this condition might be intimidatingly complex, but its essence is brutally simple: it's a relentless, unseen enemy. It originates within the smaller bile duct branches inside the liver and often eludes early detection due to its resemblance to hepatocellular carcinoma, another type of liver cancer.

This diagnosis sent shockwaves through our family. My mother's persistent complaints of fatigue, upset stomach, and mysterious weight loss over the past year were suddenly cast in a starkly different light. Despite a family history riddled with cancer, we easily overlooked the signs, just as the doctors have done for the last two years, after all they know best right? I, too, was guilty of this oversight. I had dismissed her symptoms as signs of depression and urged her to keep active, to exercise, and foster a positive mindset. Her deteriorating condition and escalating weight loss, however, became impossible to ignore.

Looking back, I realize my mother had been crying out for help for over a year, but her pleas fell on deaf ears. It is with a heavy heart and a sense of regret that I share this story, hoping to highlight the importance of listening to our bodies. If something feels amiss, insist on a thorough medical evaluation. Don't let the whispers of your body go unheard.

Moved by a growing concern, I reached out to her primary care physician and insisted

on a series of appointments for her, demanding an upper GI, colonoscopy, mammogram. Astoundingly, all tests came back clear. Her flawless blood work provided no clue about the hidden invader silently expanding within her.

The harsh reality came to light only when a hard lump, about the size of a lemon, surfaced in her abdomen. This alarming discovery by an ultrasound led us into a whirlwind of medical tests, eventually unearthing a 9.6 cm tumor lodged in her liver - a horrifyingly frequent manifestation of Intrahepatic cholangiocarcinoma, often detected only when the disease has advanced significantly. A subsequent CT scan confirmed our worst fears: it was indeed cancer.

Amidst the gloom, we were fortunate to have family in the medical profession. My uncle, a prominent pathologist, Dr.Thomas Wheeler, promptly arranged an appointment with a highly-regarded Hematologic and GI Oncologist, Dr. Benjamin Musher. The discovery of the tumor and the subsequent grim revelation hit us like a tidal wave, forever altering the trajectory of our lives and reshaping our reality in the most heart-wrenching way.

Dr. Musher initiated an advanced protocol that involved Next level Gene Sequencing and Genetic Testing.

Tempus gene sequencing is a cutting-edge service -- tumor tissue and liquid DNA profiling,

diagnostic tool that examines a patient's unique genetic makeup to understand the genetic changes driving their cancer. This data can potentially guide personalized treatment strategies and help predict a patient's response to specific therapies It's used in cancer treatment to identify specific mutations in a patient's tumor cells that could be driving the growth of the cancer. This can help doctors choose targeted treatments to block the function of these mutated genes. However, gene sequencing is complex and doesn't guarantee a certain treatment will work.

Genetic Testing is a medical test that identifies changes in chromosomes, genes, or proteins to predict a person's chance of developing or passing on a genetic disorder. In cancer care, it's used to understand inherited cancer risk or to guide personalized treatment strategies.

It was a glimmer of hope that shone brightly -- until it abruptly fizzled out. The gene sequencing didn't match any known effective chemotherapy treatments, and the genetic test surprisingly showed this cancer wasn't hereditary. The origin of this cancer left us in a perplexed silence. How had this malignancy taken root?

I was catapulted into a fervor of intense research and networking, a desperate soul-searching quest to unearth any shred of evidence that could contradict her doctor's verdict. The internet was a minefield of false hopes and miracle cures, but in our position, we were compelled to leave no stone unturned. The task of sifting through, documenting, and researching potential lifelines became my unwavering obsession. The question that haunted my waking hours and invaded my dreams was this: could I possibly save my mother's life?

In the face of overwhelming despair, we uncovered a reservoir of resilience and resolve to carry on our fight. We charted untraditional paths, bolstering her immune system in preparation for immunotherapy and chemotherapy. We introduced a regimen of high-powered supplements, acupuncture, and a nutrition-focused diet. Yet, amidst all these, we discovered the most potent remedy to be the unending love and support from her family. Our shared resolve to forge ahead, no matter what, proved to be our most powerful tool in this battle.

First-line chemotherapy Durvalumab, Gemcitabine and Cisplatin was our initial weapon, our collective hope to arrest the cancer's progress. We faced every infusion with hopeful hearts, clinging to the belief that this would be the key to reclaim her health. But life had another twist in store for us. The first line of treatment didn't yield the desired results.

This setback, while disheartening, did not dampen our fighting spirit, particularly my mother's. Undeterred, she stands ready for the second line of treatment, Futibatinib. Despite the odds and the prognosis, she refuses to surrender. Her will to live is unwavering, inspiring us all to keep fighting alongside her.

As we navigate through this unprecedented journey, I want to share our story in the hope that it might serve as a call to action. Intrahepatic cholangiocarcinoma is a silent killer, often growing undetected until it's too late. Listen to your body; if something feels amiss, insist on thorough medical evaluation. It may just save your life. My mother continues to fight, her spirit remaining unbroken, her determination unwavering, despite the seemingly insurmountable challenges. As we battle hand-in-hand, we hold on to hope, cherishing each moment we have together.<3

Regina