Amy Jacobs – Long Island, New York
I dialed “9-1-1” late evening on June 12, 2018, for excruciating abdominal pain, for which I underwent emergency surgery resulting in a partial gastrectomy (Bill Roth II procedure) removing the lower two-thirds of my stomach. A 9.5 centimeter-sized tumor had perforated the pyloric antrum, explaining the excruciating pain I experienced. I have an extremely high pain tolerance. At the time, I was 56-years-old, a single mother, and worked full-time for decades as a paralegal. On August 10, 2018, A PET scan confirmed the surgical diagnosis that the cancer was stage four, and the initial pathology indicated adenocarcinoma/poorly differentiated (T4, N2, Mx). I tested “negative” for the H. Pylori bacteria, and I underwent genetic testing, which also returned “negative.” The tumor tested positive for biomarker HER2+ (positive). Weighing 95 pounds, I was discharged from the hospital on June 29, 2018, and instructed to recover and gain as much weight as possible before starting chemo. My prognosis was poor, to be charitable. I overheard some hospital staff pinning a “six-month” ticket on my head. On August 9, 2018, my mediport was surgically implanted; and I began my 1st-line chemo the following Monday, August 13, 2018, weighing 118 pounds (I managed to gain 23 pounds). The side effects of the first-line chemo were both debilitating and cumulative, compounding with every infusion. After the 12 cycles of chemo on January 10, 2019, I took a short break to have a CT scan on January 17, which unfortunately indicated liver metastasis (confirmed by PET Scan on January 29. All of that horrific first-line chemo was unsuccessful. On February 4, I began second-line chemo, which continued weekly until March 25. I still experienced debilitating fatigue, “cold” neuropathy, cachexia (muscle-waste), and PTSD from the first-line chemo, along with the additional side effects of the second-line chemo, which included new-additional fatigue and hair loss. I was given premeds with both lines of chemo; both lines included steroids, which caused the side effect of “insomnia.” I challenge you to imagine having extreme, overwhelming fatigue and insomnia at the same time. I found satirical humor in that.
My secondary pathology report arrived in mid-March 2019 indicating tumor biomarkers: PDL-1 (CPS score of 80%) and also MSI-H (high), either of which qualified me for immunotherapy treatment with Pembrolizumab (a/k/a Keytruda, which you may have seen advertised on television and magazines). Immunotherapy drugs have different prerequisites for each cancer type. For Gastric Cancer, the precondition for Keytruda is two prior unsuccessful lines of chemo and a PDL-1 score of one percent or higher. However, regardless of cancer type, MSI-H tumors qualified on their own with no prerequisites, which is what my oncology team used to enroll me for treatment. I began Keytruda on March 25 with infusions after that every three weeks. All subsequent CT scans evidenced a decrease of the liver metastasis until the CT Scan on November 25, 2019, which indicated “No Evidence of Disease” (a/k/a “NED”). I am still treating with Keytruda and had my 32nd infusion on January 6, 2021, and remain “NED.” Stage 4 cancer is treatable but not curable as recurrence is always possible. Keytruda is a “miracle drug” for many patients, and it has been for me. I work very hard to maintain my NED status. I fight this disease harder each day, mostly in honor of those who suffer with and have died from this cancer. There are countless daily heartbreaking stories, and this cancer has no age boundaries as there are more and more young people being diagnosed with it. I have permanent residual effects from the two lines of chemotherapy: cachexia (which I now have under control), osteoporosis, constant Level 9 pain in my left hip due to Neulasta Onpro, neuropathy for cold-sensitivity caused by Oxaliplatin; and PTSD, which is mostly under control except for awakening at 2:00 AM every day.
While chemotherapy purports to “kill” cancer cells, it also kills healthy cells, leaving patients with many adverse side effects that are cumulative with each successive treatment (many of these become permanent). Immunotherapy, however, purports to “retrain” the immune system to attack and kill the cancer cells that are “hiding” behind the particular biomarker. There are many possible severe risks associated with immunotherapy. However, it was a risk I chose to take after considerable research, and I would make the same decision if I had it to do over again. I am very fortunate my crappy cancer has correct biomarkers.
Unfortunately, Gastric Cancer is highly under-recognized and does not share the same glorious funding as cancers such as breast, lung, and pancreatic cancers. Being so grossly underfunded, the research allotted to it is minimal (noting that Japan, China, and South Korea have enormous funding and research for gastrointestinal cancers). According to the American Cancer Society, for the year 2020, there were approximately 27,600 new cases of gastric cancer, with about 11,000 deaths. The FDA-approved “standard” treatment protocols have been the same for many years and do not work for every patient like me. Immunotherapy as a third-line option was successful, but I had to endure the debilitating prior eight months of chemotherapy all to no avail. Active research aimed at early detection of gastric cancer and detecting which patients will have success from various treatments; an increased funding amount would significantly broaden ongoing and future research. My Stage 4 cancer caused me to cease my employment and go on Federal Disability (SSD). I did not drive again until the Summer of 2019 due to the ill effects of chemo. Since June of 2018, I advocate strongly for myself and other cancer patients suffering either gastric or other cancers.
In 2020, I was nominated to participate as a “consumer advocate” in the Congressionally Directed Medical Research Programs hosted by the Department of Defense’s Peer-Reviewed Cancer Research Program. Consumer advocates are comprised of patients who prepare written and verbal comments about the impact of the proposed research on diagnosis, treatment, and quality of life. It was such a high honor for me to participate among the professional, scientific/medical reviewers, to deliver a cancer patient’s input to the various, numerous proposed cancer research applications.
Additionally, I assist cancer patients in resolving insurance coverage issues, filing for State and Federal disability, financial stress, unpaid debt, and marital stress, and locating resources such as counseling, home health care, and Hospice.
My “warrior tip” to you is: “keep your mind sharp and strong at all times.”
I believe this is 95% of the battle. Always strive to be bigger than the disease even when you are beaten down by chemo, on the couch from debilitating fatigue. Somehow find it in you to do what you must: Keeping a strong mind also includes properly nourishing and hydrating yourself, even when you feel you cannot. Mental health is not readily addressed by the medical teams. During the first 9 months of chemo my eyes would shoot-open at 1:30AM every day; I’d be gasping in air thinking “Oh thank heavens, I’m still here!!!”, chemo (post-surgery) was so harsh I swore it would kill me before the cancer ever could (that is how horrid it makes you feel). I later learned that post-surgery chemo is more debilitating due to malabsorption issues. These things stay with you but you will overcome them in time. You need to understand the chemo drugs, when they “peak” and when they “fall”, knowing during the “peak” (a/k/a Nadir) you will be feeling the worst – you can most definitely plan for it! I kept a dry-erase calendar and circled these days in “green”. You need to understand that dehydration will not only earn you a trip to the ER or Infusion Center for IV Fluids, but an array of painful, and often serious, other issues. Set realistic short- and long-term goals for yourself. Get journals, puzzle books, and adult coloring books to take your mind off of your poor quality of life. There will be a day when the strings on your boxing gloves are loose, just don’ ever take the gloves off. And every morning when you rise, remember you have two (2) middle fingers – use them!! I am so thankful and grateful for: My outstanding surgeon and original oncology team (Montefiore Nyack) for saving my life, I’m certain I wouldn’t be
writing this without having had the surgery and oncological care I received from them; my Mom, son and daughter-in-law, family and friends for always supporting me, and visiting during the many months I was treating with chemo even when I was scary for them to look at or be around; Merck for perfecting Keytruda enough for MSI-H patients to attain NED status; my older granddaughter, Charlotte Rose, for inspiring me to really suck it up, find a way off the fatigue couch and start driving again shortly after her birth in July 2019; both my granddaughters, Charlotte Rose and Olivia Jean, for helping me forget about my disease and permanent ailments for at least 3⁄4 of every day; my outstanding new medical team (NYU Langone) here on Long Island for keeping me NED; and Debbie’s Dream Foundation for being a wealth of information and resources to me; accepting me as a PREP Mentor, Patient Advocate, and my newest endeavor of Chapter Leader for Long Island, New York; It is very rewarding to assist other patients and/or caregivers navigate this deadly disease, ensure they have proper credible information, and be a voice as a Patient Advocate for the Stomach Cancer Community and a Patient-Consumer Reviewer for the Peer Reviewed Cancer Research Program which receives research funding for Stomach Cancer via our Advocacy Day efforts.
Post-gastrectomy and during chemo, I followed (and still do) a soft diet high in protein. The only milk product used was/is
half and half in my coffee. To achieve my needed weight gain prior to starting chemo, I made meals 3-5 equaling a total
1500 calories daily. You should allow at least 20 minutes for eating meals and chew very, very well before swallowing. I was
advised by my medical team that the softer the food is being swallowed, the less chance for bowel obstruction. I’ve
never had any such issues in the 4+ years post-gastrectomy.
In between meals, drink, drink, drink your watery beverages (we’re told to drink at least half our weight in ounces daily!)
Poland Spring, Crystal Geyser, and other companies make small 8 oz bottles, buy a 12-pack and save the bottles to
reuse. Seeing that small amount of water makes it very easy to pop down at least 8 of them daily! Add extra “meals” in
between that to include salads or soft-steamed vegetables. You can also use tuna or salmon salad for extra meals.