Your Name: Amy Jacobs, Patient
Where do you live? New York
How old are you? 59 (Diagnosed at age 56)
How were you diagnosed? Diagnosed on 6/13/2018, Stage 4 adenocarcinoma after dialing “911” late evening on 6/12/2018, via emergency surgery which resulted in a partial gastrectomy (PG) by Bill Roth II procedure. A 9.5 cm tumor located in the antrum had perforated the stomach wall. I was discharged from the hospital 16 days later on 6/29/2018 at 95 lbs, and told to do my best to gain as much weight as possible prior to commencing chemotherapy on 8/13/2018. I was 118 lbs on 8/13/2018.
What was your treatment?
8/9/2018: Infusion Center Orientation
8/10/2018: Surgery to implant SmartPort mediport in left-chest
8/13/2018: Pathology report indicates tumor is HER2+ (positive) qualifying me for treatment with Trastuzumab (a/k/a Herceptin). An echocardiogram had to first be done to test for heart strength and condition as Herceptin may cause heart damage.
First line chemotherapy began 8/13/2018: FOLFOX for 8 rounds, which was changed to FOLFIRI and Herceptin for final 4 rounds due to toxicity from Oxaliplatin. 9/13/2018 Echocardiogram was done clearing me for Herceptin, which was added to FOLFOX and FOLFIRI thereafter. These were given biweekly: starting on Monday for approximately 6 hours including pre-meds for anti-nausea etc., sent home with a “pump” to administer Fluorouracil over 48 hours, return on Wednesday to be “unhooked” and have Neulasta Onboard placed on my arm.
FOLFOX = Folinic Acid a/k/a Leucovorin FOLFIRI = Folinic Acid a/k/a Leucovorin
The major side effects from this line of chemotherapy were immense fatigue, no appetite, extreme sensitivity to cold, cachexia, and “dry eye” (where the eyes water constantly because the tear ducts function improperly).
I was given a “short break” in early January 2019 to have a CT scan done, which was confirmed subsequently by a PET Scan both indicating metastasis to the liver.
Second line chemotherapy began 2/1/2019: Paclitaxel and Ramucirumab (a/k/a Taxol and Cyramza). The major side effects from this line of chemotherapy were immense fatigue, no appetite, and hair loss (95%). The side effects from FOLFOX and FOLFIRI remained through most of this Second line chemotherapy treatment.
2/18/2019: I joined Planet Fitness to attempt to gain back muscle lost to chemotherapy treatment. Cancer had robbed me but good, and I intended to reclaim it all. I worked my tail off 5 days per week under the guidance of a trainer, and built back 15 pounds of pure muscle. Unfortunately not long thereafter the COVID-19 pandemic ensued and the gym closed, but I tried to remain active as best I could.
3/19/2019 my pathology report was returned indicating biomarkers PDL-1 (CPS: 80%) and MSI-H (high), either of which qualified me for immunotherapy via Pembrolizumab (a/k/a Keytruda). The PDL-1 biomarker had a prerequisite for advanced gastric cancer patients of 2 unsuccessful prior lines of chemotherapy; however, the MSI-High biomarker was a class of its own and an immediate qualifier with no prerequisites.
3/25/2019 Third line immunotherapy with Keytruda began via the MSI-H biomarker. Infusions are 30 minutes every 3 weeks. The labwork and doctor visit on each infusion day are longer than the infusion itself. CT Scans are done at 3 month intervals. Each of mine showed a decrease in the liver metastasis. The 11/25/2019 CT Scan indicates NED (No Evidence of Disease), as do subsequent CT Scans. As of this writing I remain NED. I have a skin blemish rash from Keytruda (which is blemish only with no itching, on my abdomen, upper chest and lower spine), which was pathologically tested and returned a diagnosis of granuloma consistent with sarcoidosis. The sarcoidosis can also invade the heart and lungs, it has appeared scantily in my right lung.
Interestingly, since using the MSI-H biomarker for treating with Keytruda I am eligible to resume use of Taxol and Cyramza in the event of future recurrence/metastasis.
I have osteoporosis from my bones being washed out and weakened by first line chemotherapy.
At this point I am very active, in good health, and at solid weight (145 lbs).
What is your hope? Or what do you want to share with others?
It is my hope that gastric cancer patients may take control of their bodies and treatment, and practice strong mental attitudes. Ours’ is a horrible diagnosis, however, giving into it will only add to ill effects.
I was diagnosed at Stage 4 and given a very grim glimmer of hope, including that Stage 4 is treatable but not curable. I was 95 lbs post-surgery, and 6 weeks later 118 lbs at the start of chemotherapy treatment. I became immensely fatigued, had little appetite, excruciating sensitivity to “cold” from Oxaliplatin, and suffered from cachexia (extreme muscle waste). So being the hardass I am, I slapped on a militant attitude and began my quest to kick cancer’s ass one day at a time. Realistic goals were set: October 6, 2018 my son and his then-fiance were to be married; I made it to that goal very weak and fatigued from chemotherapy but not many would notice that. Chemotherapy totally sucked, I won’t lie: when I found out on Christmas Day (12/25/2018) that my daughter-in-law was pregnant I just burst into tears, so very happy for them and at the same time thinking “holy shit, I had better still be here for the birth of my first grandchild!!!” The Infusion Center Nurses, Pharmacists and Oncology Social Workers really made this ordeal so much easier to go through, I even had chemo scheduled on my birthday – what a present! The torment of “life on chemo” continued, until I found out in mid-January that my cancer had the nerve to spread to my liver. Chemo was changed to the second line, which had its new challenges along with the cumulative effects of the first line combo. But: I was still here, while most all of my hair was not. Mid March 2019 I changed to third line immunotherapy, which had its own horrible risks but physically was much easier to tolerate than chemotherapy.
Here came the real hope: ALL of the following CT Scans were showing decrease in the liver metastasis, coupled with being here for the birth of my first grandchild (a granddaughter) on July 31st. I was still here. Immunotherapy infusions continued every 3 weeks, and as of 11/25/2019 my CT Scans indicate NED (No Evidence of Disease) which is my ultimate goal. There is always the feeling of “waiting for the other shoe to drop”, but being NED is reassuring and hard work staying that way. I am still here despite that initial grim glimmer of hope, have had wonderful goals met, so much joy and happiness in my life, the challenges of COVID-19, and I am thankful and grateful for my medical dream-teams (yes I have two dream-teams, as I recently moved 60 miles away to Long Island, NY). My son and daughter-in-law, granddog and granddaughter, and my Mom have been my best medicine. Oh,and I am going to be a grandmother (Nanni) again next Summer (2021), and I fully intend to be here still then! My next long-term goal is to see my 1st granddaughter graduate college, that should buy me a good 20 years.
Be strong-minded and strong-willed for yourself. Be aware that family and friends around you will be trying to find ways to make life easier for you, find other treatment options, food options, etc., which may or may not be beneficial. This is not to say they are not greatly appreciated, just that it is so unfathomable what we go through fighting cancer and it is very painful for them to watch. Everyone is walking on eggshells, but you don’t have to if you remain strong even if silently. Please only research on reputable medical and organization websites, do NOT trust or read anything on “Google”. Be leary of “Joe Shmoe’s or Jane Doe’s Protocols”, if they worked or were legitimate they would be patented and approved for use: Bottom line is we have cancer, why would you put anything questionable into your bodies?
Ask many, many questions of your oncology team, including Infusion Center Nurses, Oncological Pharmacists, and Oncology Social Workers. Secure specialists to treat you for any diagnosis which is not “cancer” or “hematology” related, as your oncology team treats you for only that: cancer and hematological issues. Your oncologist should be the chief of your medical team, let him or her have input as to what the other physicians wish to prescribe or treat you with. Tell your oncology team immediately of any side effect, no matter how small or petty you think it is; they need to know everything you are going through as one little issue can fester quickly into something very serious.
There is financial assistance available for medications, ways to obtain insurance coverage, options for disbanding your life insurance policies to obtain cash now, and many other things. If you cannot research them yourself, reach out to others and/or gastric cancer organizations. Get “your house” (affairs) in order: make a Last Will and Testament, make a Health Care Proxy/Living Will; etc. Tie up any loose strings you have “hanging”. Find out as much as you can about hospice and palliative care options, better to be armed with information and knowledge in the event these become necessary for you.
Eating is one of the only things we have total control over, so don’t be adverse and go on a hunger strike or give people a hard time when they offer or ask if you’ve eaten. It is so important to maintain a good weight during treatment. A soft diet is best, easpecially for those who underwent gastrectomies. Drink, drink, drink water: becoming dehydrated will only earn you a trip to either the ER or Infusion Center for IV Hydration.
Lastly, do not, under any circumstance, give up hope or give up on yourself. If you choose not to pursue treatment that is okay too, just make sure to have a set of plans to include happiness and uplifting things so your final days will be so well-spent, do this for yourself and your loved ones.