Meet LuAnn, a Colorectal Cancer (CRC) survivor, advocate, and
a spokesperson for our #KnowYourBiomarker campaign.
Written by LuAnn D. October 2020.
Published with permission.
Fortunately, or maybe I should say, unfortunately, I never had any symptoms of colon cancer. Perhaps if I had, I would have gotten a colonoscopy at an earlier age or at least the then recommended age of 50.
At 53, it was finally “convenient” for me to get one. I scheduled the appointment with a local GI doctor and just bit the bullet and did it, expecting it to be completely normal.
However, after awakening from the sedation and barely coherent, my local GI doctor told me there was a 7 cm mass in my cecum. I didn’t even know what the cecum was. He also said it did not appear to be cancer; however, it needed to come out. My thoughts at that time were, well, I’m not having it done locally, and how can I get this done without much disruption to my work schedule.
I figured perhaps I could get it done over winter break. As a special education teacher, that 10-day break over the winter holidays was always a time to catch up with friends or do personal things, but also an opportunity to get necessary medical stuff done without taking time away from your class.
As I scheduled an appointment with a colon surgeon at an NCI accredited, academic hospital, The University of Pennsylvania in Philadelphia, I thought to myself, what else will this surgeon need to be able to schedule the surgery as soon as possible? Perhaps, he would need a CT scan of the abdomen. I called my local GI doctor and requested that he order one. This way, I would have everything the doctor at Penn needed, and we could hopefully have this cecal mass removed, and I would be on my way without any interruption in my work schedule.
The day before my “big appointment with the colon surgeon,” I went to pick up the disc and the report from that CT of the abdomen on my lunch break.
With a tuna salad sandwich on my passenger seat, I went into the radiology center, which was only 2 miles from work, went in, and picked up a sealed envelope with a disc inside of it.
As I drove away, but now stopped at a red light, I opened the envelope, fast-forwarded to the impression section of the written report to read “hepatic metastatic tumors in both lobes” of my liver. Apparently, that mass in the cecum was cancerous and had spread to my liver.
Things went black. I knew what it meant. My brother, mother, and sister all had cancer, two of which had passed because of it, and my only remaining family member survived but was disabled from treatments. I knew what it meant.
I pulled over to a local dog park and sat there. Thinking to myself, what do I do, what do I do, I called my closest person, who was in a meeting not be reached. I called my disabled sister, who was also unavailable, and then I called my best friend, who too was unavailable. I thought to myself, LuAnn, you need to go back to school, tell the principal you have a dire emergency and need to leave school immediately, hoping he could get coverage for me for the rest of the school day. I did just that. Then, I went home, still in a black fog, and dug into researching my disease. The initial results and data were not good.
This time frame from colonoscopy to the realization of what I was dealing with was late November 2017 to the middle of December 2017.
I was so enthralled with research that I did not begin treatment until the end of January 2018. I don’t necessarily recommend this for everyone, but, I knew once I started chemo, my brain was going to be shot, so I needed to arm myself with knowledge about my disease while I had my wits about me.
For all of 2018, it was chemo, hair loss, vomiting, diarrhea, extreme weakness, extreme fatigue, and surreal. In May 2018, I was one of the fortunate stage 4 colon cancer patients who could be resected. This was huge and considered the gold standard for the shot at a cure for the disease.
All in one day, surgeons were able to remove my appendix, cecum, right ascending colon, half of the transverse colon (so about half of my large intestine in all), about a third of my liver, and my gallbladder.
Unfortunately, a day after discharge, I knew something wasn’t right. I asked my spouse to take me to the emergency room. It seemed the sight of where the sutures where my transverse colon was attached to my descending color developed a leak, and I became septic—what a long day. After spending nearly 10 hours in my local ER, they shot me up with something that pretty much made me hallucinate as I was taken via ambulance back to The University of Pennsylvania, where a room on the GI floor was waiting for me. NG tubes, lots of bloodwork, and lots of scans followed by a near month-long hospital stay where I was not allowed to have anything to ingest, not even ice chips. Yes, when I tried to speak, my lips would not move from dehydration, and I pretty much lost my mind.
It wasn’t until week three when they decided to finally put me on TPN, which is a way of feeding the body what it needs but through your cardiovascular system because nothing could go through my digestive system. That was done via a PICC line in my arm. They also added a J drain into my back, so any fluid leaking from the leak could be drained. The PICC line, the TPN (which had to be administered every 12 hours), and the J drain stayed with me pretty much most of the summer. It was a nightmare.
Fast forward to September 2018 and finally able to be ambulatory and somewhat normal, we resumed chemo. This is called adjuvant chemo or mop up chemo to hopefully kill any remaining cancer cells. It seemed to have worked because scans and the utilization of liquid biopsies were coming back as no evidence of disease. Of course, I was still very sick but happy and enjoying life because of the results and was very optimistic.
It might be fun to add that while all of this was going on, due to such high medical bills for the best medical care, I had to sell my 5,000 square foot home, where I raised my two boys to move into something that would allow for me to have an additional $500-$700 medical expense budget.
Of course, my buyer demanded we close two days after my 12th and final round of chemotherapy. On November 15, 2018, with the day before being in the ’60s as far as temperature, it started to snow, and that snow became a blizzard. Moving isn’t easy on any given day, but this was exceptionally hard.
I was fortunate to have my disabled sister’s house to move into with my then 13-year-old son. However, we did have to reside in the basement, which was finished but did not have a bathroom. Just coming off chemotherapy and living not close to a bathroom is tricky stuff indeed.
Happily, in early 2019 we found a home we love in an adult 55+ community, and it was a year of healing, gaining strength back, and embracing all that was good.
As I continue my battle, I have learned that we must be our own advocates and work with our doctors as a team. If you do not like your doctor, do not stay with them but line up a doctor you do like first.
Social media support groups are the absolute BEST! Without them, I would not know a fraction of what I know, and I would feel alone. Because of many different social media groups, many of which I now administer, I feel I am still alive. Up to the most current treatments and therapies for my disease PLUS, I am helping others.
In 2020, right before the pandemic hit, and we live in NJ, the second hardest state hit, a recurrence was discovered via a CT scan, and liquid biopsies were coming back positive for ctDNA. This time it was in my peritoneum outside a section of the liver that had been resected. This was probably from seeding. Rare, very rare, but it happened indeed. Guardant Liquid Biopsies were picking something up. Mutations that were not in my Sold Tumor Panel Report were there. Something was brewing, and we were alerted to it.
Fortunately, again, it was able to be resected. Resection was done on March 5, 2020, and on March 13, 2020, our state and PA was sent into lockdown. NOTE: I strongly suggest no one ever go through a stage 4 cancer recurrence during a pandemic.
Having absolutely no control over my care, all I could do was sit home, locked down, heal from surgery, and try to make telamed appointments with top oncologists to plan how we would treat this recurrence and hope for the best.
Long story short, my new oncologist was suggesting additional biomarker testing, and thank goodness he did. NOTE: I fired my previous oncologist because although we had indications something was brewing, even scans that showed it, she was not as proactive as I needed her to be.
This is where biomarkers finally came into my story. My new, progressive oncologist tested additional biomarkers and discovered I had a TMB of 15.4 and PDL1 expression of 26. Although I was considered MSS, not MS1-H, he felt immunotherapy could be a valid option.
I consulted with three top oncologists in the Northeast from John Hopkins and Jefferson via telamed and they all agreed. This is just about the time when the FDA approved certain immunotherapies for certain cancers with certain TMB’s.
Because I had affiliations with Bristol Myers Squibb (my deceased brother used to work for them, and their faculty softball fields are named after him at their Princeton, NJ location), we decided to go with Opdivo instead of Keytruda. We also added Yervoy to the mix for 4 cycles, 3 weeks apart.
It should be stated that when I was resected in March 2020, I prepared the surgeon to do a Signatera Liquid Biopsy. I connected with Natera. Natera is a company that is doing liquid biopsies for ctDNA (namely Signatera), I called the company, made arrangements with them for testing, and ordered the tests myself, telling my new oncologist I was doing it. They sent a mobile phlebotomist to my home to take the blood sample.
Here is a brief breakdown of how the Signatera liquid biopsies went.
March 2020 – test came back positive for ctDNA at 1.8 M/ML
April 2020 – test came back positive for ctDNA at 3.8 M/MLMay 2020 – test came back positive for ctDNA at 7.7 M/ML
We knew the cancer was growing, and now it was showing up in a cardiophrenic lymph node by my heart. We needed to act quickly.
Fast forward to only 2 rounds of Opdivo and Yervoy (ipi / nivo) and a repeat of the Signatera Liquid Biopsy.
On a Sunday morning at 8:00 AM, my oncologist called me to tell me the Signatera liquid biopsy was 0 – zero, zilch, nada, nothing.
We immediately made arrangements for a PET scan, and the cardiophrenic lymph node was completely absent of any cancer. Anything that had been visible prior was now completely gone.
At this point, we are now waiting on another Signatera liquid biopsy and an upcoming PET scan. Fingers crossed.
Always hopeful, always trying to embrace the positive, and again, fingers crossed.