- Digestive problems lead to stage IV PNET diagnosis
- Treatment with CAPTEM and radioembolization
- Pancreatectomy surgery
- Peptide receptor radionuclide therapy (PRRT) for my liver metastases
On October 21, 2014, I was diagnosed with stage IV pancreatic neuroendocrine cancer (PNET) with metastatic liver disease. I was 30 years old.
The year 2014 brought big changes for me and my fiancé of eight years. We moved from New York to my hometown of Denver, Colorado and I launched a local retail store for my fashion styling and interior design business. Right around the time of our move, all of my bowel movements became diarrhea. I saw my GI in Denver to discuss this and he concluded that it was probably caused by irritable bowel syndrome from stress. I accepted this diagnosis since I was otherwise healthy, fit, and energetic. The stresses piled up, with deaths in both of our families. The diarrhea worsened and I also began having flushes.
By the time I officially opened my store in October I had lost 20 lbs without any changes to my diet or exercise. Shortly after the opening I woke up with this excruciating pain in my back that wrapped around to my stomach. My GI ran some blood tests and sent me home even though I was in agony. At 6 a.m. the next day my doctor called with my blood test results: I had pancreatitis. This was extremely unusual for somebody who didn’t smoke and drank very little. He sent me for an ultrasound that afternoon to investigate further. The ultrasound was unbearably painful—I thought maybe the tech was pushing too hard. As my fiancé was driving me home, my GI called and said, “Amy, you have a giant mass in your pancreas and thousands of lesions in your liver. This looks like pancreatic cancer and it looks bad. I need you to pack a bag and get to the hospital immediately. I will meet you in the emergency room. You will be staying indefinitely.”
Confirming the Diagnosis
I remember walking into my closet and picking out full work outfits to pack for my hospital stay. My fiancé gently redirected me to pajamas and athleisure. I spent a few moments sobbing on the floor then pulled it together, packed the bag, and we were off to the hospital. I was physically weak from the pain and from being underweight, but I was mentally engaged and preparing to go to war.
In the emergency room I was given strong medication for the pain and nausea. A CT scan confirmed the results of the ultrasound, and I was admitted to the hospital, with a biopsy scheduled for the next morning. I was still hopeful that there was some other explanation for these findings, but the reality that I had very advanced pancreatic cancer had set in for my fiancé and the few others that we had made aware of the situation.
The biopsy confirmed the diagnosis but we wouldn’t find out whether it was adenocarcinoma or neuroendocrine until the next morning. Given the heavy tumor burden on my liver, my prognosis with adenocarcinoma would be no more than a couple of weeks, while with slower- growing neuroendocrine it would be more like a year.
The next morning my GI shared the results of the biopsy with me, my fiancé, and my parents. He said, “Good news—it’s neuroendocrine. The bad news is that you have probably had this growing inside of you for close to 10 years and it is well past the point of treatment. I’m going to introduce you to one of the top pancreatic oncologists to manage your care from here. We have already discussed your case and you have only palliative options to make you as comfortable as possible for the time you have left.” My parents and fiancé were crying while I sat there calmly. My GI kept asking me if I understood what he was saying . . . that I was going to die . . . and soon. Time and again, I said yes, I hear you. I understand.
But I did not believe him. I didn’t feel like I was dying. Although he said my scan resembled an obese 70-year-old male who was a lifetime smoker and drinker, I wasn’t any of those things so I knew that my case would inherently be different. And I faced death at age 15 when I was hit by a drunk driver, so I had learned at a very young age about the fragility of life. Sure, I wanted a family and to write a book, but I had accomplished every other dream I ever had. If this was my time, I still had enough for it to have been a life well-lived.
Finding a Doctor
I stayed in the hospital about six days to recover from the pancreatitis. By the time I was released, I had appointments scheduled with the top PNET doctors across the country. My local oncologist, Dr. Allen Cohn, of Rocky Mountain Cancer Centers, had more expertise in adenocarcinoma so he agreed to administer my treatment in Denver under the guidance of a neuroendocrine-focused team of my choosing. I met many different elite doctors but I chose the one who saw me as an individual case rather than just another PNET statistic. Dr. Michelle Kim of Mount Sinai Hospital in New York is a GI doctor with a specialty in PNET, as opposed to an oncologist. I shared my story with her, explaining that I was on this planet for a reason, and that might be to change the course of how PNETs are treated, for those facing a similar diagnosis in the future. I told her that I was going to fight this no matter what, and why don’t we fight this together? I could see a glimmer of hope in her face—Dr. Kim was in!
The First Phase of Treatment
The results from my initial OctreoScan (a special type of scan that is used for some tumors) and blood tests came back. I had the neuroendocrine subtype gastrinoma and my tumors were very active, excreting tremendous levels of gastrin (stomach acid), hence my long history of H. pylori, B12 deficiency, diarrhea, and flushing. Dr. Kim prescribed me a supersize dose of omeprazole. Back in Denver, I went to Dr. Cohn’s office for my first monthly Sandostatin injection to try and get my gastrin-related tumor symptoms in check. I was on morphine and Dilaudid for pain and Zofran for nausea.
During this time, my fiancé and I decided to freeze embryos before I started chemo, but the procedure was not successful. Cancer had inevitably changed my future and now a biological child was almost certainly out of the question for me.
My fiancé found that the two things proven to prolong a cancer patient’s life were dogs and yoga. He got me a puggle puppy, Bob, just days before I began my chemo. I started private yoga lessons once I began treatment.
The omeprazole seemed to improve my stomach acid but I was still struggling with diarrhea and flushing so my Sandostatin was increased to two monthly injections. I was still about 20 lbs below normal.
Dr. Kim had a two-stage plan for me. She wanted me to be a candidate for surgery to remove the tumor on my pancreas. Then, I would undergo a liver transplant, because the tumor burden on my liver was so extreme that the only way to eradicate the tumors was a transplant. I would need to undergo six cycles of CAPTEM chemotherapy followed by radioembolization of both the right and left lobe of my liver. All of these treatments had to be successful in order for me to be considered for surgery. Lots of hurdles . . . .
At the tumor clinic at the University of Colorado Hospital I began treatment with CAPTEM, an aggressive oral chemo regimen of Xeloda twice a day for 14 days, and then beginning on day 10, the addition of Temodar in the evening, with 14 days of rest after. The first few days of treatment I was lethargic but moderately functional; however, by day seven, I was exhausted, extremely nauseous, and just uncomfortable all the time. Once the Temodar kicked in, I felt even worse—I couldn’t even read or watch TV. Aside from my morning yoga and massage, I lay in bed with my pup resting on my liver for the next 12 days. Although I was weak and miserable I made sure to get out of bed, clean myself, and change my clothes every day. I would sometimes take marijuana edibles to make the day pass faster and make me a little bit giggly and hungry. Around day 23 I started to feel normal, with five days to get my strength back before starting again.
The chemo caused potassium and iron deficiencies, as well as terrible neuropathy and cramping in my limbs. The Sandostatin, even at the higher rate, did not seem to be improving my diarrhea. But after two cycles of CAPTEM, I had my first scan and it showed some shrinking of all my tumors. This was a good sign. After a four-week treatment break, I underwent radioembolization with Dr. Charles Nutting. In this procedure, while you are sedated, tens of thousands of beads containing the radioactive isotope Yttrium-90 (Y90) are injected through your groin to attack the tumors in the liver directly. On the day of the procedure, Dr. Nutting prayed with me and for me before starting. I was home by that afternoon and feeling pretty normal.
As part of the treatment I began taking prednisone, my first experience with steroids. The Y90 seemed to be a success but the steroids had a disastrous toll on my body. At first, I felt more energized, but within three weeks I had gained almost 50 lbs, going from 85 to 135 lbs, overweight for my five-foot frame. The steroids caused the weight to gather in my face, neck, upper back, and belly. I was completely unrecognizable. The doctors kept saying how great I looked because it was better to be overweight than underweight when fighting cancer. In addition, I started losing my hair. I already felt cancer had stolen my future and now it made me unrecognizable. But after another two months my next scan showed that I had a strong response to the Y90.
I did another four rounds of CAPTEM, each significantly more difficult on my body. Along with the previous side effects, I developed hand-foot syndrome, which worsened each time. When I felt well enough, I would run four to five miles a day to try and maintain some level of fitness. I also met with a nutritionist to restart my metabolism after the steroids. I went on a low-carb, high protein, heavy greens and cruciferous vegetables diet, which helped only a little.
The Second Phase of Treatment
During this time, I was introduced to Dr. Richard Schulick, the chair of surgery at University of Colorado, who would potentially be performing my pancreatectomy. My next scans showed more slight improvements, so Dr. Schulick agreed to open me up. He would decide if it was worthwhile to remove the primary tumor when he saw the extent of the cancer with his own eyes.
On September 25, 2015, I had surgery that lasted eight hours, at University of Colorado Hospital. Dr. Schulick was thrilled to find minimal spread to my liver despite the thousands of lesions there. He performed a distal pancreatectomy, splenectomy, cholecystectomy, and removed 23 lymph nodes (only two had evidence of disease) to eliminate any microscopic spread that he may have missed. When I woke from surgery, he was at my bedside smiling. My insides were remarkably clean given the stage of my cancer. He agreed to present me as a candidate to the liver transplant board. I returned home after seven days and spent the next six weeks recovering.
After the surgery, my diarrhea stopped completely! I became even more iron deficient, but I did not develop diabetes or any enzyme-related side effects.
Trying New Techniques
At the end of December, 2015, Dr. Kim asked me to meet with her team at Mount Sinai. I met with her predecessor, Dr. Richard Warner, her oncologist partner, and her liver transplant surgeon, Dr. Myron Schwartz. We agreed that the next steps should be two more rounds of CAPTEM and that I should take part in a trial for the Gallium PET scan. The doctors were worried that this scan would show many metastases scattered throughout my bones and body. Much to everyone’s surprise and relief, the scan only showed the active tumors in my liver.
With two additional CAPTEM cycles, my side effects continued to worsen. I couldn’t put any pressure on the soles of my feet and developed five deep vein thromboses (DVTs) in my left leg.
A young neuroendocrine prodigy, Dr. Eric Liu, joined Dr. Cohn’s practice. I really had an unparalleled team of experts on my case.
I underwent extensive screening to get on the liver transplant list and was approved even though I somehow still had great liver function. My best bet for transplant would be a living donor, so they began testing family members.
Based on my Gallium scan, Dr. Kim and Dr. Lui suggested that I try peptide receptor radionuclide therapy (PRRT) for my liver tumors, at Excel Diagnostic in Houston, Texas. PRRT was not yet FDA-approved but it was being administered via The Right to Try law. The procedure had successfully been used in Europe for nearly 20 years. PRRT treatment makes you radioactive, so I had to isolate locally for three days before travelling home. I also had to have daily scans until I left. Once home, I still needed to be isolated from anybody immunosuppressed, small dogs, and children for another week. I had PRRT four times, once every six weeks. My first PRRT was on my 32nd birthday, July 20, 2016, and my fourth and final PRRT was on December 28, 2016. PRRT gave me very manageable side effects: some pain, lethargy, and a pretty fabulous radioactive glow.
I still was unable to have the liver transplant, because none of the potential donors—family or friends—were approved by my transplant team.
A Major Side Effect Leads to a Positive Discovery
In January of 2017 I was found to have avascular necrosis in my shoulder, caused by either the chemo or the steroids. The joint was disintegrating, and I would need a full shoulder replacement.
Around this time, I also decided to wean off of narcotic pain medication after years of use, and experienced a wide range of physiological side effects. I needed to be opioid-free for six months before the shoulder replacement, so I scheduled it for mid-February 2018.
Two days before my shoulder replacement, we finally found a liver donor match in one of my lifelong friends. I went forward with the shoulder replacement as planned, pushing the liver transplant to six months later (as recommended by my doctors).
While recovering from my shoulder replacement, I had another Gallium scan, which showed that 80 percent of the tumor burden in my liver had disappeared and the rest of the tumors appeared necrotic and were continuing to shrink. I couldn’t believe this fantastic result! It did not make sense to do a liver transplant if my tumors were still shrinking. My doctors didn’t know how long I would have such a response to the PRRT but they were hopeful that I could have years of stabilization. I could do this treatment again if need be and likely have similar results. My doctors started referring to my case as chronic instead of critical.
Currently my treatment regimen is monthly Sandostatin injections, scans every four to six months, omeprazole, Compazine and lorazepam for nausea, and Xarelto for the DVTs.
Reclaiming My Life
While there will always be a great deal of uncertainty in my health, I took this stroke of good luck as an opportunity to reclaim my life outside of cancer. I went on a diet, I worked out, I went to therapy, I got rid of the toxic relationships in my life, and I started to recognize the person that I used to be. I also saw this stronger, wiser, more compassionate, and extremely grateful individual emerge. I wasn’t ready to start planning for a future, but I started living by the week instead of by the day.
My 12-year relationship had crumbled during treatment. I realized that an incurable cancer diagnosis didn’t make me the leading bachelorette. But somehow I met the man of my dreams and married him in under a year. Four days after our wedding, I had another scan. My tumors are shrinking significantly again with no additional treatment! I believe in miracles because I am a miracle . . . .
Even though I will always be living in that in-between, I am planning for the future! My husband and I now have a surrogate carrying our baby girl. And I’m starting to believe that my purpose wasn’t survival, my purpose was so that she could be born.
I am so proud of who I have become while persevering through this war. It was so hard. I put on a positive and optimistic front for all of my cheerleaders, but I was alone in my heart and I was so afraid that one more blow and that would be it for me. But I somehow remained intact, the fear was gone and I was more alive than ever before! I am so grateful for this borrowed time and I know how insanely lucky I am to have it and also how fleeting it may be. I can promise you with confidence that it will not be wasted! I am dedicated to being my best and giving all that I can to walk with others through this darkness and back into the light.
Amy tells her story in her video “I’m Going to Beat This.”