Your Survival Depends on Taking Control of What You Can
- Stage IV pancreatic cancer diagnosis
- Searching for promising treatments
- Choosing low-dose continuous chemotherapy regimen
While living and working in Kuwait, I began having pain in my abdomen and back.
A series of scans showed a suspicious mass in my pancreas and multiple lesions on my liver. I flew to the United States in search of a more definitive diagnosis and treatment, beginning at the University of North Carolina Medical Center(UNCMC) in my home state.
At UNCMC, a reading of the scans and a liver biopsy confirmed that I had a 3.2 x 2.7 cm tumor in the neck of my pancreas and among the lesions on my liver, there were two of about 1 cm. The report also noted soft tissue (from the tumor) stranding around the celiac axis. The celiac axis (or trunk) is the artery, a branch of the aorta, in the upper abdomen that supplies blood to the stomach, pancreas, liver and spleen. In other words, I had stage IV pancreatic cancer, metastasized to the liver and wrapped around the artery.
In increasing pain, I was prescribed oxycodone, which dulled the pain but made me severely constipated and mentally unfocused. I had a celiac plexus block, an outpatient procedure designed to block the pain. Although results vary for these blocks, after a week or so, my pain began to decrease; a few weeks later, it was gone.
Searching for Treatment that Could Give Me Hope
Chemotherapy was prescribed; surgery to remove the tumor would not be possible due to the arterial involvement. The oncologist I was assigned offered no hope for long-term survival. In essence, I was told that I would be given a regimen of chemotherapy until I could no longer tolerate it or my misery was so complete, I would simply give up. Consequently, my family looked for hope elsewhere.
We arrived at Cancer Treatment Centers of America (CTCA) in Arizona full of hope. I was almost immediately hospitalized for uncontrollable vomiting and remained in the hospital for nearly a week before I was diagnosed with severe esophagitis; my esophagus was swollen shut and cracked. I also had eleven ulcers. Apparently, issues of this kind are not uncommon among pancreatic cancer patients.
My scan at CTCA on 6 February 2015 showed multiple liver lesions, including one that was 1.7 x 1.7 cm and another that was 2.1 x 2.2 cm. The tumor in the body of the pancreas had increased to approximately 4.8 x 3 cm, and there was complete encasement of the celiac axis.
The first oncologist I was assigned pronounced that I had no more than a few months to a year to live. We requested a new oncologist who believed in the possibility of life and hope; we were assigned a new team.
Released from the hospital, I began chemo at CTCA, still full of hope. At my second chemo treatment (gemcitabine and Abraxane), my new oncologist told us “in good conscience” that the most he “could give me” with this therapy (the only therapy he was offering) was a few months to a year to live. Immediately, my family looked for hope elsewhere.
Choosing Low-Dose Chemotherapy
My daughter (on the Internet) and brother (consulting with the founder of a pancreatic cancer foundation) separately identified the same pancreatic cancer specialist, Dr. William Isacoff, who is affiliated with the UCLA Center for Pancreatic Diseases in Los Angeles. A gastrointestinal oncologist as well as a hematologist, he is known for the long-term survival rates of many of his patients.
We checked out his website. The record showed that he has spent his professional career—more than 40 years—working to come up with safer and more effective treatments for pancreatic cancer patients, as well as for other gastrointestinal cancer patients.
When we met with Dr. Isacoff, he interviewed me, looked over my reports and discussed how his treatment is different from standard treatment for pancreatic cancer. Referring to the long-term survival of many patients he has treated, he gave us phone numbers of patients who were willing to talk about their experiences. We were even able to meet some. He asked if we wanted to beat the odds; we did. The next day, I began treatment.
Dr. Isacoff’s treatment plan involves using low-dose continuous treatment without radiation; his patients refer to his chemotherapy regimen as his “cocktail.” The compositions of my cocktails change frequently, and I have had as few as two and as many as five different chemotherapies in one treatment session. Dr. Isacoff adjusts the chemotherapies in response to the results of my weekly blood tests, my experiences with side effects, and my scans (every three months). Generally, I receive treatments once a week for three weeks, and then I have one week off.
I rarely ask which chemotherapies I am receiving; I do know that over time I have received Avastin, gemcitabine, leucovorin, irinotecan and 5-FU. Other than the 5-FU, which is delivered by pump and which I no longer receive, I don’t know which I have been given at what time. I have had a gamut of side effects, but they have been manageable all along the way.
As I have been in treatment with Dr. Isacoff, I’ve met survivors at six, eight and 12 years out, people who have walked this walk, who were given a few months to live, like me—people who began treatment with more widespread metastasis than I had, and have survived. Each person’s story is different, everyone’s treatment is unique; their reactions to treatment and results are individual.
Cancer Responds to Treatment
In May 2015, my first scan after beginning treatment with Dr. Isacoff showed that the tumor in my pancreas had reduced more than half and the metastasis was no longer measurable. Real progress! No discernible change on the soft tissue around the blood vessel. I continued treatment.
In September 2015, my scan showed that the tumor was no longer visible at all, and the metastasis remained below measurable. A miracle! Malignant tissue was still wrapped around the blood vessel into the pancreas. Treatment continued.
In December 2015, my scan showed that there is still no visible tumor or measurable metastasis. Happy day! The tumor encasement of the celiac axis appears to have reduced slightly. And treatment continued.
In March 2016, the results of my CT scan prompted Dr. Isacoff to order a PET scan. The PET scan showed no live cancer—not even in that tissue wrapped around my celiac axis. Truly miraculous results! I still have challenges ahead—I call pancreatic cancer the gift that keeps on giving—such as a liver ablation and a surgery relative to my pancreas. These are necessary, I am told, to increase my chances for long-term survival, since pancreatic cancer often recurs, and most often at the sites it has previously inhabited. In addition, we are currently fighting high blood pressure, which can be a side effect of one of the chemotherapies. I cannot have the ablation or surgery until my blood pressure is stabilized. I am still on chemo in the interim and until I have had the surgeries. So, although enormous progress has been made, treatment continues . . .
It’s been a heck of a fight, I cannot deny, with more ahead. However, as my younger daughter (and caregiver) noted this past Mother’s Day, this was the second such celebration I’ve been around for after a number of doctors told us it was unlikely I would see one more. That put everything in perspective. We are very grateful to Dr. Isacoff, to all the people who are praying for me, and to God for His grace and mercy.
This is the story of my treatment to this point. Progress has been excellent; I could not be more encouraged—or full of hope.
In closing, I want to point out one hugely significant piece of information we picked up in this cancer war: all oncologists are not the same. Find the right oncologist, one whose practice focuses on your type of cancer. Don’t just accept the one you are assigned.
Pancreatic cancer is a rare and deadly cancer; the majority of oncologists have little experience with it and no specialized knowledge. The first three oncologists I was assigned at two different cancer centers prescribed treatments even they didn’t believe could help me survive past a few months. My family and I were ready to fight for my life; these oncologists were simply not equipped or educated in such a way that they could join us at the front.
When we began this journey, we did not know what we did not know. Now we know enough to urge you to gather your own statistics, beginning with how many patients with pancreatic cancer your doc sees in a week, a month, a year. Does your oncologist have any patients still alive that you can call and ask about their treatment experiences? How many months or years do your doc’s patients survive on average during and after treatment? How well-informed is your oncologist about research and developing therapies relative to pancreatic cancer?
Ask these questions and wait for the answers. If the answers aren’t encouraging to your long-term survival, look elsewhere. Your survival depends on taking control of what you can.
After her story was published, Sharon passed away. With deep sympathy to her family on her passing, we appreciate the gift of knowledge she courageously left, by pursuing new treatment options and openly sharing her story with Let’s Win.