The pancreas is an organ below the stomach and to the back that regulates blood sugar and makes many enzymes necessary to digest certain foods, especially fat. It makes no sense to take out the entire pancreas unless absolutely necessary -- you would be a diabetic immediately -- hence if this cancer has been resected successfully, the remaining parts of your pancreas could, in principle, develop the same cancer again. Often the cancer reappears in the old locale. Why this is so appears to be unknown.Do Not Wait
If you have been diagnosed with pancreatic cancer, it is a matter of life and death to act immediately and intelligently:
The difference between the cancer spreading throughout the lymph system or the blood stream can be as little as a day. Do not postpone surgery unless there is a compelling alternative treatment. Moreover, in many places oncologists have not adopted the latest therapies. If the oncologist tells you that not much has changed in the last 20 years, do not believe it. Go to another institution, one where they do the research or, at the very least, keep up with it. This cancer is deadly, just look up the statistics.
Sadly, most of the cases that I have learned about since my own run-in with this disease have ended within a few months. The reasons were varied: the diagnosis came too late, the time between diagnosis and surgery was too long, the after-treatment was ineffectual. Every delay, every suggestion to do a less rigorous regimen of chemo and radiation may sound like a welcome reprieve to the shocked patient, but it is an illusion and it costs dearly as I have observed.
In my case, the tumor was found to be invading a major vein. It had started, but pathology showed that it had not yet penetrated into the interior. If it had, there would have followed metastatic tumors that could have been anywhere throughout the body, hard to find, almost impossible to combat. We pressed for having surgery scheduled fast and succeeded in getting surgery within 7 days from the diagnosis. Another day could have meant full penetration of the vein and the cancer spreading.
Symptoms and Risk Factors
Pancreatic cancer has almost no symptoms until it reaches late stages. Moreover, it tends to invade adjacent organs and major blood vessels rather soon after penetrating out of the pancreas. I have been told that this cancer has several different mechanisms for growing and that this might be why it is a difficult cancer to treat comprehensively with chemotherapy and radiation.
The risk factors for pancreatic cancer are family history, excessive drinking and smoking. None of these apply in my case. By the time the cancer was diagnosed, it was transitioning to stage 3 and had invaded the duodenum, the first part of the small intestine. The symptoms, in my case, were unspectacular. Mild pain in the back (middle to upper part), occasional mild stomach ache, and feeling bloated. During the day I would forget about these symptoms when I engaged in work or social situations, and at night I would occasionally take a Tylenol PM. I thought I had developed ulcers. Fortunately, my internist took it as a challenge to get to the bottom of this. First, he excluded ulcers by a trial period of Nexium. When that did not end the problem, he ordered CT scans and referred me to specialists since the pancreatic duct showed an enlargement. They eventually diagnosed the true condition by an endoscopy. The cancer type was adeno-carcinoma, the most common type, and deadly.
Surgery
ResearchWhen the cancer is at the head of the pancreas, an operation (called the Whipple procedure) is necessary. The tumor can be shrunk by several strategies before the operation. Post-operative chemo and/or radiation are also done. For many years the cancer was considered intractable, but recently some developments in research promise better statistics for survival and the numbers have improved slightly since 2004.
The Whipple is major surgery, but it remains the only option for treating pancreatic cancer successfully when the tumor is at the head of the pancreas (the common case).
The M. D. Anderson ProtocolDue to the absence of symptoms it is often the case that the cancer is deemed inoperative by the time it is discovered. I am told that in 95% of the cases it is too late for the full operation. The newest developments to treat this cancer that I know about are as follows:
- There are experiments at UC Irvine to kill the primary tumor by injections of TNF-erade. This is a pre-operative treatment, see, e.g., an abstract of the procedure.
- An aggressive mix of chemo and radiation, the Seattle protocol, also known as the Virginia Mason protocol, seems to improve post-operative survival a great deal. A second, modified version is in trial at the M.D.Anderson Cancer Center in Houston. Here is a description. See also below.
- At Johns Hopkins, an immune boosting treatment (colloquially called pancreas cancer vaccine) is in trial. My understanding of the concept, as of 2007, is to teach the immune system about specific proteins that are characteristic of the cancer cells, whereupon the immune system then attacks and kills those cells. The vaccine is derived from two cell lines and its effectiveness is correlated to the degree to which the patient's cancer mutation is "close" to those cell lines. One imagines that eventually such vaccines could be derived from the individual's tumor cells, "customizing" it for better effect.
- In Europe, a French/German trial study is looking at whether a new chemotherapy agent is more effective than the standard chemo agent 5-FU that is currently used.
This is my understanding as of the summer of 2004. Based on this information and the fact that the surgery was done seven days after the diagnosis, I elected to undertake the modified Seattle protocol at M. D. Anderson. Satisfying the prerequisites, I was admitted formally in July of 2004.
The treatment stretches over a span of six to seven months. The first step is the hardest and takes approximately seven weeks, with a one-week break in the middle during which the patient rests from the treatment. The treatment of this first step is as follows:Side-Effects
- A continuous (24/7) infusion of 5-FU, a standard chemo agent used in pancreatic cancer cases.
- Radiation of the original cancer site every week day.
- Injection with Interferon A three times a week.
- Infusion of Cisplatin, another chemo agent once a week.
After this first step, there follows a rest period of about 3 weeks, and then come two 6-week periods with continuous 5-FU infusion. The protocol is in clinical trial stage and a median time for survival has not yet been established. In my own case, the treatment began July 19, 2004 and ended January 24, 2005. What comes next are periodic checkups for the foreseeable future, hopefully all showing no recurrence.
Chemo and radiation have some side effects that are at the very least uncomfortable. While radiation is mostly local, chemo is global. I found it helpful to read a book on the subject. I read "The Chemotherapy and Radiation Therapy Survival Guide," by J. McKay and N. Hirano.The Longer TermThe side effects of chemo are due to the fact that chemo therapy attacks all cells that frequently reproduce. That includes the cancer, but also the mucous lining, the hair follicles, and the blood cells. Common side-effects are mouth sores, diarrhea, nausea and vomiting, loss of hair, fatigue, a weakened immune system, inefficient oxygen transport, and difficulty stopping bleeding. Much can be controlled with medication. Against mouth sores I found it effective to rinse the mouth with a solution of baking soda which neutralizes acids and germs that would aggravate the sores. I did this every time I would eat or drink anything, and kept it up the entire time of my treatment. Here, too, starting right away is helpful. While I did not escape mouth sores, I delayed their onset a long time and they healed during the one week break.
It is important to keep up fluids and nutrition, both a challenge since one does not feel like eating or drinking. Here, discipline goes a long way and pays off by reducing the severity of the discomfort.
Back to About CancerAs of September 2010, it is now over 6 years after the diagnosis and operation and I have an outstanding quality of life. People tell me they cannot believe I had this cancer. My energy level is good and I am as active in my work as I have always been. The main difference is that my food absorption is not as good as it used to be. (According to a Barbara Walters Special on religious beliefs in America, most of us are given to think of heaven as the place where we can eat as much as possible and not gain weight. By that metric, I live in heaven on earth...)
Beginning November of 2006, I have been able to reduce the amount of enzyme supplements I take with meals. The standard enzyme supplement mix is sold under the name Creon. In my case, creon did not reduce significantly my intolerance for fat and oil. Since the summer of 2006, I have used Viokase which helps much better digesting fat and oil. I still have to be careful with those ingredients in quantity, but much less so. Now that Viokase has been discontinued, I am using Zenpep, another enzyme supplement.
Another victim of this type of cancer is Prof. Randy Pausch at CMU. He successfully went through the same regimen of the M. D. Anderson Protocol. He elected to follow this up with the cancer vaccine at Johns Hopkins, right after having finished the M. D. Anderson Protocol. Tragically, Randy developed metastatic tumors almost immediately after his treatment ended in July of 2007. Randy died after a prolonged regimen of palliative chemo on July 25, 2008. Randy used the remaining time to raise awareness of pancreatic cancer, testifying before congress, appearing on television shows and taping public service announcements. His book "The Last Lecture" and the lecture he gave at Carnegie-Mellon University in September of 2007 have inspired millions of people from all walks of life.
Once pancreatic cancer metastasizes, the odds of surviving are very small, but they are not zero. Of the several cases I am aware of, the most outstanding one is that of Dr. Masellis, a cancer researcher in Minneapolis whose story has been featured in the press occasionally in recent years. See also the web site of the Pancreatic Alliance. Dr. Masellis was diagnosed with unresectable, stage 4 adeno carcinoma of the pancreas in May of 2006 and was given a few weeks to live. After six different regimens of chemo and radiation she went into remission and had good quality of life before the cancer eventually returned. Anna passed away December 28, 2008. Her approach to treatment, with a combo of several different chemo agents is becoming main stream.
Even if you cannot beat the disease, life can be prolonged by a mixture of chemo therapies and other treatments. The pattern is usually that a chemo combo works for a while but loses effectiveness due to the tumors developing resistance. When that happens, sometimes a different combination of treatments can further extend life. Such treatments include drugs that target specific biomarkers of the cancer, drugs that inhibit the formation of new blood vessels, thereby restricting the abiltiy of the tumor to grow, and various ways to engage the body's immune system. Ablation is a technique that may be used for liver tumors, and a great deal of exploratory research looks at novel ways to deliver drugs or nano particles preferentially to the cancerous lesions. Many stories can be found at the Hopkins website. The key to remember is that there are many genetic varieties of this disease and that there are occasional individuals who manage to escape the discouraging statistics.
Last updated September 8, 2010