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I am 47 years old, married, with two young adult children. In 1995 (at the age of 40) I experienced a sudden onset of diarrhea and gas — intermittent but potent. After a few weeks I started working with my local GP. We started with the most common causes and went through a battery of tests for infection, parasites, etc. We tried a lactose-free diet to no avail. I asked for a lactose tolerance test which was negative. I then developed painful, red lumps on my legs which were diagnosed as sarcoidosis, a condition which worried my doctor more than my intestinal complaints. I started working with a pulmonary doctor (sarcoidosis usually affects the lungs) and a CT showed I had enlarged lymph nodes in the chest. Unless other problems developed I needed no treatment, I just had to have repeat x-rays every 3-6 months. The sarcoidosis delayed my cancer diagnosis because it distracted me and the doctors from the bigger problem.

I requested a GI referral and after more testing, it was determined I had fat malabsorption. The GI doctor prescribed enzymes, telling me I had a sluggish pancreas, and that I could just call his office for refills. No need to even come back to see him. I wasn't satisfied with this. It seemed like taking Tylenol® for a headache without finding out if it was sinusitis or a brain tumor. I pushed for more tests and had an upper GI, abdominal CT, and ERCP followed by CT. Their ultimate diagnosis was pancreatic cysts - no tumors. No treatment was needed except the enzymes and a low-fat diet. Yahoo, I thought!

However, my husband, being a practical, hands-on kind of guy, thought my pancreas should be able to somehow be "roto-rootered" out and fixed up. (After all, I couldn't have a hamburger and fries on the low-fat diet, and this was unthinkable.) I requested a second opinion at Mayo Clinic and met with one of the top pancreas specialists in the country there. After taking my history, he looked at my home CT scans and quietly told me it was tumors, not cysts. It literally took just minutes to be correctly diagnosed. I had surgery at Mayo shortly after that. I had Stage II mucinous cystadenocarcinoma at that time - not the more common, more aggressive type of pancreatic cancer. My entire pancreas, spleen, gall bladder, part of duodenum, and portal vein were resected, by two very skilled surgeons, in about nine hours. I was in the hospital for three weeks and had a slow recovery at home. I returned to work part-time after six weeks and gradually increased my hours back to full-time.

I initially had no chemo or radiation since it is not thought to be effective on this uncommon type of pancreatic cancer. Although slow-growing and less aggressive, this also makes it unresponsive to chemo. A few months after surgery several spots showed up on CT where the pancreas had been, around the porta, and later, on the liver. A CT needle biopsy on the liver spot in November, 1998, was negative. A few months later, however, the spot was slightly larger and I underwent an exploratory laparotomy, to hopefully remove the suspected tumors. The mets were inoperable and because of the widespread abdominal seeding (baby tumors) they found, radiation was not an option. The adhesions in the abdominal cavity were cleaned up and two catheters were placed for intra-abdominal chemo - 5FU and P32. This was given three days consecutively. Follow-up CT showed this treatment didn't work, which didn't really surprise anyone.

Although chemo was not the treatment of choice (or even logical), surgery wasn't an option anymore. Mayo recommended trying Gemzar®, even though they had no evidence that it would be helpful. I was frustrated by the lack of data about the type of pancreatic cancer I have and decided to try the Gemzar®, if only to create some data for other patients down the line. My sister did some research and found SuperGen's RFS 2000 trial, which surprisingly enough was right here in my own home town.

I was randomized to Gemzar® in September, 1999, and for the next two and a half years it held the tumors. When I was able to tolerate larger doses of Gemzar® I even had some significant shrinkage of one tumor. I had a port installed when I started chemo and developed a blood clot in my neck so was started on Coumadin®, which I continue to take. In January, 2002, the Gemzar® finally failed and I was rolled over to the experimental arm of SuperGen's study. I was hopeful that rubitecan would work and welcomed taking oral chemo, even if it meant drinking a couple liters of water a day. After four months the rubitecan failed too, and my onc recommended trying Gemzar® and Taxotere. I have been on that treatment since June, 2002, and it has been tough. I am getting larger doses of Gemzar® than I was when I started treatment in '99, and the Taxotere seems to have more side effects. I also take Neupogen® shots and these seem to cause severe bone pain.

Chemo has not been without its problems - the nausea, body aches, etc. (which we call the "chemo yuck"), lack of energy, low red and white cells, problems with blood sugar, etc. Almost all of my hair has fallen out, including my eyelashes and eyebrows. I think I am starting to look like an alien! Back in 1999, I was very apprehensive about starting chemo. I thought I would be so sick every day that I would live on the couch or in the bathroom. It has not been that bad, but I do have some days when I think I just can't do it anymore. But symptoms improve, and I start to feel stronger and think, "I can do this another week." And so, here it is, three years later. Hard to believe. I took a leap of faith back then, decided to try something that should not have worked at all, and have made it this far. Although I am missing quite a few of them now, I learned to trust my "gut" instincts, no matter what logic or reason seemed to say.

My family has maintained a sense of humor throughout this and we try to laugh about even the worst things. We are somewhat disrespectful of the disease and this has worked for us — gallows humor at its best. I think that if you don't laugh about it, you will probably drown in your tears.

The local oncology group I have worked with for the past three years has been wonderful. I don't think that I could have done this, week after week, month after month, year after year, without them. It is their humanity, kindness and concern that help keep me, and so many other patients, going strong. I can't deal with the clinical "white coat" approach that you sometimes find in medical care. I have been fortunate, both here in northern Illinois and at Mayo, to work with some great people.

I have tried to approach this experience as a way to help other people. Because of my history of misdiagnosis, I encourage other people to get a second opinion if they have any doubts. I felt so foolish when I first went to Mayo. I thought they would laugh me out of the building — of course my local doctors knew what they were doing. Instead, by going to Mayo, I believe I played a part in saving my own life.

I always thought I lived every day to the fullest before, but I really do now. Some days the world is so beautiful, in such simple ways, that it is a joy just to be on the planet. I have told people that we should all know what it is like to have cancer, not to experience the bad things, but to know the good that can come of it.

I was initially given a 30-60% chance of survival for three years. (When I first met my Mayo onc a few months after surgery I evidently looked pretty rough. He later told me that patients who looked like I did then usually didn't make it a year — so much for statistics!) I think I am a realistic optimist about my cancer. I have always expected to do well but I also know that I will likely die of it (providing our local drivers don't take me out in a car accident). When it will happen is anybody's guess and I don't dwell too much on that. Right now I am busy living with pancreatic cancer, not dying of it.

Posted 11/13/1998 04:55 pm by Robin
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