My name is Peter. I was diagnosed in March 2006, with Stage IV duodenal adenocarcinoma with liver mets. I've gone through 11 rounds of Folfox, had a Whipple procedure, and am back on chemo (Ironotecan systemically and FUDR through an HAI pump).
My mood swings between despair and grudging acceptance. I am a 6'1" fifty year old man that's spent a good part of my adult life being athletic. I don't drink, smoke, do drugs and am in good shape. I have a wife and an eleven year old son that I want to watch grow up. I try to remain strong for him and my wife; but it's hard for all of us. I hear the statistics and try to remain upbeat by hunting down stories of folks who are long-term survivors. I was healthy and fit before this and I'm hoping this gives me an edge.
In March of '06 I had an endoscopy to determine the cause of stomach pain. I was told I had cancer and that I should find an oncologist. I called a friend who was head of Thoracic oncology at UCSF in San Francisco (where I live), who got me in to see a GI oncologist and surgeon the next day. I was diagnosed with Stage 4 duodenal adenocarcinoma with liver mets. I had no lymph node involvement. I was told that the cancer was inoperable because the tumor was wrapped around too many blood vessels to separate. Plus, the real danger to my life was the liver disease and there were too many mets to ablate. The plan was to go on chemo, but that I should "get my affairs in order" because it was unlikely that the chemo would have a large effect.
In April I had a jujunostomy, which bypassed the duodenal tumor and allowed me to eat more normally. I had gone from 185 fit pounds to 145 emaciated pounds. After figuring out what drugs I needed to take in order to get my stomach working (Zelnorm worked the best), I was able to gain back about 30 pounds over three months. Although the drugs I was on - Oxaliplatin and 5FU - made me feel horrible, it became obvious that they were making a difference. My Ca 19-9 went from 5000 to 150 over the course of the next four months. The tumor and the liver mets were getting smaller.
Over lunch one day my friend the Thoracic surgeon looked at my latest CAT scan and said that the tumor looked like it had shrunk to the point that it was operable, and that using an hepatic (liver) arterial pump (HAI) after that to address the liver mets might be a viable way to go. He suggested that I get a second opinion about surgery from a good friend of his at Memorial Sloan Kettering in New York. He sent my CD on to Dr Yuman Fong (head of GI surgical oncology at Memorial), who thought it would be worth discussing. I had a phone conversation with him a week or so later, and the talk was encouraging. He thought a Whipple to remove the primary, coupled with the installation of an HAI pump to address the liver disease could be a recipe for extended life. He made no guarantees, but thought it was a reasonable course to take. He pointed out to me repeatedly that this was "pushing the envelope", but seemed doable. We made an appointment for me to go back and see him.
A couple of weeks later I went to New York and spoke to Dr. Fong and to Dr. Nancy Kemeny, a GI oncologist. Dr. Kemeny has had a lot of experience using the HAI pump in conjunction with systemic chemo to address colon cancer and has had good response. UCSF had experience using an HAI pump, but they had not combined it with systemic chemo. While UCSF was installing fewer pumps these days, Memorial was doing more and more (over 100 this year) and was getting good results. We were proceeding with the hope that a chemo regimen developed for use in colon adenocarcinoma patients would work for duodenal adenocarcinoma patients. While it was made clear to us that this double procedure would not be found in any textbook, Dr. Fong said that if one of his family members were in a similar situation, he'd consider this procedure a logical next step.
I went back to UCSF and spoke to them about the procedure. Their feeling was that it was "risky", not from the standpoint of mortality in the OR, but that it might make no difference in the length of life, and if that were the case then I'd be spending four to six weeks of whatever time I had left being miserable. While their point was valid, given my communicated desire to treat the cancer as aggressively as possible within reason, I didn't understand their reluctance. They finally told me that if I really wanted to go through with it, they would do it. I wasn't filled with confidence in their commitment to make this work. Sloan Kettering was very realistic but encouraging. UCSF was discouraging and couldn't offer anything as an alternative. It should be said that UCSF is no whole-in-the-wall. Its cancer center is well known and respected, but clearly they were less comfortable with trying something new, regardless of how logical it seemed and how willing the patient was.
We decided to go to New York for the procedure. I had a CAT scan a week before I was scheduled for the procedure to make sure everything was still doable. A week later, the day after Thanksgiving, I arrived at the hospital at 5:45 am. and was in the OR by 7am. Eight hours later I woke up in the recovery room, and my wife told me that everything had gone fine. Apparently, after opening me up, Dr. Fong looked at the tumor for fifteen minutes before deciding that he would be able to disentangle the tumor from the blood vessels that it encased. The shrinkage of the tumor caused by the chemo had more tightly encased the blood vessels and made the removal more difficult. Ultimately, he decided it was doable and spent a long, tedious time doing it. He also installed the HAI pump. It was clear to us that the decision to come back to Sloan Kettering for the procedure was a good one. My suspicion is that if I had this done at UCSF, the surgeons would have opened me up, taken a look around and then closed me up without doing the resection of the main tumor. All the folks with whom Id spoken before the surgery told me that the Memorial was "the place" and that Dr. Fong was "the man"; clearly, they were right.
Anyhow, I spent the night in the recovery room and then was moved to a double room on the "liver floor" the next morning. I had a NG tube, a Foley catheter, and a pancreatic drain. The NG tube came out in two days, the Foley in three days, and the pancreatic drain came out on day seven, the day I left. I was very lucky - I was told to expect at least a ten to fourteen day stay, and possibly longer.
The first two weeks out of the hospital went well. I walked a mile or two and took Tylenol each day, and took 10MG of Oxycodone at night to sleep. After three weeks, my stomach "woke up" and started to give me considerable pain. Dr. Fong told me that this was normal and to keep eating small meals every couple of hours. I ended up taking some Oxycodone during the day to deal with the pain, and over the next couple of weeks the pain resolved enough that I backed off the Oxy. I still have some discomfort, but not enough to take meds during the day. I'm down to 5MG of Oxy at night. I lost about twenty five pounds since the surgery and need to gain the weight back, but this was expected.
Now we're just waiting to see if the liver pump and systemic chemo combo shrinks my liver mets and keeps the cancer from spreading. I'm due to have a CAT in three weeks, which will be three months after the surgery; that should give us our first clue.
Regardless of whether or not this procedure extends my life, I'm glad to have had the chance to give it a shot. Clearly, this is not considered a "normal" treatment protocol for duodenal cancer, but may offer a logical path for you. I can't say enough good things about Dr. Fong and his staff. If you're looking for a second opinion, he'd be a good person with whom to consult.
Update 3/29/07The CT scan I had showed that the liver tumors are shrinking, and my CA19-9 tumor marker has gone from about 4,500 to 1,700 - both improvements and very good news. There has been a couple of times when my liver enzymes have been elevated enough to warrant putting the pump chemo on hold, but with a reduction in dose, that problem seems to have been resolved.
My eating has improved so that I have almost no pain now. I'm eating better than before I was diagnosed, and am gaining about one and a half or two pounds a week. I feel good and have plenty of energy - at least after I recover from my bi-weekly chemo.
I was concerned after the surgery because Dr. Fong had left the anastomosis in place from my earlier jejunostomy and did not connect the upper intestine to the bottom of my stomach as is typical in a Whipple. Although I could eat enough to gain weight, my stomach wasn't emptying all that well after the jejunostomy, and I was concerned that this might be a cause for further discomfort. Dr. Fong suspected that my stomach would be less "confused" with only one opening to work with and that emptying of my stomach would go easier. This has proven to be the case. My stomach seems to be emptying well, I haven't needed the Zelnorm, and I can eat steak and spicy foods again. Even if I don't live any longer, at least I can eat now!
I know some (many?) folks haven't had an easy go of the Whipple, and I wouldn't call my experience a walk in the park, I think that if one is in decent health and has a good surgeon, that one can come out of it in better shape than when one went in. Anyhow, the battle goes on, but at least it goes on with pizza!
Feel free to ask me questions, on the Rare Cancer Forums.
Regards, Peter Grey