In the beginning… (Part 2)
(FYI, this is the 2nd part of a two part description of the last 9 months. If you haven’t read Part 1, you should scroll down and read it before reading this section.)
At my follow-up appointment with Dr. Kulkarni, we discussed a variety of possible causes. For example, he suggested that I might have Primary sclerosing cholangitis (PSC), but a subsequent biopsy of the liver, did not find evidence to support that diagnosis (though, it is technically possible to have PSC in the bile duct outside of the liver and not have it inside the liver, too, but that is very uncommon). Because of the atypical epithelial cells from the first brushing, Dr. Kulkarni ordered a blood test that is a biomarker for certain kinds of gastrointestinal cancers. It came back slightly elevated; if the upper range of normal for this test is 37, my levels were in the forties. In comparison, you would expect people with active gastrointestinal cancers to have levels more around the 200, 300, 400 and higher (on the Johns Hopkins Pancreas Cancer message board, I read about one person whose levels were up over 1000). All that to say that it just didn’t seem as if the tests indicated I had cancer.
After discussing it with Dr. Kulkarni, it seemed that I had a benign stricture. We had discussed treating it was serial stenting to try and stretch out the bile duct. After the initial stenting in August, I had follow-up ERCPs in October ’07, December ’07, and February ’08. Each time, the doctor would pull out the stent and see if the bile duct would stay open. It wouldn’t. After the February procedure, I asked for a referral to another gastroenterologist for a 2nd opinion. I wondered if perhaps the 2nd opinion guy might see something, know something, that Dr. Kulkarni might not have considered.
I had my appointment with Dr. Keilin on April 15th (and you thought taxes were bad news!). On the good side, Dr. Keilin essentially told me the same thing that Dr. Kulkarni did, but he suggested getting an MRI to see what was going on outside of the bile duct (during an ERCP, the endoscope is inside the duct, so you don’t see any structures external to the bile duct). I had the MRI done the morning of April 22nd and had a follow-up appointment with Dr. Kulkarni later that afternoon.
At 3p, I was sitting in Dr. Kulkarni’s examination room when I got a call. The person on the other end said that she was calling to schedule me an appointment with a surgeon. Excuse me? Why? She had no idea, she was just scheduling me. I made the appointment for the next day, a little mystified. When Dr. Kulkarni came in, I mentioned it to him and he said he had talked with Dr. Keilin. The MRI had shown a mass on my pancreas. He suggested taking things one step at a time and see what the surgeon said.
I met Dr. Sarmiento on April 23rd. Dr. Sarmeinto told me I had a ‘fairly sizable’ mass on my pancreas and that it was ‘very, very likely pancreas cancer.’ He indicated that the tumor was not currently operable because it was wrapping around the portal vein (the vein that carries blood to the liver). He said that he talked with an oncologist and they would start me on chemotherapy and radiation therapy to hopefully shrink the tumor to allow for surgery. Dr. Sarmiento was very up-beat and positive about my outcome. Through his office, I made an appointment with an medical oncologist.
I met with Dr. Kauh on April 28th. Dr. Kauh told me that in addition to growing around the portal vein, my tumor was also touching two of the three mesenteric arteries (which carry blood to the intestines). Actually, Dr. Kauh said that the tumor was growing in the spaghetti junction of the gastrointestinal tract. Dr. Kauh is the principle investigator on a phase II/phase III clinical trial aimed at treating locally advanced, inoperable pancreas cancer. Standard of care for pancreatic cancer is treatment with chemotherapy (in this case a drug called 5FU — which is so appropriate, as I have wanted to say “FU” with regards to my situation for a while now) and radiation therapy. The experimental part of this trial involves a drug called TNFerade. From the pharmaceutical company’s (GenVec) website:
TNFerade uses GenVec’s patented adenovector technology to deliver the tumor necrosis factor-alpha gene directly into the tumor where it interacts with standard radiation therapy to produce the therapeutic protein, TNF-alpha. GenVec scientists have incorporated a radiation-inducible molecular switch into TNFerade allowing maximum gene expression and therapeutic protein secretion only when the target tissue receives standard radiation therapy. With this approach, TNFerade has the potential to make radiation therapy work better with fewer side effects.
What this means is that the TNFerade is injected directly into the tumor. The tumor cells incorporate the TNFerade material into its own genes and causes the tumor to eat itself. Preliminary evidence looks very promising. I am excited about this possibility.
Since my appointment with Dr. Kauh, I had another CT scan on Friday, May 2nd. I have a biopsy scheduled for Wednesday, May 7th; I have another ERCP procedure on Friday, May 9th; an appointment with Dr. Kauh on May, 12th, and an appointment with Dr. Landry (a radiologic oncologist) on May 13th. I am hoping that I will be able to start in the clinical trial shortly after.
Well, there you have it. A brief history of my journey thus far. I will try to add to this blog daily, if not to talk about my cancer, then to share some other insight. This blog is as much for me as it is for those of you who care enough to read it. I never quite understood the “journaling” phenomenon, but the events of the past 2 weeks has brought me clarity.
As always, thank you for joining me in this journey!
Merle