Well, it's been about 5 months since my last update, and this one is long overdue.
My last post talked about the rounds of Xeloda I had, and how my tumor markers went down (from 8.2 to 5.0). And that my CT scan done on June 26th, was stable. Well, since then, things have changed.
On Sept 11, I had another blood test and my tumor markers (CEA) went up from 5.0 in June to 10.1. My CA 19-9 went from went from 79 to 96. Just to make sure this wasn't some fluke, we had them taken again on Sept 22. CEA was 10.0 and CA 19-9 went up even higher to 106. It wasn't a fluke.
After consulting with my oncologist, we decided to get another CT scan, which I finally had on Oct 31st. That also did not have much good news. Well, it wasn't horrible news, but it wasn't great either. On previous scans, three spots showed up of possible tumor recurrence. On this CT scan, two of those were stable, but one of them doubled in size. It is still relatively small, and thankfully slow growing. Oh, and I have a hernia.
So, with reports and films in hand, we headed down to Baltimore, MD to consult with Dr. Esquival (at St. Agnes hospital), who is one of the specialists for this disease. For those of you who don't know, Dr. Esquival assisted Dr. Sugarbaker when I had my surgery at Washington Hospital Center in DC about 4 and a half years ago. We also met with him in Jan of this year, so he is fairly familiar with my situation.
After some quick poking and prodding, he told us first that he was surprised that my hernia was caused by my bladder. Usually it is the small intestines that cause hernias, but I just had to be different. He said as long as it wasn't causing me any problems, he saw no reason to go in and operate.
The next thing he told us is that even though my original pathology report showed aggressive signet ring cells, and that I had 3 positive lymph nodes, which put me in the "high-grade" category, he was now placing me in the "low-grade" category.
He also told us that looking at the tumor markers and the CT scan, he wasn't quite sure what was going on. He said that there was a lymph node near where the growing tumor was and that he wanted to find out if there was anything else going on. He said I should get a PET scan to find out. If the lymph node "lights up" on the PET scan, he is going to recommend a complete round of chemo. that is 6 cycles of Oxiliplatin and Xeloda (or Xelox protocol). This is what I had originally in Dec 03 to Jun 04, with an operation in between to break it up. And I only had 4 cycles. Two before the surgery and two after. It certainly wasn't fun, and my hope is the lymph node DOES NOT "light up".
If the PET scan is clean, then the doctor said that we just continue to watch and wait. As long as there are no symptoms, there is no reason to go and operate and possibly decrease my quality of life.
So, that is where we stand now. A PET scan with possible chemo, or not. And more watching and waiting. For now, I have staved off another surgery, but barring a miracle, one will most likely be in my future at some point. The good news is that where the tumor is, the doctor said there is absolutely no chance of having an ostomy. And with all of the advancements being made, there is always a chance I will continue to live with this for a long time. And that is our prayer.
Thank you all for your love, concern, prayers, etc. They are more appreciated than you can imagine.
Kevin
