It's hard to believe that it's taken me nearly 6 months to find this site. Given my background in online discussion boards and mailing lists, I somehow didn't think to look and see if there was anything like this for my cancer until within the last couple of weeks.
My name is Eriq Neale, I live in Texas, and I was diagnosed with CC back in March. I started having unusual abdominal pains in mid-January and finally went to see my doctor towards the end of February, because I was schedule to go on a week-long trip and wanted to see if he could do something about the pain while I was on the road so I wouldn't be uncomfortable while traveling. He did some blood work and found some liver enzymes that he thought were a little suspicious (on the high side of normal). He scheduled me in for a CT, which I had done on a Thursday (I was scheduled to leave town on Sunday). He called me Thursday afternoon to tell me that the CT showed something in my liver and he wanted me to have an MRI to get a better idea what was growing in my liver. He says that he arranged to have the MRI done the next day because he didn't want this to be "hanging over me" while I was traveling, but I think he saw something in the CT scan that scared him enough that he wanted the diagnosis ASAP. I had the MRI done the following morning. I got a call that Friday afternoon that they were concerned the growth might be cancer and that he wanted to schedule me for a biopsy ASAP. I cancelled my trip and scheduled the biopsy for the following week. The next night, Saturday, the abdominal pain got really intense and I started getting really nauseous, so we ended up going to the ER late that night. I got checked in for observation, and the hospitalist assigned to my case arranged for all kinds of tests to be performed. I'm probably fortunate that I did get checked into the hospital, as all those tests happened within the next two days, instead of having to schedule them as outpatient procedures. My EGD came back clean, as did the colonoscopy. Two days later, the day I was originally scheduled to have the biopsy, I had a PET scan done, and that's when the hospitalist confirmed that the tumors were likely cancer, as the PET scan showed several areas of likely cancerous growth, including a spot on the outside of the colon. I had the biopsy done the following day, and the pathology showed the tumor was likely from an upper-GI tumor, though none had been found.
We scheduled a procedure with a surgical oncologist at Methodist in Dallas to do a liver resection to remove the tumor from my liver as well as to clean out the other obvious cancerous growths in my abdomen. I had the surgery at the end of March. When he cut me open, he removed several cancerous growths that had shown up on the scans, but also saw small tumors on the underside of my diaphragm. Without major reconstructive surgery, he couldn't do anything about those tumors, so after completing the rest of the procedure successfully, he recommended that we follow up with chemotherapy. "Aggressive chemotherapy" in his words, because I was "young and in good physical health."
We started chemo at the first of May and started on Cisplatin and Gemcitabine. That next six weeks was probably the worst of my life. I lost 35 pounds because I couldn't eat thanks to the nearly-constant nausea. I couldn't move, I had to sleep in a trundle bed simply because we could lay it close to the floor so I could roll out of it and crawl into the bathroom to throw up. I tolderated the chemo so poorly that after two complete cycles, I was switched over to oxaliplatin, which did little to improve the symptoms. At the end of July, I stopped those chemo treatments and had another CT scan. Unfortunately, it showed continued growth of tumors in my abdomen, though the growth was very small. I started taking Xeloda in August, and my quality of life came back almost immediately. it wasn't a walk in the park on the Xeloda, but I never had any nausea, and I was able to start eating regularly and start regaining my strength. I also finally fully recovered from the liver surgery during that time, so I was definitely feeling better.
Unfortunately, the scan we did in November still showed continued growth of the cancer, so we're taking a two-week break and will be starting on Taxol next week. I'm told that it's well tolerated by chemo patients, but I'm not looking forward to it based on the reading I've done on Taxol, some of which ultimately led me to this site. Also, I broke a rib about 3 weeks ago, so I'm dealing with lots of additional pain meds, and i've basically spent the last two weeks flat on my back in bed. I'm hoping that I'll get some sense of "normalcy" back when the rib heals and I can cut back on the pain meds.
I'm trying to get in to MD Anderson and see if they have any other thoughts about my prognosis or additional treatments they might be able to offer. Unfortunately, I decided to wait until nearly Christmas to contact them, and they've been really, really slow about responding.
I have been keeping a journal over at Caring Bridge: http://caringbridge.org/visit/eriqneale
That has helped me cope with a lot of what I've been going through, as well as keeping our friends and family up to date with the latest information.
I'm looking forward to learning my way around here and finding out more about how people are living with this kind of cancer, what works and what doesn't as far as treatment, and anything else that might help me better deal with this strange (to me) disease.
Thanks for having this area for us to come to. I'm anxious to see what I can find here, as well as how I can contribute...