Today is June 17, 2009, time for another long overdue update. The primary objective for our last trip to New York (the week of May 25) was for my latest set of scans. If you will remember from the previous scans (April 13), the results were inconclusive, showing a few areas of “thickening” and also a 1cm spot in my abdomen. I was told this was area for concern but not alarm and the next set of scans should clarify the results.
Fast forward to the May 27th set of scans. The results really were exactly what we were hoping for. The areas of “thickening” were still present, but unchanged in size and location. This reinforces the idea that these areas are just scar tissue left over from surgery and may never go away. The 1cm spot that had caused all of the concern on the last scan was completely gone. For all practical purposes, “Clean Scans!”
The next big step in treatment for me is an upcoming clinical trial in New York called 8h9. It is a phase one clinical trial that is still in the approval stages, but years of research shows lots of promise as a wonderful treatment for my cancer. Because it is a Stage 1 trial and still under development, most of the details regarding the treatment are still under tight wraps. What I have been told is that it “should” be available by the end of summer and treatment will last approximately 3 to 4 weeks. Dr. Chou has convinced me to stay on my current regimen of chemotherapy until the trial is available. After the trial, assuming things go as planned, I would be finished with formal treatment. At that point I plan to start the NeoPlas alternative treatment regimen that would hopefully allow me to return to a normal lifestyle.
As you can imagine, I have had a lot of questions lately regarding my treatment choices. Understandably so, and I am not sure I understand them enough myself to explain, but I will try to do so without getting too technical. Most cancers have what are referred to as tumor markers. This means that with relatively simple tests (blood tests, etc), the amount of cancer activity in the body can be monitored. Unfortunately, I was blessed with a cancer for which no tumor maker has yet been discovered. What this means is that I will never know if all of the cancer in my body is gone. My tumors can only be seen when they become large enough to show up on a CT scan and/or PET scan. Of course, at this point they are already millions, if not billions, of cells. My cancer has also proven that it can double its tumor size in as little as three weeks, growing exponentially.
In short, because I will never be able to prove that I don’t have any remaining cancer cells, I will never be considered to be in “remission”. The term that is used for my cancer is N.E.D., or No Evidence of Disease. All of this combines to make future treatment options very difficult to decide upon, but the general consensus seems to be to take treatment as long as you can tolerate it. I’m almost to that point.
As far as the rest of the update, the last trip to New York was relatively uneventful. The scans were preformed on Wednesday, May 27th. The results came in for the CT scan on Thursday and PET results on Friday. We left New York on Thursday with a slight detour. We headed for Toledo, OH for a visit with Marissa’s grandmother. She had been admitted to the hospital with pneumonia, but is now doing much better. We arrived back in Knoxville late Saturday evening to pick up our dogs.
We learned on Friday that there is a national oncology conference held annually at this time of year, despite my scheduled chemotherapy during the conference. I was told that I had no choice but to delay the schedule and start my next round on Monday, June 8th.
Since my side effects from the previous rounds were relatively mild and controlled, there wasn’t much to discuss with the doctor. I was still having some nosebleeds, so the Avastin was reduced an additional 25%, for a total of 50% dose. I have also been having frequent headaches, so I had an MRI to check for internal bleeding. That test was performed on June 3rd and only a sinus infection showed up on the scan. Also, I had developed a painful rash on the trip back from New York. My first chance to see the doctor about it was June 2nd, about 5 days after I noticed the rash. She diagnosed it at a glance as shingles. Fortunately, they were not as painful for me as I had been lead to believe and have since all but disappeared.
Since then it’s just been back to the same old chemo routine. Last week I had a surprising amount of nausea, but nothing I haven’t been through before. Overall, things really couldn’t be better, considering… Every doctor’s report is better than the previous report. Thanks again for your continued prayers and well wishes. I would not be where I am without them. The next set of scans is tentatively set for the week of July 13th in New York.
