My local oncologist, Dr. Shapiro, retired. Switching to another oncologist, I realized once again how complicated my treatment history is. The new doctor will flip through my massive chart, but she wasn't there. And I have come to realize over the years just how important a good understanding of the treatment history is critical for a doctor to evaluate new potential treatment options (one key example). A couple summary paragraphs that keep getting re-edited on previous medical notes do not do justice. Knowing my new doctor would have to piece together my past from a big pile of far-from-comprehensive medical notes, I drew up my own birds-eye chart, One Guy's Colon Cancer Treatment Path, which is my cancer treatment history in Microsoft Project format. She actually appreciated it and it made our initial "tell me your history" appointment more profitable.
I am making this available for fellow colon cancer survivors so they might know a little of what to expect or have at least some other reference for which to compare. Every person's path is different, but seeing someone else's might be of some help. For the rest of you - my support team - you might appreciate from it just how far we've come. A good time to reflect and give thanks.
An update of the post, "medical summary"
I am maintaining this particular post, continuing to update it as needed. It contains the dry stuff - the latest high level medical overview of my situation. You can access it via the "Facts & Backgrounds" section of the home page.
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I have stage IV colon cancer, which means that there is a primary tumor in the colon and it has spread via the bloodstream to another place. In my case, at the time of diagnosis, there was a very large tumor on my liver. In addition, there was possible cancerous activity in the local lymph nodes and two small places in the lungs. Neither of these latter two problems were certain (although later proved to be cancer and were removed).
What I've done so far:
(1) To start things off (June 2003), I had almost three rounds of chemo. Each round consists of a 21 day cycle of chemo. Day one, I take intravenous CPT-11 (ironotecan). Days 1-14, I take Xeloda, the oral form of 5-FU, in the morning and in the evening. These three rounds shrunk the liver tumor almost 50% and made the lung spots go away. This was very encouraging, as this chemo is effective in only 50% of colon cancer patients.
(2) The third round was aborted due to colon obstruction at the tumor site. I spent a week in the hospital in Dallas before it opened just enough to get by for a few weeks.
(3) Then I had surgery to remove the primary tumor. Dr. Rogriguez, surgeon at MD Anderson Cancer Center (MDACC) performed the helicolectomy, a removal of the half of the colon containing the tumor. In addition, he removed the surrounding lymph nodes, a few of which turned out to be cancerous. While I was opened up, he also looked around for cancer that had not shown up on the radiology tests. He found no other visible cancer. The removed tumor was analyzed and found to be only 20% viable due to the effectiveness of the chemo.
(4) After recovering from surgery, I began chemo again. One day shy of having completed two more rounds of chemo, I developed clostridium difficile bacteria in my bowels. This was treated during a three-day stay at a local Richardson hopsital.
(5) After complications due to the onset of c-diff bacteria, I was delayed a few weeks. Dr. Hoff decided it was about time to do another round of radiology tests and we received the results on Dec 8. To everyone's surprise the tumor had shrunk remarkably and it was determined the next week by the surgeon, Dr Vauthey, that I was ready for surgical resection. MD Anderson's approach to liver resection for colon cancer is described in the article.
(6) The surgery was performed on Dec 22 and I spent Christmas in the hospital. I had quite a group with me during this time. According to the surgeon, it went "perfectly": the tumor was removed in one piece (all the right lobe and part of the left), there was no need to remove any of the diaphragm, and most importantly, there was no cancer found beyond that which was taken out. Christmas, it seems, came anyway. The recovery is rough, as I had 76% of my liver removed. But I am steadily regaining strength as it regenerates.
(7) Having gone through surgical removal of the liver tumor, more chemo (possibly with a different drug) was necessary for good measure to assure ourselves that all remnants of the cancer are gone. I completed this round in spring of 2004.
(8) At the end of spring, they noticed a small nodule in the pelvic region. They tried to biopsy it via a colonoscopy, and the samples taken were negative for cancer. Three months later, it showed growth, so they did an external biopsy, which proved positive for cancer. They also noticed that this nodule may have been on the original scans back in 2003. I think it was there all along.
(9) They decided to do a different type of chemo, which is now the frontline approach (it wasn't FDA approved when I began all my treatments). This protocol is called FOLFOX with Avastin. After several rounds of this, the nodule shrunk, so they were willing to go after it with surgery.
(10) In February of 2005, I had major surgery to get this nodule taken out. They sucessfully got it, and saw no remaining cancer anywhere in my belly when they were in there. The surgery was miraculous in that the side effects were relatively few, even though many bad side effects were quite possible and even expected - including removal of my bladder or rectum. None of that was necessary!
(11) There was a very small (less than 1mm) margin of non-cancerous tissue around the edge of the the removed blob of tissue. This means a good chance there are still microscopic cancer cells left. So they decided to do 4 rounds of chemo (FOLFOX-Avastin), then radiation, then a final 4 rounds of chemo.
(12) The radiation was completed July 5, 2005. I did the radiation in Houston at MD Anderson.
(13) After radiation, they wanted to do some more chemo for good measure. So I did four rounds of FOLFOX-Avastin, finishing in September 2005.
(14) In October 2005, the CT scans were clear(!)
(15) Jan 2006 I had my first 3-month checkup, which inluded a full torso CT scan. There were a couple of spots that showed up on the scan on my lungs. These had been there before but had disappeared (with chemo?). They were too small to know what they were. Dr Hoff suggested that I return in 8 weeks for another scan of the lungs.
(16) March 23,2006 a couple days after the scan I met with my new oncologist, Dr. Cathy Eng (Dr. Hoff moved back to Brazil, his home country). Unfortunately, the scans showed significant growth of the spots and several others as well. The largest is 11mm, just big enough to biopsy. So we are scheduling a biopsy - probably around April 17.
(17) April 7, 2006. The biopsy was positive for cancer. Details here. I am now taking a four rounds of irinotecan + intravenous 5fu, fourteen days per round. The story behind this protocol decision is here. The hope is to shrink and kill. I'm hoping surgery will become an option to remove the lung mets.
(18) May 22, 2006. Due to low white blood cell count and intestinal pain, probably from the chemo iritating them, my doctor postponed round three of chemo for one week.
(19) Nov 11, 2006. I finished my last round of chemotherapy. All these years of chemo is really beating me down. I requested a consult with a lung surgeon. To my surprise, he told me I was a good candidate for surgery. (details) Lung surgery to remove the mets in my left lung is scheduled for Jan 5, 2006.
(20) Jan 5, 2007. Successful lung surgery, left lung. I had thoracotomy with two wedge resections to take out two mets in my left lung. The surgeon expects to do a similar operation on my right lung in a couple months. You can follow my surgery by looking at blog entries from January 2007.
(21) March 23, 2007. Successful lung surgery, right lung. I had another thoracotomy, this time with four wedge resections to take out mets. Surgery details are in blog entries from March 2007.
(22) April 19, 2007. Met with my surgeon, and my clinical oncologist, Dr. Eng, at MD Anderson. No evidence of disease, no treatment planned. Return July 24 for CT scans. This feels like the first remission, although it actually is the third. The first was tentative where there was something on the CT scan, but the biopsy was negative for cancer, but was done "blindly". The second remission was with the knowledge that there were (likely) lung mets that had shrunk to not be visible on scans. This time - no trouble spots.
All of this is done under the care of a team of doctors at MD Anderson Cancer Center (MDACC) in Houston, TX.
Greg and Christine's mailing address is 4409 Taylor Lane, Richardson, TX 75082.
I received some very bad news this week. It came in waves. My doctor, Dr. Oeffinger, who I hope to tell you more about, set me up with a GI doctor to do a series of tests to determine the source of bleeding “somewhere between my nose and my rear.” I had low blood counts indicating loss of blood somewhere. Thursday, I had a colonoscopy and a esophagogastroduodectoscopy (a new word I learned this week!) to investigate. It turned out to be a relatively easy procedure and there was no pain involved. The process was simply to put me to sleep then insert a probe into my digestive tract from both ends to look around. We were expecting to find a polyp or two in the colon, as this is a genetic condition and has occurred in my father and his brother. The doctor would remove it and that would be the end of this episode.
We did find a few polyps, but also a horrible looking mass that is cancerous. It is in the part of the colon just next to the liver. My mother, who was with us, and Christine found out first, as I was still in recovery from the anesthesia. Mom and Christine listened quietly as the doctor told me when I woke up. The rest of the day, Christine and I were shocked. But surprisingly (at least to me) we were really taking it in stride. After all, there was a good possibility that it could be removed with no necessary follow-up chemotherapy. This was the exact path my uncle had taken several years ago.
Incidentally, as far as anyone knows, this cancer has absolutely no relation to the bone cancer I had in 1982-1985. The only relation is that we discovered the low blood counts during my yearly check-up, which I have been somewhat faithfully having since the first fight with cancer.
The next day (Friday) we visited the surgeon. The surgery to remove the tumor is quite major. He told me to expect not to work or drive for four weeks. The reason is that they must go through the stomach muscles, which are used in just about every physical activity. After visiting the surgeon and beginning the process of preparing emotionally for the four week ordeal, I had a CT Scan.
We returned to Dr. Oeffinger’s office, not really expecting to hear anything new. We had completed a full day of tests, thought everything was under control, and were ready to call it a day. The short visit turned out to be a major visit. Dr Oeffinger told us the crushing news. The CT revealed that the cancer was not localized in the colon but had spread to “many places” on the liver. This moved the cancer from what he thought was a level B to “at least” level C, and possibly D. I’m not that familiar with the scale. Perhaps some of you are. I only know that all cancers are categorized as A,B,C, or D, depending upon their aggressiveness and the amount they have invaded other parts of the body.
He was realistic in communicating that my prognosis is not good. But he does not consider the situation even near hopeless. We’re going to get that mass out of there, then turn our attention to the liver. One day at a time, one obstacle at a time. The lesions on the liver can be treated, and some patients see success, especially in recent years. He told me I had four strong things going for me – my youth (I’m 35), my health, my personal support network, and the power of prayer. The last two are the reasons I ask you to join me in this fight.