rdujay wrote:After receiving so much helpful information from this forum, this is my first post. I haven’t posted until now because I didn’t think that I could offer any new information or insights, but having just achieved a clinical complete response (“CCR”) to stage 3 rectal cancer, I wanted to share my journey in case someone else is in a similar situation.
Symptoms and Diagnosis: I had been having some blood in my stool for a while—like a long time…years. I didn’t think it could be cancer because literally no one in my family has ever had any type of cancer. Then a year before my colonoscopy, each time I would use the toilet it looked like a Game of Thrones episode had taken place (lots of blood) so I finally went in to get scoped. They discovered a 3cm mass approximately 10cm up from the anal verge (“AV”).
Treatment Plan: I live near Durham NC, so I made an appointment with Duke Cancer center, which is a nationally rated (#32?) cancer center. The first appointment was typical where I met with a surgical oncologist, a medical oncologist and a radiation oncologist all in one day. Their plan was to do Total Neoadjuvant Treatment, which just means six rounds of Chemo (Xeloda and Oxaliplatin), followed by chemoradiation, rest period of 6 weeks, followed by surgery. I want to stress that this was their plan—not mine. Thanks to this forum, I was very interested in W&W, yet when I brought this up with the surgeon, he was very dismissive. It was at that moment when I knew that I had to be ultimately responsible for my own outcome, and that if I needed surgery, this guy would not be doing it.
Chemo: six rounds of Xeloda (2,000 2x per day) and six infusions Oxaliplatin. As everyone has noted, the infusions sucked. They made me extremely nauseous and tired for 3-4 days after each one, and I couldn’t work for those days. For each subsequent infusion, my doctor cut my dose back to avoid neuropathy. It's been said on this forum before, but Oxaliplatin is the most toxic and least effective of the two chemo drugs, so don’t feel bad cutting the dosage. During the first few days of being on the Xeloda, I started to get heart attack symptoms. Great. To make a long story short, a small percentage of people can have a cardiac reaction (spasms around the heart) to Xeloda that mimic heart attack symptoms, which can be solved with blood pressure medication. The result of this was that my first two round of Xeloda were either cut short or reduced in strength, and for rounds 3-6 the dosage was reduced from 2,000 twice a day to 1,500 twice a day.
2nd Opinion: I had been doing a lot of research on W&W, and wanted to meet with a doctor who understood W&W to discuss. I wasn’t sure whether I would have a complete response, but I wanted to talk to someone before I started radiation. I went up to Memorial Sloan Kettering (“MSK”) in New York and met with one of the surgeons there. While I was there, he gave a me sigmoidoscopy, and I was shocked—after chemo alone the tumor was tough to find. It was now just a small red bump. Looks like chemo had worked. Before my appointment, I thought that if I was lucky enough to have a CCR, I would be the perfect candidate for W&W. To my surprise, the MSK doctor said that W&W “wasn’t designed for me.” He said that it was designed for people who are older, or with a lower tumor where a permanent bag could be a possibility. His recommendation was to skip radiation and head to surgery. I didn’t like that option, so I asked whether he would be comfortable putting me on W&W if I had a CCR after radiation. He said that he understood my concerns, and although it wouldn’t be his first choice, he would be comfortable with W&W. I was to come back after chemoradiation to learn my fate.
Chemoradiation: Prior to starting, I read a study showing that CCR rates were increased as the radiation dosage was increased. The “standard” dosage for long course (28 sessions?) radiation is 50 grays. CCR rates started to increase sharply at 54 grays, so I spoke with my radiation oncologist about increasing the dosage to 54 grays. In addition, I wanted to get Intensity-modulated radiation therapy (“IMRT”) as opposed to the standard type of radiation. The only difference with IMRT is that patients tend to have fewer side effects as it spares more healthy tissue. CCR rates are slightly lower with IMRT, but I still requested it. Doctor said ok to both—54 grays of IMRT. So I did my 28 or so sessions---not a single side effect. Not one. I was ready for all sorts of fun, but got nothing. While on radiation, I was back on my full dose of Xeloda of 1,500mg 2x per day. During the last week of radiation, my bloodwork had come back and CEA had dropped from a high of 3.8 to 0.5—a good sign.
Waiting period: I had been very clear with my doctors at Duke from day 1 that my goal was a CCR because I wanted to avoid surgery. So it wasn’t much of a surprise to them when I said that I would be heading up to MSK for my surgical consultation. This would be a pass/fail test where I either would have a CCR and W&W, or I would not have a CCR and thus get surgery. One change I made to my treatment that I think is REALLY important is the waiting period between the end radiation and meeting with a surgeon. Radiation takes time to work and 6-8 weeks isn’t a lot of time. Every study I could find shows that the longer people wait after radiation (up to 14 weeks) the better chance of a CCR. I waited 12 weeks between my radiation ending and going back up to MSK to get scoped, but I would have been happy with 10.
Judgment Day: As you can probably imagine, I was anxious as hell on the day of my MSK appointment. Would I have a CCR? I kept telling myself that the odds were not in my favor, so I was ready for surgery. But after the scope, the doctor said that he didn’t see anything that he was worried about on the scope, or MRI. My CEA had increased to 0.7, but still really low. He said that I’m good for now and that I would be coming back in 4 months.
That is my journey thus far. To me, the most important changes I made were to the radiation—getting IMRT, 54 grays, and the waiting period afterward. My biggest recommendations would be to increase the waiting period after radiation to at least 10 weeks and also get the total neoadjuvant treatment (chemo up front). Finally, I want to mention two other things, which I did, but I don’t think made any difference, yet I am going to mention them. First, throughout this entire journey, I took resveratrol, a supplement. 1 gram of pure powder mixed in with full-fat Greek yogurt. Since radiation, I have also started taking 1 gram daily of the prescription medication metformin. This medicine is meant to treat diabetes (I am not diabetic), but has amazing longevity and anti-cancer properties. To be clear, not "anti-cancer" like chemo…more like a heck of a lot of broccoli.
So I’m not sure if I will be on W&W forever (re-growths happen in about 20%-30% of cases), but for now, I am happy. I hope this helps someone else that wants to avoid surgery.
This is such great news. Just be sure to keep up with all your follow ups. I was never offered Watch and Wait or new it was an option. After my chemo/radiation my surgeon did a sigmoidoscopy and all that was seen was scar tissue. I also had a pet scan that showed no evidence of disease especially in the distal rectal area. The only thing my surgeon told me was that I may not need chemo after surgery. I was excited for this. The pathology after my surgery showed clean margins, 0/24 lymph nodes but minimal residual cancer cells. Because of this it was recommended I do clean up chemo. I often wonder what would've happened if I did W&W because I know I would've done it if offered. Praying you stay cancer free forever.