In early July I was DX with Appendicitis and received emergency appendectomy. Pathology revealed T3 intermediate to high grade grade cancer, perennial invasion, and lymphatic invasion. CT scans were negative and R hemicolectomy was negative. My stage now is 2A. My oncologist uses colon cancer as the model for standard of care since there are so much data for it but very little for cancer of the appendix.
He said the standard of care for my stage is adjuvant chemo with either Folfox for 6 months or Xelox for 3 months. He does not recommend Xelox for anyone as he said it is a beast and side effects are generally terrible. In fact he said if I wanted it I would need to have someone else administer it. Subsequently he changed his mind and said he would treat me with it but advised against it. I asked him if he would opt for the chemo if he were in my shoes. He said no. Not enough gain for the pain. He believes I have 15-20% chance of recurrence without chemo and maybe 3-5% less after chemo.
I talked about it with my wife, pastor, primary care doctor, and several longtime friends. They all said no. The cancer surgeon who removed the appendix said he would simply because he wanted to do everything he could to lessen his chances of recurrences. If he still had recurrence he could at least say he tried. He did point out that his wife would not do it.
The Xelox appealed to me initially because it was half the time and infusion took 2 hours rather than 4 for Folfox, and no pump for 48 hours each 2 week period. So 4 trips in for infusions, followed by oral for 8 weeks, 4 weeks off. Then I learned that the oral component is not paid by Medicare or my Medicare supplement and could cost thousands of dollars out of pocket.
I began to reconsider Folfox and found several studies that found that 3 months of Folfox was just as effective as 6 months of Folfox but with half of the side effects. I will take these studies to my oncologist and see what he thinks and ask him if will do the 3 months if I sign a waiver. It generally takes a long time to change a standard of care.
I’m be 74 next month, retired, good health, exercise every day, not over weight, non-smoker, no diabetes, no cardiovascular issues. My wife and I walk together 4 miles every day, lift weights 3 times a week, and travel frequently. Friends who vote no to adjuvant chemo say all these activities will be put on hold and I may never regain my stamina or good health. They believe quality of life is more important than maybe getting 3-5% reduced risk of recurrence.
I suppose if I have questions, it is these: How bad is the 3 months of Folfox likely to be? Will I lose my hair and be sick and tired every day? What are the odds of getting permanent neuropathy?