Cea Plateau

krystiesq Member Posts: 240 Member
edited March 2014 in Colorectal Cancer #1
All the cea questions make me wonder whether to even pay attention to the CEA level. It is my understanding it is a tumor marker, however some people don't trust them. My mother's went from 189 post surgery to now it fluctuates between 8 and 10. Her onc said it has hit a plateau and her disease is stable. He hopes that she can continue on her path with folfox & avastin forever. She is discouraged because she doesn't want to be on chemo forever. He explained her disease like diabetes, there is no cure but so long as there is medication available that is working to keep her disease at bay he will give it to her. As a caretaker I am struggling with giving her the encouragement that she needs to know that this isn't bad news. Some people live with a stable disease for 15 years. Does anyone have any advice as to how to approach the issue of living with the knowledge that you may be on chemotherapy for the rest of your life? I'm all ears.


  • apache4
    apache4 Member Posts: 272 Member
    Hi! I have been doing that for two years and am probably close to your Mom's age. I am 64. It is not the best news (it truly is bad news) and it can get a bit overwhelming and tiring at times, but it is manageable and very like the diabetes situation. I am stable now on my third regimen which is Irinotecan and Erbitux and comfortable with that. My original CEA at dx. was over 300 and now it remains stable around 21. When it went up to 34 on my second regimen, that is when they changed it. Also, I had tumor growth on the CT scan at that time. The only surgery I have had is the resection of the colon at the beginning and the cancer has stayed in my liver for two years. Realisticaly, it could pop up somewhere else, but I try hard not to worry about that. My children and their spouses are very supportive of all my decisions and trust me to make good ones. I already have my DNR in place and they know I want in home hospice when that time comes. I have four cats and three dogs and also know where they will be placed. It may be many years down the road, but I think taking care of things offers another kind of peace of mind. Acceptance has been my best friend with this dx. and just to be happy to spend another day with loved ones and doing what I like. I do live alone and am happy that I can manage the house, yard and pets even though it is a bit slower then before. I also treat myself to massages. Life can still be great!
  • cjf2006
    cjf2006 Member Posts: 83
    I am stage 4 with innumerable mets in liver and lungs. I am in the same situation as your mom and apache4 except that my CEA is high. I just got back from a trip to see family and to "stop and smell the roses". It was great. It gives me a zeal for living and for making the most out of "now". I try not to focus on the cancer, although, when Tony Snow died, I got a little nervous. I'm 52. He was 53. I am starting to think about what I want to leave behind when I am gone. Like apache4, I have accepted the inevitable, but I am plugging away at living and doing things that give me satisfaction, such as building relationships, taking in the good things in this world, crocheting and doing needlework, and taking care of myself without stressing over it. Who knows... maybe destressing, focusing on pleasant things, giving love and encouragement to others, and leaving it in God's hands may be the best "medicine" yet.

    One concern I would have is being on folfox forever. Does the dr really mean that or just chemo in general? The oxaliplatin part of that regimen is bad on the nervous system and causes nerve damage, ie the peripheral neuropathy, such as I have. I thought one could only get 12 treatments of that. I have been told I will be on chemo for as long it is effective. I am on folfiri - 5fu with leucavorin and irinotecan plus Avastin. Erbitux may be next on the agenda. My dr does give me breaks though, knowing that chemo is bad on the rest of the body. So it is a balancing act.