Hello everyone! I am a new member to this forum but have been reading for about a month. I'm interested in everyone's stories and find I can't stay away. I don't have any pressing questions except I'm not sure what to do about my treatment.
I've had 8 FOLFOX treatments and think I handled them pretty well with the exception of my 7th treatment, which hit me hard. I had horrible fatigue and longer lasting nausea. The neuropathy is manageable.
Here's my story and question(s). I was diagnosed in Oct 2016 with stage IV colon cancer with mets to liver. I am not a candidate for surgery because of the number of mets to my liver. My ONC wanted to start chemo as soon as possible. My CEA at diagnosis was 2256 (which scares me to think about when I read what some people on here had). After 4 treatments, I had PET scan. It showed near complete activity from liver, small activity from tumor in colon. My tumor in my colon went from 3cm to less than 1.5cm. The main liver tumor went from 4.5cm to less than 1cm. I also have a small tumor in my left breast that is a different cancer and we aren't specifically treating it. It's 1cm. My CEA went from 2256 down to 172.1. I am extremely happy with the results!!!
Now, I think I'm overthinking everything. I want to feel right all of the time. Not just on the 4-5 days I don't have chemo brain or the fogginess that goes with it. As I mentioned, I've had 8 treatments and I'm trying to get to 12. My goal is 10 because I will have another PET scan after 10 and get results before 11. If I have good results, I want to stop the OXY in the FOLFOX but I don't know if I should.
My questions:
Is there enough percentage of continuing treatment for 2 more to be beneficial?
Am I normal that I only have 4-5 days between treatments not be foggy? When I first started, I was down for days 3-5 after having my pump taken off. Now, I'm down with nausea but the fogginess lasts until the next week, usually 7-9 days. I'm trying to work on my good days but find the fogginess is a real negative to trying to work. I have been working because I have to but it's hard!
I hope all of this makes sense. I've never posted before but feel like this is a very open, supportive group and I'm just looking for some people who understand what I'm going thru. My parents, who are extremely supportive, have told me it's all my decision and to do what I think is right. I want to do what is right and don't want to make a wrong decision with my life.
I'm 48 and have 2 adult children. My daughter lives with me and could be considered a care giver. My parents live 500 miles away but travel to come stay with us when I have treatments and need extra help. My son lives in another state but is very much aware of what is happening.
Thank you to all who read and respond!