Topic: Where to go from here?
Hope everyone is having a Happy 4th or for our Canadian friends, hope you had a good one as well. My mom has been posting for me in recent weeks as I have not been well enough. She has been a big help through all this, a great caregiver.
I have been out of the hospital for about a month now. I was emitted for nausea/vomiting, lost 10 or 15 lbs. Since then, I have had a g-tube inserted to help deal with nausea/vomiting of which has helped to steadily improve my appetite and nausea. I am also on TPN, cycling 12 hrs at night.
I met with Dr. Javle in Houston close to two months ago to discuss other treatment options. I had been on Gem/Oxaliplatin with good success for 8 months and then suddenly my tumor markers started to increase again. He suggested Gem and 5fu of which I have had 2 treatments thus far. My CA 19-9 was drawn last week which increased from 21,000 to 71,000. I am confused by the sudden increase. My appetite has been steadily improving and I have been trying to stay active on days when I feel good. Has anyone ever experienced such? I know the rapid increase could be indicative of tumor growth. My cancer is primarily located in the omentum/peritoneum area.
I know they will want to change up chemos again, but I'm just so discouraged from this recent news.
I am scheduled for scans next week.
I am ineligible for any trials Mayo Jacksonville has because of my liver transplant and am not a candidate for radiation or surgery because of the location and sensitivity of the tumor, so that leaves systemic chemo, what a lot of us are going through.
I get frustrated very easily, I am on the younger end of the spectrum, 25. Others on this site can relate, especially I think Tiffany and Lauren. In part I'm reaching out to you because of our youth. There are days where I think I know how to approach this, positive attitude, try and maintain good outlook. When I received the news yesterday, it devastated me. New treatment plan was in place, feel good physically (on non chemo days). Frustration then leads to worry which just makes me wanna cry and scream sometimes. My head gets warped into inevitable questions. Things I don't want to think about. And patients say live each day as it is, a day, which is very hard to do.
So that is my update. Anyone with successful changes in chemo, after one stopped working, please feel free to share your experience with me. It would mean a lot on this blessed 4th.
Thank you kindly,