I had my appointment yesterday morning to get the results of my CT scan. It was confirmed that the cancer has progressed. I am devastated yet again as one would be.
I was really hoping for a stable scan so that I could pursue a consult with a HIPEC surgeon. I should’ve done it sooner. I guess it still wouldn’t hurt to try though, so If anyone has any recommendations on who would be an experienced HIPEC surgeon, I’m all ears. I am willing to travel within the United States.
In a sense I really do not have measurable disease – there are no specific tumors that they can measure, but there are tumors on my peritoneal lining, and my right ovary – I actually have pictures of those from when my OBGYN had done a laparoscopy when I was diagnosed. My oncologist describes my cancer as a more fluid cancer because of the large amount of ascites that I have. My insides are stewing in what I like to call “cancer juice.” This results in thickening of my peritoneal lining and the pleural lining of my left lung and they are seeing increased thickening of these areas on my scans. Also when they look at my liver – there is what I can only describe as a ring within my liver where there appears to be two different densities. Again this is caused from the stewing in the “cancer juice.”
When I had my consult at Mayo, they were able to find a 4mm tumor in the mid transverse colon, yet all of the scans I have had locally do not mention this tumor.
My oncologist did speak with the oncologist that I saw at Mayo to come up with a new game plan. So as of this moment, going forward my treatment plan is to start on Erbitux next week. Then after seeing how I respond few infusions, I will be then admitted to the ICU to add Irinotecan for future infusions. The reason for this is to be closely monitored if I were to have another allergic reaction to it.
When I started chemo I was supposed to receive FOLFIRINOX, but when they ran the Irinotecan my tongue swelled up. They stopped the infusion, gave me Benedryl, and continued the infusion. My tongue swelled again, so then they completely stopped the Irinotecan, and the rest of my infusions I just received FOLFOX.
I’m NOT looking forward to the side effects that are sure to come. I’m also not looking forward to having to quit my job either, but at this point, I’d rather quit than get fired.
Best wishes to everyone!