After my scan in February it was determined that Keytruda was no longer working for me. Going forward my onc wanted to put me on Erbitux, and then add Irinotecan after a few rounds of Erbitux.
At my last chemo appointment I had told my onc that I didn't feel like this chemo cocktail was working. Mainly because my abdomen just kept getting harder and harder after each infusion. When I was on Keytruda, my abdomen had gotten a lot softer and it was actually a bit "squishy." Now it is rock hard and my belly button is almost ready to turn itself inside out. I had also told her that I was planning on setting up a surgical consult. I called for the consult last Tuesday, and had the appointment this past Monday afternoon.
After 6 rounds of Erbitux and 4 rounds of Irinotecan, I had a scan this past Monday morning. The results were what I expected: there was disease progression.
My onc had contacted Mayo in regards of what to do next, and they basically said the next step to try would be Lonsurf or Stivarga. So, she is requesting insurance approval for Lonsurf, she feels the side effects are less severe and the efficacy is similar to Stivarga . They also said they had a phase 1 clinical trial that I may qualify for, but she seemed a bit hesitant to go that route because it's only phase 1, and I would have to travel to Mayo every 2 weeks which is about an 8 hour drive for me.
The appointment with the surgeon went a bit different. The surgeon I chose has a special interest in peritoneal disease, and he does do HIPEC. I did bring him a copy of my scan from Monday morning, and all my records were sent to him .
He basically said that I am not a candidate for HIPEC because there is too much going on in my abdomen, but he would like to do an exploratory laparoscopy to get a better look at what is actually going on in there, and there is the possibility that he can drain the ascites from my abdomen. Obviously he will be doing biopsies of the tumors he finds in there as well. I got the impression that he wants to re-run the different tests on the tumors. All of the testing that has been done up to this point has come from the tumor within my colon, but right now there is nothing left from my colon tumor to test anymore. They had to use pleural fluid to test for the BRAF mutation.
He did say that he has had other patients like me (Lynch positive, and MSI-H) who have also failed conventional treatment along with immunotherapy. He mentioned something about a using a chemo drug (one that isn't used for colon cancer) and a different immunotherapy drug that has worked on others like me. He mentioned that if I receive this cocktail and my tumors shrink or whatever that debulking may be possible in the future - basically if the conditions are ideal and I'm still alive.
He did say he was going to go to the tumor board with my case. As much as I want my abdomen drained just to relieve all this pressure - I became a bit apprehensive once he told me there is a possibility that the surgical incision may not heal and I could end up with a drain and a bag for it. He also mentioned that the fluid/mucus has quite an unpleasant smell.
I also showed him a photo on my phone of the photos that were taken of some of the tumors on the perinoteal lining and my ovary from when I was dx'd, and he mentioned to the resident that came in the room with him that poorly differentiated signet ring cell adenocarcinoma is usually fibrous and he really wasn't seeing evidence of that in the photo I showed him. Not sure if that is a good or bad thing.
I did relay all this information to my onc, and the surgeon had said he was going to follow up with her. I did ask her today to please get any and all information from him as she could, because I'm a bit fuzzy on what his intentions/and or goals are. I'm hoping that once my onc speaks with him I can get a clearer picture. My onc also wants me to make an appointment to see another onc where the surgeon is located to see if they have any other opinions or any clinical trials they are doing there that I may qualify for, so I will have to try to contact them tomorrow.
I tried to understand most of what the surgeon was saying, but going to the doctor with my husband is a bit challenging. It's almost like my husband acts like I'm a small child and he is the parent explaining my symptoms and events to the doctor. I love him dearly, and I know he's just trying to help and to understand everything himself, but he will talk over me and his recollection of events are not always in line with what has happened. It's like playing a game of telephone with 30 people, where what the first person stated is not what the 30th person heard. He also doesn't have the greatest understanding or knowledge of the importance of certain tests/procedures etc. if you get what I mean.
I know I'm not 100% out of options, but I feel like it's getting close to that, and I really wish that wasn't the case. And is it weird that I wasn't anywhere as devastated today when I heard the news that chemo failed as I was when I found out that the Keytruda failed? I could barely stop crying last time, and this time I have not shed any tears.
Best wishes to everyone!