Lena, yeah, you get it. I'm trying to keep most of my anxieties to myself. I don't want DH to have to talk about cancer constantly.
Melissa, all I can say is that it sounds like you've had a crazy week. I think there might be something to the measurement comment. It does seem odd that everything increased in size by the same amount. You'd think there would be some randomness in a biological system, right? I'm hoping that you find out this is proof positive of stability or better.
Sarah, I hope you get to MSK soon.
Ok, so we went to Wake Forrest for a second opinion. It was a complete disaster. DH didn't want to go in the first place but I talked him into it. I told him I was positive I was right about this and Wake Forrest was where he needed to be. Well, I have been punished for my hubris.
The surgeon probably spent less than 20 minutes with us. The sum total of his wisdom was surgery will not help DH, DH has 22 months to live, and the PET scans we've had probably don't give the full picture because they only look at the surface of the liver and can't see into the liver. That means their are probably lots of tumors in his liver that will spread to his lungs soon. Now, I'm no radiologist, but I thought a CT could see into solid organs. (DH has had both CT and PET scans). I did some research (because that's what I do) and found that CT scans are very good at picking up small lesions in solid organs, but they are not good differentiating between what is malignant and what is benign.
DH got a CT when this all started. I faxed those results to Wake Forrest. DH has had two PET scans at Moffit, which Moffit scanned and sent to Wake Forrest. So I see two possibilities. The Wake Forrest surgeon is right and we have not had the appropriate scans, or, he only looked at the information from Moffit and not any of the information I sent. I'm going with that second one. In denial? Maybe, but I don't see any evidence that DH has multiple tumors inside the liver. He appears to be down to one liver tumor on the surface. The Moffitt surgeon thinks so.
So, no HIPEC, or anything else at Wake Forrest. Maybe no HIPEC at all. The Wake Forrest surgeon was sure to share how difficult the surgery was, how long the recovery was, and the morbidity and mortality risk. I suppose that is his job. DH is now thoroughly terrified of HIPEC.
The bright spot in all of this was Wake Forrest Doc thinks the current course of chemo is the way to go. Agreement on this one issue is probably a good thing.
Oh, and after we left Wake Forrest, I apologized to DH for dragging him up to North Carolina and wasting two days of his time. His response can be paraphrased as follows: "This wasn't a waste of time. We did what you thought was best and now we have more information. We have more questions to ask at Moffitt." Yeah, he's awesome.
Wife to DH with CRC
Stage IV Diagnosis 1/27/17, Mets to Liver, Omentum, Peri
KRAS Mutation, G12, MSS
Nov. scan - disease progression
1/24/18 15-hour HIPEC surgery.
June 2018 It's back, starting Stivarga
Aug. 2018 stopping Stivarga
Sep. 2018 clinical trial of Keytruda and ibrutanib
Dec. 2018 disease progression, stopped trial
Jan. 2019 small bowel obstruction and surgery
Mar. 2019 clinical trial TAK-164
May 2019 deteriorating rapidly