Hi. It's been a while since I stopped in here. I've been in hiding ever since I revealed BigCarrot.
Unfortunately, DH is not doing well. He fought long and hard for the last 2.5 years, and I'm still hoping for a miracle. I'll try to summarize our journey.
DH was diagnosed with stage 4 colon cancer in January 2017. He is a KRAS mutant (G12D) with a mucinous adenocarcinoma. He had metastisis all over the peritoneum. We were told the best we could hope for was 2 to 3 years. He immediately started on Folfirinox and did 8 rounds. Then he switched to Folfiri and did another 12 rounds. In December 2017, the cancer was clearly growing again. After that, we found a surgeon willing to do HIPEC. He had that done in January 2018. It was a 15 hour surgery. They removed a foot of colon, the entire omentum, a piece of his liver, the peritoneal wall, lots of lymph nodes, they scraped the bladder, and took off a tumor wrapped around the hepatic vein. They removed every bit of visible cancer and we hoped for the best.
It was back in June 2017. It was back in the colon, on the liver, and now in his lungs. They started him on Stivarga, which I think the CIA could use for an enhanced interrogation technique. After two months, he couldn't stand it any more. It wasn't helping anyway. Then, he got on a clinical trial for Keytruda plus ibrutanib. It was entirely unsuccessful. I pointed out to the oncologist that we had never tried Avastin and Dr. SoulCrusher (not his name, but he is a pretty gloomy guy) agreed it was worth a shot. DH started on Folfiri plus Avastin.
That lasted until December 26, 2018. I rushed DH to the hospital with severe pain. It turned out that he had a small bowell obstruction. After a week in the hospital, it had not resolved. We were given three options: 1) Have surgery to remove the obstruction (highest risk and highest reward), 2) Live off of IV nutrition (DH immediately nixed this), 3) go home and enroll in hospice and enjoy what's left. We chose option 1 and it went well. They sorted out the obstruction and in a few weeks he was eating well as long as we stuck to soft, low fiber foods. So I made a lot of scrambled eggs.
In March, we got him on another clinical trial for TAK-164. It's a Phase I dose escalation study and he got enrolled in a newly opened arm. This means he was given the highest dose yet of anyone in the United States. He got an infusion on Tuesday and all went well. Wednesday, no problem. Thursday, no problem. We thought this is great, he is finally on treatment that isn't making him miserable. Then Friday happened with the nausea and pain. It only got worse through the weekend. By the following Tuesday he was admitted into the hospital for pain management. He came home a few days later. While he was in there, they drained a pleural effusion. It wasn't a surprise that it was there, but it had apparently gotten bigger. The pathology report indicated No Evidence of Malignancy in the removed fluid.
Last week he had his second infusion and the misery started immediately. by Monday, we were back in the hospital and that's where he is now. He is nauseous most of the time even though they are loading him up on compazine and zofran. They even tried phenergan. The pain isn't as bad this time, but he is on a fentanyl patch for general pain control.
He's not getting better and I don't know if he will this time. I'd really like to get him home one way or another, either with him feeling better, or with hospice. I don't know what the future holds. None of us do, but I can't help but feel we are nearing the end. There really hasn't been too much to his life but suffering for the past couple of months. I really want that to stop (preferably with a miraculous turn around), but I have to be realistic.
thanks for listening... er... reading,
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