Peritoneal Mets - Ascites and Cramping - Experiences?

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MCT2021
Posts: 6
Joined: Mon Mar 15, 2021 12:27 pm

Peritoneal Mets - Ascites and Cramping - Experiences?

Postby MCT2021 » Sat Apr 24, 2021 5:59 pm

Hi all,

I wrote here last month for advice on clinical trials for my brother, who is 26 and diagnosed with Stage IV signet ring cell/mucinous adenocarcinoma with fairly extensive mets to his peritoneum. Since my last post, he decided to enroll in a trial that his MDA oncologist recommended that targets the WNT pathway and has something to do with a fusion gene he has (RSPO3), although that's about where my understanding ends.

I'm writing because, in the four-week "washout" period between his last chemo treatment and the start of his immunotherapy trial last week, he developed a fairly large volume of ascites, as well as constant cramping and mucousy diarrhea. They performed a paracentesis two days ago and were able to drain 5 liters of fluid. Although that relieved his symptoms of fullness and pressure, he still hasn't been able to eat or drink much in the last few days because he's reporting major, almost continuous cramping and nausea. He's thrown up most of what he has eaten or drank in the last 48 hours. According to his last few scans, he has small lesions throughout the peritoneum but no evidence yet of bowel obstruction. The scan did say that his gallbladder is decompressed and liver is enlarged.

He thinks that this may be connected to his Lovenox because he had similar symptoms back in August the first time he was on it (he switched to Eliquis after that and had a better experience, but this trial will not let him take Eliquis). He's asked the trial team if there's any other blood thinner he can take to see if that might help, and any other meds he can take for the cramping, but it's the weekend so they haven't gotten back to him yet.

This is getting long, but I guess I am just hoping for any advice that anyone might have to get him some relief, if anyone knows why he might be cramping so much and whether this happens during build-up of ascites or after paracentesis, etc. I have read as much as I can on the forum about others with peritoneal mets and I am (maybe obviously) nervous that this doesn't have to do with Lovenox, and it's to do with his peritoneal mets. I am trying to get out to MDA to see him in the next two weeks, once my husband and I can get fully vaccinated, and am starting to get worried about timing. Thank you so much in advance for any help.
Sister to age 26 M Stage 4 (25 at dx)
08/2020: Hemicolectomy to remove SRC/mucinous adenocarcinoma in right side, Stage 3C (T4a, N2b, M0)
10/2020: FOLFOX/CAPOX
01/2021: Peri mets on liver capsule, CEA 100, FOLFIRI-BEV
03/2021: "Significant progression" of mets throughout peritoneum, CEA 900+, FOLFIRINOX-BEV
04/2021: Immunotherapy trial targeting WNT pathway/RSPO3 fusion gene. Scan showed relatively stable since 03/2021, ascites, CEA 400
05/2021: At peace; missing him always

MCT2021
Posts: 6
Joined: Mon Mar 15, 2021 12:27 pm

Re: Peritoneal Mets - Ascites and Cramping - Experiences?

Postby MCT2021 » Mon Apr 26, 2021 1:00 pm

In case this is helpful for anyone, I just wanted to give an update on what this ended up being. Late yesterday afternoon, my brother said his heartrate was elevated and was feeling really weak after several days of not eating or drinking, so he was admitted to MDA's ER. They found two narrowings of his bowel, one at his original anastomosis/surgery site at the beginning of his colon and one at his sigmoid/rectum. They did not say what the cause was, but given that his CT a few months ago showed "serosal implants involving the ileocolic anastomosis and sigmoid," it's hard to imagine any other explanation but the mets. They also noted the ascites has come back. Given the current tumor burden, they have ruled out surgery for the time being and are just waiting to see if the gastric tube will help relieve some pressure on him and some of his cramping, which has continued. His nausea has subsided now that they've inserted the gastric tube. They've got him on Dilaudid to help with the pain.

I am not sure what the next steps could realistically be, but they have floated a colostomy or G-tube tentatively and they say they need to gather his team to discuss further. We've had some trouble trying to figure out what happens with peri mets as time goes on, so just thought I would give an update for anybody out there who may be in a similar situation or looking for answers.
Sister to age 26 M Stage 4 (25 at dx)
08/2020: Hemicolectomy to remove SRC/mucinous adenocarcinoma in right side, Stage 3C (T4a, N2b, M0)
10/2020: FOLFOX/CAPOX
01/2021: Peri mets on liver capsule, CEA 100, FOLFIRI-BEV
03/2021: "Significant progression" of mets throughout peritoneum, CEA 900+, FOLFIRINOX-BEV
04/2021: Immunotherapy trial targeting WNT pathway/RSPO3 fusion gene. Scan showed relatively stable since 03/2021, ascites, CEA 400
05/2021: At peace; missing him always


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