New user. 4 months after HIPEC, spots on liver and peritoneum, please please help me

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jonah
Posts: 2
Joined: Wed Jun 20, 2018 11:27 pm

New user. 4 months after HIPEC, spots on liver and peritoneum, please please help me

Postby jonah » Thu Jun 21, 2018 12:19 am

Hi, I have trolled this site constantly for 8 months, thank you so much to the contributors. I had to buckle and register an account because today we got a bad CT and we are shattered, and I don't know where else to go.

Brief backstory: My brother and I are nextdoor neighbors, best friends, and had our first children 4 days apart in October 2016. Fast forward a year, Oct 2017, and his "Crohn's" has been rediagnosed as Stage IV CRC. During resection, surgeon finds multiple peritoneal mets and 1 resectable liver met. After 6 rds of "amazing" response to FOLFOXIRI, HIPEC was successful, onc started him on 6 rounds of FOLFOX. CT on 5/11 was NED! At literally his last scheduled appointment, his best marker, CA 19-9 jumps from 42 to 91, triggering a new CT, which shows "thickening" in liver and what's left of his peritoneum, plus ascites that have never been there before.

4 months after a complete HIPEC, 1 month after an NED CT scan and normal markers, and now we're being told things don't look good. The plan is to start FOLFIRI next Friday, as the oxali apparently didnt do what we thought it would. Onc said we could add Avastin this time. Has anyone had a similar set of circumstances? Thoughts on Avastin? Please, my family is falling apart and I really just need any advice or thoughts you can spare, this board is where Ive spent so many long nights...

Thank you in advance,
Jonah
Caretaker to 33yo brother
DX 10/17, Stage IV (1 liver met, extensive PSD)
10/17 primary tumor resection
11/17-2/18 6 rounds FOLFOXIRI
2/18 HIPEC, liver resection
4/18-6/18 6 rounds FOLFOX
5/11/18 CT scan, NED, CA 19-9 @ 37, CA 125 @ 19
6/1/18 CA 19-9 @ 42
6/15/18 CA 19-9 @ 91
6/20/18 CT shows 1 "area" on liver, "thickening" area of PSD, heavy ascites

jonah
Posts: 2
Joined: Wed Jun 20, 2018 11:27 pm

Re: New user. 4 months after HIPEC, spots on liver and peritoneum, please please help me

Postby jonah » Thu Jun 21, 2018 2:18 pm

Since my last post above--written last night--my brother's doctors discovered a partial small bowel obstruction that they did not see during yesterday's nightmare CT read. We are hoping it is scar tissue from HIPEC and not more cancer growing. Has anyone had any experience with this?
Caretaker to 33yo brother
DX 10/17, Stage IV (1 liver met, extensive PSD)
10/17 primary tumor resection
11/17-2/18 6 rounds FOLFOXIRI
2/18 HIPEC, liver resection
4/18-6/18 6 rounds FOLFOX
5/11/18 CT scan, NED, CA 19-9 @ 37, CA 125 @ 19
6/1/18 CA 19-9 @ 42
6/15/18 CA 19-9 @ 91
6/20/18 CT shows 1 "area" on liver, "thickening" area of PSD, heavy ascites

stu
Posts: 878
Joined: Sat Aug 17, 2013 5:46 pm

Re: New user. 4 months after HIPEC, spots on liver and peritoneum, please please help me

Postby stu » Thu Jun 21, 2018 4:31 pm

Hi ,
Your are all having a very rough time and as a family we know how dismantling a quick recurrence can be . Sometimes it’s more than one step to NED . He has mounted a response before and may well do again .
This happened to my mum and she responded again and had further surgery .
I have no knowledge of the bowel blockage but they do happen and will hopefully resolve ,
Take the time you need to regroup then back to treatment . I truely believe as hard as it was , the second year of chemo set my mum up and was very beneficial.
The microdisease was possibly there all along so it’s now identified and ready to be dealt with .
Take special care,
Stu
supporter to my mum who lives a great life despite a difficult diagnosis
stage4 2009 significant spread to liver
2010 colon /liver resection
chemo following recurrence
73% of liver removed
enjoying life treatment free
2016 lung resection
Oct 2017 nice clear scan . Two lung nodules disappeared
Oct 2018. Another clear scan .

violet9583
Posts: 7
Joined: Tue Feb 27, 2018 12:04 pm

Re: New user. 4 months after HIPEC, spots on liver and peritoneum, please please help me

Postby violet9583 » Fri Jun 22, 2018 10:03 am

Sorry to hear about your brother. My wife is also going through the same situation. Before you start with Chemo, check with your oncologist about the clinical trials if any of these drugs will make him ineligible for clinical trials in the future. I do recommend you to get a second opinion before starting the Chemo.

supportingsister
Posts: 14
Joined: Sun Oct 16, 2011 3:26 pm
Facebook Username: elizabeth kirkpatrick mosier

Re: New user. 4 months after HIPEC, spots on liver and peritoneum, please please help me

Postby supportingsister » Fri Jun 22, 2018 11:54 pm

Yes. About one year after my suster’s Hipec surgery, they found a “reoccurance” in her abdominal wall. Drs were dismal convinced she was doomed. Well a month before, my sister thought she signed up for a 5k, but had accidentally signed up for a half marathon. And she ran it. It wasn’t cancer. Scar tissue from a tear. So hang I. There. Might be nothing

stu
Posts: 878
Joined: Sat Aug 17, 2013 5:46 pm

Re: New user. 4 months after HIPEC, spots on liver and peritoneum, please please help me

Postby stu » Sat Jun 23, 2018 2:21 am

Well done your sister !!!
Stu
supporter to my mum who lives a great life despite a difficult diagnosis
stage4 2009 significant spread to liver
2010 colon /liver resection
chemo following recurrence
73% of liver removed
enjoying life treatment free
2016 lung resection
Oct 2017 nice clear scan . Two lung nodules disappeared
Oct 2018. Another clear scan .


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