Please positivity about peri met

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Trying
Posts: 240
Joined: Sun May 13, 2018 10:11 pm

Please positivity about peri met

Postby Trying » Sun Jan 13, 2019 10:02 pm

Im so consumed with peri met
I know chemo doesnt usually work but my dr said he saw small shrinkage in it. They arent talking hipec as they want my current inoperable liver mets taken care of first. Please please only ppsitive outcomes from chemo only. I hope some of you cam lift my spirits amd help this tear filled face.
38 yr old single mom of almost 2 year old at the time
April 2018 colon cancer stage IV 10 liver mets and peri met. Folfox and 12 rounds oxyplatin
Fec 2018 Down to 2 mets in liver. 8 dissapeared
July 2019 switched to xeloda pills as I prefer to 3 day infusion. Also on avistan
Oct 2019 emergency colostomy due to perforated bowel. ( unreal pain)
Feb 2020 show 2mm tumor increase.
Plan to go back on oxy

Trying
Posts: 240
Joined: Sun May 13, 2018 10:11 pm

Re: Please positivity about peri met

Postby Trying » Mon Jan 14, 2019 10:44 pm

Was hoping for a good respponse....
38 yr old single mom of almost 2 year old at the time
April 2018 colon cancer stage IV 10 liver mets and peri met. Folfox and 12 rounds oxyplatin
Fec 2018 Down to 2 mets in liver. 8 dissapeared
July 2019 switched to xeloda pills as I prefer to 3 day infusion. Also on avistan
Oct 2019 emergency colostomy due to perforated bowel. ( unreal pain)
Feb 2020 show 2mm tumor increase.
Plan to go back on oxy

Detox
Posts: 56
Joined: Fri Apr 28, 2017 5:27 pm

Re: Please positivity about peri met

Postby Detox » Mon Jan 14, 2019 11:22 pm

Sorry nobody has replied and I wish I could give you advice on peritoneal mets but I only know what I've read here and a few other places. There doesn't seem to be too much info out there unfortunately but the fact that yours has decreased in size is definitely a good sign. I don't know if chemo can resolve peritoneal mets completely but I haven't heard that it DOESN'T either.

Hoping someone who has more experience can chime in.

I read in your other thread about SBRT resolving liver metastasis that is too risky for surgery so maybe you can ask your oncologist and surgeon about this.

KEEP FIGHTING!

SGNYC
Posts: 35
Joined: Mon Sep 03, 2018 9:20 pm

Re: Please positivity about peri met

Postby SGNYC » Mon Jan 14, 2019 11:39 pm

Trying,

I can’t fully understand what you’re going through as I’m a caregiver to my DH not the patient, but I can relate to certain aspects of it. I remember when our doctors told us that they were treating my DH with neoadjuvant chemo before surgery and it was very difficult to not shout “roll him into to the OR now and get everything out of him.” But they were right, they know the order to deal with these issues and I fully believe that is exactly what your team is doing for you - getting your ducks in a row as my family told me when I was frustrated with what felt like a confusing order.

I believe you are also in the right place (this forum) to get constructive feedback and up to date info to keep yourself in advocacy mode. It’s always constructive to be informed and get good answers about why the doctors proceed as they do. I believe you’re on a good course but I understand wanting to deal with everything right now! Hang in there.
Wife to DH, 44
DX July 18 - RC at Rectosigmoid
Adenocarcinoma, Mod diff
T3N1M1
Stage IV (but MSK said not a true Stage IV at Dx)
Pos nodes: 1/18
1 Liver Met and 1 Lung Met - liver Met dead tissue at surgery, hence MSK M1 status
Baseline CEA value of 25, now 3.4
LAR (Robotic)/Liver resect(dead tissue), VATS lung - clear margins
Temp Ileo- Reversal Feb 19
Folfox - 5 Rounds Neoadj, 3 rounds Adj, then discontinued Oxali and 4 rounds just 5FU
NED and Reversal Feb 2019 - clear contrast CT, clear contrast MRI

User avatar
Jack&KatiesMommy
Posts: 617
Joined: Wed Dec 21, 2011 1:08 pm
Location: Columbus, OH

Re: Please positivity about peri met

Postby Jack&KatiesMommy » Tue Jan 15, 2019 9:43 am

Trying:
Do you know what your MSI/MSS status is? Is immunotherapy an option?

Cynthia
Cynthia
Mommy to Jack (8) now (17) and Katie (4) now (13)
(My Most Precious Things)
Dx 8/11 Stage IV CRC (liver mets) CEA 2,600+
9/11 Folfiri 2/12: Failed Liver Resection
5/12 HAI pump/removed primary
4/13 Liver Resection
8/13-12/15 (10) RFAs lungs
5/17: Upper Left Lobe of lung resected.
02/18: 3 new lymph mets lung
05/18: Keytruda (MSS w/Intermediate TMB): NED CEA: 66.4, 39.2, 23.8, 13, 3.5 1.8, 1.0, 2.8 3.9, 5.0, 5.6, 1.5, .8,

brokenwings
Posts: 114
Joined: Mon Jan 07, 2019 1:50 am

Re: Please positivity about peri met

Postby brokenwings » Tue Jan 15, 2019 1:12 pm

Dear Nicole/ Trying,

As you know, I'm new here so all I can share with you is what I've read/heard.

I have peri mets like you and my oncologist told me that their response to chemo is quite "personal". Some people (including a lady I read about in this forum) get rid of the peri mets just by doing chemo. As you can see, it can happen.

Worst case scenario, even if your peri mets don't fully go away with chemo and once the mets in your liver disappear, you'll get CRS, right?

Hugs,

Paola
DX 2019 Adenocarcinoma Sigmoid colon. PC + ovarian met.
Obstruction. Temporary colostomy.
Folfirinox + Avastin: 6 cycles. Scans: partial response.
Surgery (CRS + HIPEC) 04/29: too much disease, surgery cancelled. Right ovary removed.
2nd ptotocol: IP chemo (oxaliplatin) + IV chemo (Folfiri + Avastin). 8 cycles
10/31/2019: 11 hour-long Hipec + 6 weeks in hospital
12/30/2019: liver met
02/05/2020: reversal surgery. New peri mets discovered
March 2020: 5fu+Avastin
May 2020: fistula

Trying
Posts: 240
Joined: Sun May 13, 2018 10:11 pm

Re: Please positivity about peri met

Postby Trying » Tue Jan 15, 2019 3:38 pm

Im not a candidate for immumity therapy. Thank you all for responding
38 yr old single mom of almost 2 year old at the time
April 2018 colon cancer stage IV 10 liver mets and peri met. Folfox and 12 rounds oxyplatin
Fec 2018 Down to 2 mets in liver. 8 dissapeared
July 2019 switched to xeloda pills as I prefer to 3 day infusion. Also on avistan
Oct 2019 emergency colostomy due to perforated bowel. ( unreal pain)
Feb 2020 show 2mm tumor increase.
Plan to go back on oxy

rp1954
Posts: 1526
Joined: Mon Jun 13, 2011 1:13 am

Re: Please positivity about peri met

Postby rp1954 » Tue Jan 15, 2019 5:23 pm

In the first month after diagnosis, we "accidently" wiped out a lot of peri met material, essentially a locally complete cure in the area after all the necrotic material was scooped and scraped out. Presumably this was achieved by my wife's mild neoadjunctive substances, immune aids like cimetidine, modified citrus pectin (MCP), high dose vitamin D3, and other natural anti-cancer compounds my wife took for 2-4 weeks before her first surgery, with her "undamaged" immune system (chemo naïve). No chemo was used until 10.5 weeks after dx. A year later, the next surgeon couldn't find any microscopic traces of the peri mets and proceeded with another usually denied surgery that has added many high quality years to her life.

Since then I've backfilled a lot of questions by research on old medical papers and comparison of whatever CA199, LDH, and WBC data I can get, along with the other blood and tissue data. Basically one of our big decisions was whether to go beyond 1-2 months with the initial cimetidine tx, based on response, CA199 blood and tissue data. There are a number of simple steps here where we had to find alternative medical support, or just get it done ourselves.

I've discussed some of these things before if you search my archives.
watchful, active researcher and caregiver for stage IVb/c CC. surgeries 4/10 sigmoid etc & 5/11 para-aortic LN cluster; 8 yrs immuno-Chemo for mCRC; now no chemo
most of 2010 Life Extension recommendations and possibilities + more, some (much) higher, peaking ~2011-12, taper to almost nothing mid 2018, mostly IV C


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