Anyone with peri mets who survived?

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Lydia666
Posts: 674
Joined: Sat Jun 06, 2015 6:50 pm
Location: Montreal, Canada

Anyone with peri mets who survived?

Postby Lydia666 » Wed Oct 03, 2018 2:30 pm

I have local recurrence with peri mets. I am so discouraged. Please help!!
Oct 2012- thyroid cancer
June 19, 2015 Dx@39 yrs- CRC-T3N1M0
No vascular, no perineural invasion
Aug-Sept 2015- 28 rad/5FU
Oct 28, 2015- LAR- temp ileo, neg. nodes- 0/11
March 2016- 6 rounds Xeloda/positive CHEK2 mutation
July 2016- ileo reversal
August 2016- DCIS
Feb 24,2017- prophylactic double mastectomy
May 2018 - clean CT
Sept 2018-clean scope
Devastation, total shock- oct 2018, invasion of peri mets
Mom to 4 & 7 yrs kids (6 mo. & 3.5 yrs at diagnosis in June 2015)

lpas
Posts: 1007
Joined: Wed Nov 19, 2014 11:11 pm

Re: Anyone with peri mets who survived?

Postby lpas » Wed Oct 03, 2018 2:35 pm

We must have cross-posted, Lydia--I just responded to your other thread. Yes! Search the archives for info on SkiFletch. I'm almost positive he had peri mets and survived with HIPEC. Do you have any idea if you're a candidate?
11/14 Dx sigmoid CC @ 45yo
12/14 Colectomy + hysterectomy
Stage IIIB, T3N1bM0, 2/20 nodes, MSS, G2, KRAS(A146T), TP53, SMAD4, ERBB2, CEA 1.0
2/15-7/15 XELOX & Celebrex
3/16 Ovarian mass removed. Benign fibroid
9/16 clean scope
4/18 clean CT
Ongoing Celebrex, Tagamet & other carefully-targeted supplements
Post-chemo CEA 3.0, 2.5, 2.3, 2.0, 1.6, 1.3, 1.8, 2.1, 1.8, 2.0, 1.8, 1.9, 1.7, 1.5, 1.6, 1.5, 1.4, 1.4, 1.3, 1.3, 1.6, 1.6, 1.3, 1.4, 1.6, 2.2, 2.4, 2.1
Mom to a 4 & 6yo

stu
Posts: 899
Joined: Sat Aug 17, 2013 5:46 pm

Re: Anyone with peri mets who survived?

Postby stu » Wed Oct 03, 2018 5:03 pm

That’s who I was going to refer you to . Remember over the years surgeons have become more aggressive with treatment . There has been quite a significant change since my mum started out . The stats will not reflect that information yet .
I really feel for you but get the best team lined up and seek the windows of opportunity. It has served our family well .
Take 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 .

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Russian27
Posts: 489
Joined: Sun May 17, 2009 9:47 am

Re: Anyone with peri mets who survived?

Postby Russian27 » Wed Oct 03, 2018 7:00 pm

I had one large peritoneal met and a met to omentum. I had surgery (not HIPEC) and 6 month chemo in 2009.
Dx at 39(12/2008), Stage IV, omentum mets,
0/16 lymph nodes positive,
right colectomy 1/2009,
FOLFOX + avastin 2/2009-7/2009
Thank You Colonclub! 2015

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Russian27
Posts: 489
Joined: Sun May 17, 2009 9:47 am

Re: Anyone with peri mets who survived?

Postby Russian27 » Wed Oct 03, 2018 7:06 pm

I was considering HIPEC (Dr. Sugarbaker in Washington Cancer center- Washington DC). He was an older gentleman. I don’t know if he is still practicing. Are you in the US? There are several surgeons that do HIPEC here. There is one in Omaha, Nebraska, he is highly selective . You have to be in good physical shape - that is what I heard.
Dx at 39(12/2008), Stage IV, omentum mets,
0/16 lymph nodes positive,
right colectomy 1/2009,
FOLFOX + avastin 2/2009-7/2009
Thank You Colonclub! 2015

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Russian27
Posts: 489
Joined: Sun May 17, 2009 9:47 am

Re: Anyone with peri mets who survived?

Postby Russian27 » Wed Oct 03, 2018 7:11 pm

The name of the Dr. In Omaha is Loggie.
Dx at 39(12/2008), Stage IV, omentum mets,
0/16 lymph nodes positive,
right colectomy 1/2009,
FOLFOX + avastin 2/2009-7/2009
Thank You Colonclub! 2015

hawkowl
Posts: 118
Joined: Sun Dec 14, 2014 5:29 am
Location: MN/FL

Re: Anyone with peri mets who survived?

Postby hawkowl » Wed Oct 03, 2018 9:52 pm

My cousin (lives overseas) had peri Mets. She had HIPEC in 2013 and remains NED
Dx 12/2014 T3N2MX (iliac nodes) low rectal
12/2014-4/2015: FOLFOX (8 cycles)
4/2015-6/2015: 28 cycles of chemoradiation with xeloda
8/2015: Robotic APR with iliac node dissection; path showed ypT0,ypN0 (complete pathological response).
11/2015 scans clear, CEA 2.1
11/2015 parastomal hernia repair
3/2016 CEA 1.7
10/2017 CEA remains in normal range (1.4), scans stable.
6/2018 CEA still normal.

Totally disabled due to oxaliplatin induced neuropathy and dysautonomia

Lee
Posts: 5739
Joined: Sun Apr 16, 2006 4:09 pm

Re: Anyone with peri mets who survived?

Postby Lee » Thu Oct 04, 2018 6:54 pm

Don't have any words of wisdom, butt know that you are in my thoughts and prayers. You will BEAT this!!!

Lee
rectal cancer - April 2004
46 yrs old at diagnoses
stage III C - 6/13 lymph positive
radiation - 6 weeks
surgery - August 2004/hernia repair 2014
permanent colostomy
chemo - FOLFOX
NED - 10 years and counting!

mandosquiddy
Posts: 16
Joined: Sat Oct 06, 2018 11:45 am
Location: Colorado
Contact:

Re: Anyone with peri mets who survived?

Postby mandosquiddy » Sat Oct 06, 2018 12:14 pm

Hi Lydia - I just wanted to add that I am in the exact situation as you. This upcoming Friday I will be having cytoreductive surgery with HIPEC. The replies to your post give me optimism. Both my onc and surgeon have told me that this is still very much curative. Wishing you the best.
4/2017 DX: sigmoid colon cancer
colon resection with colostomy
stage II with one positive margin
5/2017 - 11/17 12 rounds of FOLFOX
11/17 - 12/17 Increase in back pain and testicular pain.
CEA increased, CT scan indicated mass on rectal portion of colon
1/18 - 2/18 25 rounds of radiation treatment
5/18 surgery, interoperative radiation, bladder/ureter modification
7/18 normal blood work and CT scan
9/18 increased CEA, mass on outside of small intestine
10/18 Debulking surgery HIPEC skipped bc complications

rp1954
Posts: 1390
Joined: Mon Jun 13, 2011 1:13 am

Re: Anyone with peri mets who survived?

Postby rp1954 » Sat Oct 06, 2018 3:58 pm

We got rid of the peri mets between the initial diagnosis and first surgery, with likely several different circumstances.

The peritoneum is a macrophage rich area of the body. Macrophages, a type of granulocyte, can be helpful or harmful depending on their immune properties. So in many cases, peritoneal mets might reflect a kind of immune failure or reversal. If the peritoneal macrophages can be turned on against the mets that would solve some transport issues. In my wife's case, her peritoneal mets and met deposits suffered a massive granulocyte attack, where ever they came from, making her initial surgery, pre-chemo, unusually successful. I tend to assume some part of her granulocyte inventory was activated or targeted by some combination of her immune and alternative chemistry protocol.
watchful, active caregiver for stage IVb CC since early 2010. immuno"Chemo forever," for mCRC

Lydia666
Posts: 674
Joined: Sat Jun 06, 2015 6:50 pm
Location: Montreal, Canada

Re: Anyone with peri mets who survived?

Postby Lydia666 » Sun Oct 14, 2018 9:37 pm

mandosquiddy wrote:Hi Lydia - I just wanted to add that I am in the exact situation as you. This upcoming Friday I will be having cytoreductive surgery with HIPEC. The replies to your post give me optimism. Both my onc and surgeon have told me that this is still very much curative. Wishing you the best.

Have you had your surgery? Thinking of you.
Laura
Oct 2012- thyroid cancer
June 19, 2015 Dx@39 yrs- CRC-T3N1M0
No vascular, no perineural invasion
Aug-Sept 2015- 28 rad/5FU
Oct 28, 2015- LAR- temp ileo, neg. nodes- 0/11
March 2016- 6 rounds Xeloda/positive CHEK2 mutation
July 2016- ileo reversal
August 2016- DCIS
Feb 24,2017- prophylactic double mastectomy
May 2018 - clean CT
Sept 2018-clean scope
Devastation, total shock- oct 2018, invasion of peri mets
Mom to 4 & 7 yrs kids (6 mo. & 3.5 yrs at diagnosis in June 2015)

henry123
Posts: 146
Joined: Sun Oct 08, 2017 3:25 am

Re: Anyone with peri mets who survived?

Postby henry123 » Sat Oct 20, 2018 12:55 pm

Hi
I had peri mets but was considered unfit for HIPEC as mets were there in lungs and liver too.
Fortunately, immunotherapy worked for me and it seems peritoneal mets are gone.
As per my understanding traditional Chemo doesn't work too well for peri mets as there is not a lot of blood supply in that area. So that's why HIPEC ( a form of chemo only) has to be done.
Last edited by henry123 on Wed Nov 21, 2018 6:30 pm, edited 1 time in total.
46yo M
5/16 lap AR 14/21 L nodes +ve
T4N2M1
7/16 Capox 9 cyc
9/16 cea 2
1/17 550
PET CT mets in lung & peri
iri+ avast fail
3/17 10577
msi-h Lynch
4/17 regro fail
5/17 cea 28800
5/17 CT inc in size of mes nodes , new onset of multi nodules in liver.
6/17 Opdivo start
7/17 26754
8/17 5623
9/17 497
10/17 52
11/17 12
CT all clear exc a nodule in Lung. liver normal
1/18 3.6
2/18 2.3
4/18 2.0
opdivo continue
Aspirin start
6/18 1.5 CT clear NED
8/18 1.3
10/18 1.2
Vegan yoga juicing apricot

mandosquiddy
Posts: 16
Joined: Sat Oct 06, 2018 11:45 am
Location: Colorado
Contact:

Re: Anyone with peri mets who survived?

Postby mandosquiddy » Sat Oct 20, 2018 6:53 pm

Lydia666 wrote:
mandosquiddy wrote:Hi Lydia - I just wanted to add that I am in the exact situation as you. This upcoming Friday I will be having cytoreductive surgery with HIPEC. The replies to your post give me optimism. Both my onc and surgeon have told me that this is still very much curative. Wishing you the best.

Have you had your surgery? Thinking of you.
Laura


I had surgery on October 12th as planned and was released from the hospital yesterday October 19th. They removed the tumor from the outside of my small intestine and determined that it was indeed cancer. They removed a few various other sets of tissue that are standard with this operation but did not see any obvious signs of other tumors. At the time of my last surgery in May my left ureters (yes I have a duplicated system on left side) had gotten intertwined with the tumor I was fighting then. They had to remove pieces of ureter and I had a foley catheter in for almost a month after and stents in the ureters for two months. Well this time they noticed damage to my right ureter probably resulting from the reshaping of my bladder during my last surgery. So they removed a piece of that ureter and now I'm repeating the whole catheter/stent process again. At this point the surgery had gone close to 12 hours and they decided the benefit of HIPEC was worth the risk of additional surgical time. So I got no chemo and am not sure how I feel about it. The surgeon made it sounds like studies seem to have mixed results regarding the benefit of HIPEC. I should note that they also took down my colostomy and gave me a temporary illeostomy. The plan is to have me entirely together again in a couple months. It sucks to think of doing more surgery in just a matter of weeks but I'm going to do what it takes to get me back to NED and back to normal life.

Now I'm just recovering at home while I wait for my follow-up appointment next week and results of the path report.
4/2017 DX: sigmoid colon cancer
colon resection with colostomy
stage II with one positive margin
5/2017 - 11/17 12 rounds of FOLFOX
11/17 - 12/17 Increase in back pain and testicular pain.
CEA increased, CT scan indicated mass on rectal portion of colon
1/18 - 2/18 25 rounds of radiation treatment
5/18 surgery, interoperative radiation, bladder/ureter modification
7/18 normal blood work and CT scan
9/18 increased CEA, mass on outside of small intestine
10/18 Debulking surgery HIPEC skipped bc complications

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dianetavegia
Posts: 2710
Joined: Sat May 16, 2009 8:47 pm
Facebook Username: Diane Weldy Tavegia
Location: Villa Rica, Georgia
Contact:

Re: Anyone with peri mets who survived?

Postby dianetavegia » Mon Oct 22, 2018 7:48 pm

Bumping for new member
Stage IIIB cc surgery 1/7/09. 5/17 nodes. 12 tx FOLFOX
Stage IVa 2/15/12. CEA 6.4 PET = 1.5cm liver met. HR 4/11/12 No chemo

Nine years 10 months since dx and 6 1/2 years post liver resection.
NED Oct. 2018

“O Lord my God, I cried out to You, And You healed me.” Psalms 30:2

mandosquiddy
Posts: 16
Joined: Sat Oct 06, 2018 11:45 am
Location: Colorado
Contact:

Re: Anyone with peri mets who survived?

Postby mandosquiddy » Thu Oct 25, 2018 5:45 pm

Yesterday I got pathology results and they couldn't be any better. The only cancer was the tumor we already knew about. No positive lymph nodes or margins. We are cautiously optimistic b/c we had a very similar path report after surgery in May.
4/2017 DX: sigmoid colon cancer
colon resection with colostomy
stage II with one positive margin
5/2017 - 11/17 12 rounds of FOLFOX
11/17 - 12/17 Increase in back pain and testicular pain.
CEA increased, CT scan indicated mass on rectal portion of colon
1/18 - 2/18 25 rounds of radiation treatment
5/18 surgery, interoperative radiation, bladder/ureter modification
7/18 normal blood work and CT scan
9/18 increased CEA, mass on outside of small intestine
10/18 Debulking surgery HIPEC skipped bc complications


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