Anyone with peri mets who survived?

Please feel free to read, share your thoughts, your stories and connect with others!
Lydia666
Posts: 673
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: 849
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

User avatar
Russian27
Posts: 488
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

User avatar
Russian27
Posts: 488
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

User avatar
Russian27
Posts: 488
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: 113
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: 5680
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: 3
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.
4/2007 DX: sigmoid colon cancer
colon resection with colostomy.
stage II with one positive margin
5/2017 to 11/17 12 rounds of FOLFOX chemotherapy
11/17 to 12/17 Increase in back pain and testicular pain.
CEA increased, CT scan indicated mass on rectal portion of colon
1/18 to 2/18 25 rounds of radiation treatment
5/18 surgery with interoperative radiation and bladder/ureter modification
7/18 normal blood work and CT scan
9/18 increased CEA, mass on outside of small intestine
10/18 surgery with HIPEC

rp1954
Posts: 1379
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: 673
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)


Return to “Colon Talk - Colon cancer (colorectal cancer) support forum”



Who is online

Users browsing this forum: heiders33 and 46 guests