Ned from Hipec ends here

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Steph20021
Posts: 553
Joined: Sat Dec 27, 2014 4:58 pm
Location: Ontario, Canada

Ned from Hipec ends here

Postby Steph20021 » Tue May 24, 2016 12:59 pm

It's been a really nice 9 months of no treatment, but my May scan shows small lesions in my left abdominal wall, basically at an incision area where they went in for hipec. My CEA is pending and I'll have that info tomorrow. A pet scan is being ordered regardless of the cea to confirm its not just scar tissue, but I'm having pain and tenderness in that area so my onc thinks it's cancer. The pet will also help my surgical onc determine if a surgery again is doable. Onwards we go, but just need to muster up the courage to face all the shit again. Thinking of you all.
Last edited by Steph20021 on Tue May 24, 2016 1:21 pm, edited 1 time in total.
DX 1/31/14 @ 33- SPS-T4a(invades visceral peri), N2a(6/106 LN), M1a(ovary) (Stage 4a) MSS; BRAF V600E
2/1/14-subtotal col, lost R ovary, temp ileo
3/14-9/14- folfox; sepsis
11/14-CT/PET: L ovary met, pelvic met, (?)ghost liver met(?)
12/14-folfiri -13 rds kept me stable from 3/15-6/15
8/15-HIPEC, NED
09/15- cea 0.9
05/16- recurrence in abdo wall and lymph nodes
01/17- pulmonary embolism
02/17- 1 wk radiation to abdo wall
08/16- on folfiri
01/18-folfox
11/18- Beacon trial-encorafenib & cetuximab
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DarknessEmbraced
Posts: 3817
Joined: Sat Nov 01, 2014 4:54 pm
Facebook Username: Riann Fletcher
Location: New Brunswick, Canada

Re: Ned from Hipec ends here

Postby DarknessEmbraced » Tue May 24, 2016 1:11 pm

I'm so sorry!*hugs*
Diagnosed 10/28/14, age 36
Colon Resection 11/20/14, LAR (no illeo)
Stage 2a colon cancer, T3NOMO
Lymph-vascular invasion undetermined
0/22 lymph nodes
No chemo, no radiation
Clear Colonoscopy 04/29/15
NED 10/20/15
Ischemic Colitis 01/21/16
NED 11/10/16
CT Scan moved up due to high CEA 08/21/17
NED 09/25/17
NED 12/21/18
Clear colonoscopy 09/23/19
Clear 5 year scans 11/21/19- Considered cured! :)
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BrownBagger
Posts: 7954
Joined: Fri Jul 24, 2009 2:56 pm
Location: Central NYS

Re: Ned from Hipec ends here

Postby BrownBagger » Tue May 24, 2016 1:29 pm

Tough having to go through HIPEC only to have a recurrence so soon. Maybe your doc is wrong. It happens.

In any event, good luck!
Eric, 58
Dx: 3/09, Stage 4 RC
Recurrences: (ongoing, lung, bronchial cavity, ribs)
Major Ops: 6/ RFA: 3 /bronchoscopies: 8
Pelvic radiation: 5 wks. Bronchial radiation—brachytheray: 3 treatments
Chemo Rounds (career):136
Current Chemo Cocktail: Xeloda & Erbitux & Irinotecan biweekly
Current Cocktail; On the Wagon (mostly)
Bicycle miles post-dx 10,477
Motto: Live your life like it's going to be a long one, because it just might, and then you'll be glad you did.
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tigerpaw
Posts: 57
Joined: Sat Jun 20, 2015 1:34 pm
Facebook Username: kristin.lossius
Location: Norway

Re: Ned from Hipec ends here

Postby tigerpaw » Tue May 24, 2016 2:01 pm

I have learned it is not unusual to have mets in the incisional area after HIPEC. I had one removed from the scar tissue in the midline 7 months after HIPEC. I am doing well now
63y female
dx July 13 resection of primary in sigmoid colon
Stage 3B cc, T3N1M0
KRAS mutant, codon 12/13, MSS
FLOX (FLV infusion 2 consecutive days + oxi) August 2013. Oxi stopped after 8tx
clear CT 6/14
peri mets + lung met 12/14
1/15 HIPEC
3/15 Lung resection
8/15 Subcutaneous met in midline abdomen-resected
8/15 Two lung nodules, observation, no chemo
2/17 enlarged lymph nodes hilus and mediastinum
5-8/17 FLV + Avastin
3/18 radiation to mediastinal and hilar lymph nodes
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debb
Posts: 191
Joined: Sun Dec 21, 2008 9:03 pm
Location: NJ

Re: Ned from Hipec ends here

Postby debb » Tue May 24, 2016 2:26 pm

Hi...so sorry that you have to worry about this. I wanted to let you know that I also had a met at the hipec incision site. I had a "small" surgery to remove, no chemo afterwards, and cancer free in that area since then. (Still dealing with lung mets/watching right now..)
So if that's what it turns out to be for you, be hopeful!
Good luck!
2008, Stage 3C, age 42, mom of 4
Folfox 9/08-2/09
Met to right ovary, both removed 7/10
HIPEC 8/10
VATS 7/12, right lung
10/14 Stivarga clinical trial
3/15-7/15 Folfiri & avastin
8/16 Folfiri & avastin
Break! 10 months of freedom
1/18 - 4/23 many Folfiri & Avastin
6/23 Clinical trial REGN7075. Progression
8/23 radiation to femurs and L4
9/23 rechallenged Folfox. Allergic reaction at 4th infusion
11/23 will start Bot/Bal
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Apple1291
Posts: 68
Joined: Mon Jul 04, 2011 2:14 pm

Re: Ned from Hipec ends here

Postby Apple1291 » Tue May 24, 2016 7:33 pm

I'm very sorry. I hope your doctor is wrong, or at least that there is an "easy" fix. Good luck. I'll be thinking of you.
Daughter to Dear Father 57 years old at diagnosis
T4N0MO July/11
12 rounds folfox completed March/12
Recurrence June/16 peritoneal carcinomatosis
12 rounds folfiri and avastin completed November/16
Many more rounds of chemo and 12 tx radiation
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LeonW
Posts: 358
Joined: Sun May 03, 2015 4:59 pm
Location: Amsterdam, Netherlands

Re: Ned from Hipec ends here

Postby LeonW » Wed May 25, 2016 9:18 am

Hi Steph, sorry to hear. Let's hope Tigerpaw & Debb are right and that this mishap can be corrected.
Let us know when you have more/better news. H
Dec 2012 - CC 2 unresect liver mets, CEA 41.8 (MM 65yrs)
Jan 2013 - colectomy @ spleen 2/26 nodes IVa T3N1bM1a
Feb-Jul - 1x Xelox-7x Xelox/Avastin, shrinkage from #3
Aug - 2x PV embolization (both failed)
Sep 2013 - R liver resect, 25d hosp (liver failure/delirium, lung emboli, encephalopathy), no living cancer (pCR)
2014/15 - recovery, scopy: 2 polyps
2016 - new town/life
2018, scopy: 2 polyps
2018/20 low (1.0-1.4) CEAs/clean CTs: 4x2014, 6x2015-17, 3x2018-20
next June 2021!
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Mattie
Posts: 76
Joined: Fri Mar 07, 2014 1:06 am

Re: Ned from Hipec ends here

Postby Mattie » Wed May 25, 2016 1:10 pm

I'm sorry about your recurrence.
4/10 debulk surgery, DX stage IVb, 49yo
5/10-11/11 Folfox, then Xeloda/Avastin
4/13 Resect liver met + pelvic node, 20+ Rad treatments
7/14 SBRT 15 mm Liver & node
12/14 SBRT 8 mm Liver met
3/16 4-5 pelvic nodes, Xeloda/Avastin again
12/16 NED, maintaining Xeloda/Avastin
8/17 NED Dropping Xeloda. Avastin only.
3/21 NED Avastin only
10/21 Pausing Avastin Proteinuria/BP complications
12/21 Resect 4.4 x 3.6 cm lower abdominal met
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Nik Colon

Re: Ned from Hipec ends here

Postby Nik Colon » Wed May 25, 2016 1:14 pm

Best wishes
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Steph20021
Posts: 553
Joined: Sat Dec 27, 2014 4:58 pm
Location: Ontario, Canada

Re: Ned from Hipec ends here

Postby Steph20021 » Wed May 25, 2016 8:09 pm

tigerpaw wrote:I have learned it is not unusual to have mets in the incisional area after HIPEC. I had one removed from the scar tissue in the midline 7 months after HIPEC. I am doing well now


Hi tigerpaw, this is encouraging to hear. Thanks for posting. To me it means they won't give up on surgery just because it was such a quick recurrence, that surgery may be considered. Did they make you do mop up chemo after? Was it a simple resection as opposed to another hipec? How long were you in the hospital for recovery? Was your recurrence in the abdominal wall too? I don't know how much they can keep chipping away at the wall.
DX 1/31/14 @ 33- SPS-T4a(invades visceral peri), N2a(6/106 LN), M1a(ovary) (Stage 4a) MSS; BRAF V600E
2/1/14-subtotal col, lost R ovary, temp ileo
3/14-9/14- folfox; sepsis
11/14-CT/PET: L ovary met, pelvic met, (?)ghost liver met(?)
12/14-folfiri -13 rds kept me stable from 3/15-6/15
8/15-HIPEC, NED
09/15- cea 0.9
05/16- recurrence in abdo wall and lymph nodes
01/17- pulmonary embolism
02/17- 1 wk radiation to abdo wall
08/16- on folfiri
01/18-folfox
11/18- Beacon trial-encorafenib & cetuximab
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Steph20021
Posts: 553
Joined: Sat Dec 27, 2014 4:58 pm
Location: Ontario, Canada

Re: Ned from Hipec ends here

Postby Steph20021 » Wed May 25, 2016 8:11 pm

debb wrote:Hi...so sorry that you have to worry about this. I wanted to let you know that I also had a met at the hipec incision site. I had a "small" surgery to remove, no chemo afterwards, and cancer free in that area since then. (Still dealing with lung mets/watching right now..)
So if that's what it turns out to be for you, be hopeful!
Good luck!

Hi debb thank you for reading and sharing this. You and tigerpaw both having this similar thing gives me hope it's not all uncommon and gets dealt with. Sorry to hear about the other mets you are dealing with though. I really don't want to be back on systemic chemo again yet. I wonder if the docs have any theories on why the incision site becomes a hotspot after hipec?
DX 1/31/14 @ 33- SPS-T4a(invades visceral peri), N2a(6/106 LN), M1a(ovary) (Stage 4a) MSS; BRAF V600E
2/1/14-subtotal col, lost R ovary, temp ileo
3/14-9/14- folfox; sepsis
11/14-CT/PET: L ovary met, pelvic met, (?)ghost liver met(?)
12/14-folfiri -13 rds kept me stable from 3/15-6/15
8/15-HIPEC, NED
09/15- cea 0.9
05/16- recurrence in abdo wall and lymph nodes
01/17- pulmonary embolism
02/17- 1 wk radiation to abdo wall
08/16- on folfiri
01/18-folfox
11/18- Beacon trial-encorafenib & cetuximab
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Steph20021
Posts: 553
Joined: Sat Dec 27, 2014 4:58 pm
Location: Ontario, Canada

Re: Ned from Hipec ends here

Postby Steph20021 » Wed May 25, 2016 8:13 pm

Thank you all for reading, for your support and kind words. I have a followup with my onc June 14 so she expects to have the scan and results by then.
DX 1/31/14 @ 33- SPS-T4a(invades visceral peri), N2a(6/106 LN), M1a(ovary) (Stage 4a) MSS; BRAF V600E
2/1/14-subtotal col, lost R ovary, temp ileo
3/14-9/14- folfox; sepsis
11/14-CT/PET: L ovary met, pelvic met, (?)ghost liver met(?)
12/14-folfiri -13 rds kept me stable from 3/15-6/15
8/15-HIPEC, NED
09/15- cea 0.9
05/16- recurrence in abdo wall and lymph nodes
01/17- pulmonary embolism
02/17- 1 wk radiation to abdo wall
08/16- on folfiri
01/18-folfox
11/18- Beacon trial-encorafenib & cetuximab
Top
jhocno197
Posts: 817
Joined: Mon May 11, 2015 9:33 pm

Re: Ned from Hipec ends here

Postby jhocno197 » Wed May 25, 2016 8:57 pm

:(
DH - dx Dec 2014, stage IV with bladder & peritoneal involvement - non-resectable
Colostomy
FOLFOX failed
FOLFIRI failed
Tumor actually distending pelvic skin
Not a candidate for last-ditch pelvic exenteration
Stivarga finally begun 2/19/16
Tumor growing/fungating
Lonsurf started 11/18/16
Died 3/10/17
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tigerpaw
Posts: 57
Joined: Sat Jun 20, 2015 1:34 pm
Facebook Username: kristin.lossius
Location: Norway

Re: Ned from Hipec ends here

Postby tigerpaw » Thu May 26, 2016 5:08 am

My met was located in the scar, but on the outside of the abdominal musculature. So it was a simple procedure to remove it. I was admitted in the evening and discharged the next day. Back to work in four days. No mop up chemo.

Good luck to you!
63y female
dx July 13 resection of primary in sigmoid colon
Stage 3B cc, T3N1M0
KRAS mutant, codon 12/13, MSS
FLOX (FLV infusion 2 consecutive days + oxi) August 2013. Oxi stopped after 8tx
clear CT 6/14
peri mets + lung met 12/14
1/15 HIPEC
3/15 Lung resection
8/15 Subcutaneous met in midline abdomen-resected
8/15 Two lung nodules, observation, no chemo
2/17 enlarged lymph nodes hilus and mediastinum
5-8/17 FLV + Avastin
3/18 radiation to mediastinal and hilar lymph nodes
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testing765
Posts: 324
Joined: Tue Aug 19, 2014 9:41 am

Re: Ned from Hipec ends here

Postby testing765 » Sat May 28, 2016 11:01 am

I hope that the pet scan reveals that it is only scar tissue or that it is something surgically removeable and treatable. Regards.
male-age 44 at diagnosis
8/14-clnscopy
8/14-CT scan,no mets
9/14-left colectomy,CEA 2.2 before surgery
pT2pN2bpM0
3 cm tumor in dscnding colon
7/23 pos LNs
low grade MSI stable
10/14-start folfox
1/15-CT & PET scan and sigmdoscopy- no mets
3/15-finish folfox
9/15- clnscopy- 3 polyps removed
10/15- CT scan, NED
10/16- CT scan, NED, CEA 1.6
10/17- clnscopy- 4 polyps removed, CT scan NED, CEA 1.8
10/14 1.9; 4/15 2.8; 5/15 2.4; 9/15 2.8; 12/15 3.1; 1/16 3.0; 4/16 2.5; 7/16 2.5; 10/16 1.6; 1/17 1.9
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