Anyone have experience with this???

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teresajj1
Posts: 37
Joined: Sun Mar 27, 2016 7:36 pm
Location: Florida

Anyone have experience with this???

Postby teresajj1 » Fri Jun 29, 2018 4:43 pm

I am scheduled in 2 days for cytoreductive surgery and hipec chemo at Moffitt in Tampa. I had 2 wonderful years with NED and then last month the bottom dropped out from underneath me. CEA is 447 and CA-125 is 144. 3 very large tumors found. My doctor says even if he can remove it all, typically the cancer reaccurs within 12 months in almost all patients.

I am extremely nervous about this 9-12 hour surgery, what to expect, how long it takes to recover, if the Hipec has side effects etc.? Ive had many surgeries in my 39 years, but this is the first time I am really scared. :|

Has anyone had any experience with either this surgery or hipec? Are there any Stage IV'ers out there that have been NED beyond 12 months?

Thank You! Stay Strong Everyone! We Can Beat This!
Dx 3/16 @ 36yrs Stage IIIB
RT Hemi-colectomy
T3N1M0. 2/37 lymph nodes
4/2016 Started 12 rounds of 5 FU & Oxi Chemo
7/2016 Stopped chemo after 5 rounds due to chest pain
8/2017 MUYTH Gene
10/2017 Clear CT Scan; CEA 1.9
5/2018 CEA 447 & CA-125 144
6/2018 Stage IV w/drop metastases to peritoneal cavity
7/2018 Cytoreductive surgery & Hipec (3 tumors, 2 nodules on bladder, and ovaries removed)
10/2018 Clear CT
05/2019 Clear CT
07/2019 CEA 8.6

User avatar
Robino1
Posts: 463
Joined: Fri Aug 11, 2017 12:09 pm
Facebook Username: Robin.lawthers
Location: Florida

Re: Anyone have experience with this???

Postby Robino1 » Fri Jun 29, 2018 8:19 pm

I've heard of a few that have reached long term NED status. They don't post here much anymore from what I understand. I was just turned down for HIPEC which was devastating for me. They did say that a change in chemo was warranted since there is progression under FOLFOX. I was encouraged to do the chemo change then revisit after my next scan in 3 months. One of my tumors are now going through the abdominal wall. :(

From what I understand, you should have no chemo side effects since the chemo is not being put through your veins.

Please post all your experiences. I will be following your story closely.
At 54 2014 1st colonoscopy colon cancer detect
Colon resect margins clear. No chemo Stage II
2017
Distend abd, pain in intestines.
CT scan seeding & Ascites
Lap diag - cancer on the omentum
CEA 217; 219
FOLFOX started 6/17
CEA 202
8/29/17 CT melting of tumor.
Latest CT scan shows 2 new tumors and return of ascites.
CEA: (2017)9/30 -109; 10/12 -99.1; 11/4 -90.7; 11/30 -70.7; 12/14 -83.4; (2018)1/4 -73.3; 2/1-84.2; 89.2; 89.8; 88.5; 81.8: 93.5; 107; 119
BRAF V600e

hawkowl
Posts: 125
Joined: Sun Dec 14, 2014 5:29 am
Location: MN/FL

Re: Anyone have experience with this???

Postby hawkowl » Fri Jun 29, 2018 9:07 pm

My cousin is still NED more than 4 years after her HIPEC surgery. So definitely don't give up hope!
Dx 12/2014 T3N2MX (distant LPLN) 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.
Now dealing with pyoderma gangrenosum.
Totally disabled due to oxaliplatin induced neuropathy and dysautonomia

bitchslapped
Posts: 1525
Joined: Tue Sep 09, 2014 3:23 pm
Location: PNW/USA

Re: Anyone have experience with this???

Postby bitchslapped » Fri Jun 29, 2018 11:25 pm

You can read my BFF's experience here:
http://coloncancersupport.colonclub.com ... ec#p473261

Best Wishes on your upcoming surgery!

BS
DSS,35YO,unresect mCRC DX 7/'14,lvr,LN,peri,rib
FOLFOX+Avstn 4 Rnds d/c 10/'14
Stent 9/'14
FOLFIRI+Avstn 10/'14
Gone From My Sight 2/20/15
Me:garden variety polyps + precancerous polyp, diverticulitis
Carergver x2 DH,DM dbl occupancy,'03-'10
DH dx 47YO mCRC,'04-'07 fried x HAI
DM dx CC 85YO,CC,CHF,stroke,dementia,aphasia

rp1954
Posts: 1523
Joined: Mon Jun 13, 2011 1:13 am

Re: Anyone have experience with this???

Postby rp1954 » Sat Jun 30, 2018 3:14 pm

Papers on xeloda (pro5FU) with celecoxib, and from Japan, UFT (pro5FU)-cimetidine-PSK, suggest that continuous oral treatment can indefinitely postpone spread and/or recurs for a lot of mCRC, stage 4 patients even with some residual masses. One of Dr Lin's ADAPT papers was approaching 8 years without losing 50% (a median OS). This can be improved several ways by more minor chemistry.

Our exploration has been to combine these with other potent anticancer supplements more effectively, more specifically, and more immediately for biology changes. The ticket has been a better series of common blood tests closer together in the first years, and off label chemistry. My non technical wife can do much of the blood analysis by mimicry.
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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