Please feel free to read, share your thoughts, your stories and connect with others!
Posts: 214
Joined: Sat Jun 28, 2014 5:12 pm


Postby aja1121 » Mon Oct 22, 2018 8:32 am

I don't post much here anymore (more active on the Colontown Facebook groups) but figured I should provide an update. My husband's local recurrence of rectal cancer continued to grow throughout three clinical trials. The tumor is low in his pelvis and has broken through the skin of his perineum, causing a draining wound which is difficult to deal with. He started home hospice care about three weeks ago. I was scared of taking this step, but the hospice team has been very helpful in getting his pain under control.

I wish I had something inspirational to offer, but I really don't. I hate this disease more than words can possibly express.
05/23/14 DH dx Stage 3B rectal ca (age 41)
6/2014 chemorad | 10/2014 LAR, all nodes clean
FOLFOX x 10 | VATS/lung met | ileo reversal
09/15 local recurrence
10/15 colostomy
11/15 FOLFIRI x 4, major growth
02/16 tumor debulked
Stable ten months on Xeloda/Avastin
Growth on clinical trials NCT02024607 (BBI608 + FOLFIRI), NCT02817633 (anti-PD-1 + anti-TIM-3), NCT03175224 (c-Met inhibitor)
09/27/2018 started hospice
02/07/19 died

User avatar
Posts: 388
Joined: Wed Oct 25, 2017 9:31 am

Re: Update

Postby Atoq » Mon Oct 22, 2018 9:01 am

I am sorry about the reoccurrence, sad that chemo did not help. I hope your husband gets the best possible care and quality of life.

A big hug

1972, 2 kids
Dx rectal cancer 10.2017
T3N2aMX (suspect met left lung 8 mm)
Lynch neg
CEA 1.8
Neoadjuvant chemoradio Xeloda + 25x2 Gy
05.12.17 laparotomic surgery for blockage, colostomy
25.01.18 laparotomic lar, hysterectomy, ileostomy
05.03.18 core needle lung biopsy , stage IV
07.05.18 CAT scan, lung met 11 mm
04.06.18 ileo reversal
26.06.18 wedge VATS
24.08.18, 31.02.19 CAT scan
12.09.18, 06.02.19 scope, CEA 1.6
19.11.18 colonscopy
20.08.19 CAT, eco
13.09.19 scope, CEA 1.2
18.03.20 CAT, eco, scope, NED

Posts: 158
Joined: Sat Mar 11, 2017 8:30 pm
Location: near DC

Re: Update

Postby mhf1986 » Mon Oct 22, 2018 3:36 pm

Sending HUGS.

Caregiver to DH, dx @ 50, mets to liver/lungs, MSS, wild
9/16 CEA 114, blockage, left hemi, perm. colostomy
11/16 port in, FOLFOX + Avastin
6/17 CEA 15, 5FU + A only due to neuropathy
11/17 CEA 38, CAPOX + A
1/18 CAPOX = hi bilirubin/bad hfs, back to FOLFOX + A
5/18 growth; Vectibex + 75% Irinotecan
7/18 CEA 23, shrinkage
10/18 CEA 28, growth of 2 liver tumors/shrinkage of few and lung nodes
11/18 Lonsurf, looking at spheres, proton, trials
11/19/18 Peace

Posts: 6165
Joined: Sun Apr 16, 2006 4:09 pm

Re: Update

Postby Lee » Mon Oct 22, 2018 9:49 pm

I am so sorry to read this. I hope and pray your DH is pain free surrounded by family, friends and love.

Gentle hugs to you and your husband,

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 - 16 years and counting!

User avatar
Posts: 156
Joined: Wed Apr 11, 2018 1:44 pm
Location: Ontario

Re: Update

Postby mobrouser » Mon Oct 22, 2018 10:24 pm

aja1121 wrote:..... I hate this disease more than words can possibly express.

So true. Please take care and know that your husband,and you and your family are in my thoughts.

CC Dx Oct 2017 @ age 58
Laparoscopic right hemi-colectomy Dec 2017
Adenocarcinoma ascending colon – 6cm x 6cm x 2cm, Low Grade, penetrates to peritoneum
T4a N2a M0, Stage IIIC
lymph nodes 6 positive out of 18
FOLFOX started Jan 16 2018; finished Aug 2 2018 (felt like a year)
CEA - 01/15/18 - 2.8; 07/29/18 - 5.3
CT scan Aug 8 2018 - Clear
PET scan Sept 6 2018 (thought about bringing the cat :wink: ) - Clear
Colonoscopy Dec 7 2018 - Clear - Next in 3 years?

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

Re: Update

Postby Steph20021 » Mon Oct 22, 2018 11:48 pm

As someone who is about to start her first clinical trial, I am angry to read that your young husband has tried 3 (!!!) clinical trials and they have all failed him already. They haven’t given him enough time! Though it’s never going to be enough time is it? This disease pisses me off and the only thing that angers me more than the disease is the shitty treatment options we have!
I am so sorry. I’m praying for a miracle for all of us in this stage 4 boat.
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
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
11/18- Beacon trial-encorafenib & cetuximab

Posts: 3523
Joined: Sat Nov 01, 2014 4:54 pm
Facebook Username: Riann Fletcher
Location: New Brunswick, Canada

Re: Update

Postby DarknessEmbraced » Tue Oct 23, 2018 11:54 am

I'm so very sorry your husband is having such a hard time and is dealing with a recurrence!*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! :)

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

Who is online

Users browsing this forum: No registered users and 2 guests