Bad News From Doc

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PEEJAY
Posts: 54
Joined: Thu Aug 27, 2015 2:28 am

Bad News From Doc

Postby PEEJAY » Thu Nov 26, 2015 3:55 pm

Found out today that chemotherapy is no longer working. The mets in my liver have grown significantly and moved onto the lymph nodes, pelvic area, and even some spots down around my stoma. It's weird because if I'm going down, I'm excited to get off chemo! Hoping to get a new life expectancy by Tuesday.
Age 33
Stage 4 CC with 20+ mets to liver 1/20/2015
8 Rounds Folfoxiri feb - april 2015
Colon Resection 5/2015
Permanent Colostomy
Peritoneal Carcinoma found
Folfiri + Erbitux 6/2015 - 9/2015
Angiomapping for Y90 9/24/2015
Y90 Treatment 10/13/2015
Power port re-placing sched. 10/23/2015
Due back for chemo 10/29/2015 (right before trick or treating!!!)
11/26 Chemo not working
My colon cancer podcast "I'm Dying Here" in iTunes: https://itunes.apple.com/us/podcast/im- ... 1035722798

midlifemom
Posts: 1358
Joined: Wed Jan 15, 2014 10:58 am
Location: NJ

Re: Bad News From Doc

Postby midlifemom » Thu Nov 26, 2015 5:04 pm

Peejay, sorry to hear your news. When I thought I was worse off than I was, I was also psyched about the no more chemo aspect. Best of luck with your appointment Tuesday.
Stage 3 cc - dx Jan '14 age 53, cea 2.9
t2n2m0, KRAS mutant, MSS
Folfox Feb - Aug '14
Nov '14 cea 27.7 -2 liver masses
Dec '14 left lobectomy and HAI
Jan '15 FUDR and FOLFIRI
Aug '15 fudr done, liver clear, add avastin for lungs. Cea 4.3
Feb '16 CEA rising
May '16 2 wk break then drop Iri for 6 weeks.
Jul '16 cancer grew, constricted main bile duct. Stent inserted. On break till jaundice clears. CEA climbing. Doing reduced Folfox. Allergic to Oxali.
Sep'16 chemo failed. Trial or hospice?

plastikos
Posts: 330
Joined: Wed Jan 14, 2015 6:09 am

Re: Bad News From Doc

Postby plastikos » Thu Nov 26, 2015 5:14 pm

Peejay, sorry to hear this. Is getting another onc's opinion out of the question? There must be other options chemo or otherwise. Avastin? How about looking at clinical trials? At the very end if all else fails I would start trying those alternative therapies. There's always a chance one of them might work.
St. IV Colon CA @ 37, male, Kras wild, MSI-high (2014)
11/2014 Right Hemicolectomy + Liver Resection
12/2014 - 6/2015 FOLFOX + Cetuximab
10/2015 - Recurrence liver
Liver resection 10/2015
FOLFIRI 11/2015 - 5/2016
Recurrence liver, nodes 11/2016
Pembrolizumab started 12/2016 -> pseudoprogression(?) -> biliary obstruction -> biliary stenting
Chemo 4x: most mets inactive and smaller on PET-CT
March 2017 - Back on Pembrolizumab again
Sept 2017 - SIRT - > NED
2019 NED

NateA
Posts: 115
Joined: Sun Aug 02, 2015 7:41 pm
Facebook Username: Nathan Drew Allen

Re: Bad News From Doc

Postby NateA » Thu Nov 26, 2015 7:28 pm

Love ya Peej, you know how to find me anytime you need somebody to talk to.
7/15 dx CC stage 4 with lots of liver mets CEA 208
KRAS Mutant G12V, MSS.
9/23 from folfoxiri to folfox and Xeloda. CEA 25
11/11/15 all liver markers in the zone, CEA 4.0, moving to Avastin/xeloda for now..tumors shrinking
01/13/16 Avastin/xeloda CEA 3.5
03/11/16 clean PET CEA 4.4

Sams wife
Posts: 749
Joined: Sun Jan 11, 2015 2:49 pm

Re: Bad News From Doc

Postby Sams wife » Thu Nov 26, 2015 7:37 pm

Damn. Just damn
Husband dx 1/13/15 St.2 CEA 7.1
Chemo/25rad 2/15 till 4/24/15
5FU/leucovorin
Surgery 6/8/2015 Stage IIa T3N0MX microscopic cancer left
Watching 4 lung spots
0/5 lymph nodes. Lap. APR
25% less 5FU/leucovorin 7/14/2015 x 26 CEA 3.4
25% more 5fu 9/2015
9/16/15 CEA 7.7
1/16/16 @ 9.2 during allergy?
3/16 New lung spot 4x4 mm
6/16 CEA 6.9 spot 5x5

jhocno197
Posts: 817
Joined: Mon May 11, 2015 9:33 pm

Re: Bad News From Doc

Postby jhocno197 » Thu Nov 26, 2015 8:11 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

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

Re: Bad News From Doc

Postby Steph20021 » Thu Nov 26, 2015 11:12 pm

This makes me so sad. Im sorry peejay. I hope they can give you a new chemo to try. Seems you have only just begun. Hug to you.
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

User avatar
ANDRETEXAS
Posts: 625
Joined: Fri Feb 14, 2014 11:01 am
Location: Austin, Texas (University of Tennessee alumnus)

Re: Bad News From Doc

Postby ANDRETEXAS » Fri Nov 27, 2015 3:01 am

One day at a time ---- one fight at a time ---- hang in there ---- wishing you the best at your next appointment ! Andre
2014
2/10 - Colon resect
2/13 - DX- Stage IIIb
6 of 18 lymph nodes cancerous
3/7 - Port placed
3/11 - FOLFOX (12 rds w/full oxi)
8/14 - Chemo finish
8/25 - CT- Inc
9/5 - clean PET
12/10- clean CT
2015
3/2 - Clean colonoscopy & port removed
3/4- clean CT
9/21- clean CT
2016
3/23- clean CT
2017
2/22- clean CT
2018
3/21 - clean CT
4/11 - clean colonoscopy
2019
3/11 - clean CT
9/23 - Five-year release - Annual visits now !
Next colonoscopy - 2023

ONE DAY AT A TIME !

User avatar
chixter
Posts: 121
Joined: Wed Jun 25, 2014 5:31 pm

Re: Bad News From Doc

Postby chixter » Fri Nov 27, 2015 9:18 am

Luv ya PJ, thats all I can say. I'm here on the East coast but I'm in your corner. I think there comes a point in cancer treatment where the person is faced with difficult decisions, one of which is to seek out a new poison that may or may not work. 3 different chemo cocktails were given to Katie with no effect. When we were at the oncs office he brought up Stivarga which Katie had done some research on. She listened to him explain the horrible side effects of this drug and she asked him the probability of it working. He said in his opinion 5-10% chance of it being effective, and he recommended she try it. There were tears in my eyes as I listened to this exchange, in the face of all this she smiled that Katie smile at her doctor and said, "thanks but no thanks, but I think I'll pass on that". I was in awe of my daughter that day. I'm here for you any time you you may feel the need to talk about anything. Hand tight.


Greg
ImageFather/Caregiver to beautiful 25 y/o daughter with mCRC Stg 4

Lydia666
Posts: 676
Joined: Sat Jun 06, 2015 6:50 pm
Location: Montreal, Canada

Re: Bad News From Doc

Postby Lydia666 » Fri Nov 27, 2015 11:13 am

PJ, I want to say something but I don't know what. Big hug and wish you a good quality of life and perhaps a new treatment with renewed hope. xo
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
August 2016- DCIS and decided post prophylactic double mastectomy
May 2018 - clean CT
Sept 2018-clean scope
Devastation, total shock- oct 2018, invasion of peri mets
Dec 20 - 2 round of folfox
Mom to 4 & 7 yrs kids - at least i brought them to this level of independence.

User avatar
Crystald
Posts: 142
Joined: Thu Feb 26, 2015 1:50 pm

Re: Bad News From Doc

Postby Crystald » Fri Nov 27, 2015 12:51 pm

PJ, I don't know what to say but my heart is crying out NO!

Maybe the doc's can suggest something. I hope so.

Stay strong.
Age 58
DX Jul 2014 Stage IVb CRC metastatic, unknown primary, CEA 1826
Inoperable, Chemo for life
KRASwt
MSI: not tested
29 Jul 14 Port
30 Jul - 19 Jan 2015 Folfox (12 cycles) CEA 164.5
9 Feb 15 - 20 May Flofiri failed (6 cycles) CEA 417.0
17 Jul 15 - Initiated Vectibix CEA 555.5
17 Jul 2015 - 14 Jan 2016 Vectibix
8 Feb 2016 - 11 Apr 2016 Xeloda
26 Apr 2016 Hospice

DarknessEmbraced
Posts: 3362
Joined: Sat Nov 01, 2014 4:54 pm
Facebook Username: Riann Fletcher
Location: New Brunswick, Canada

Re: Bad News From Doc

Postby DarknessEmbraced » Sat Nov 28, 2015 12:51 pm

I'm sorry to hear this Peejay!*hugs* Wishing you all the best!
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

bitchslapped
Posts: 1524
Joined: Tue Sep 09, 2014 3:23 pm
Location: PNW/USA

Re: Bad News From Doc

Postby bitchslapped » Sat Nov 28, 2015 2:20 pm

PJ...Hope you are up to searching the forum re: genome sequencing, tumor testing, blood biopsy etc. in prep for your Tues. appt. Don't see any KRAS or MSS in your sig. Lots of fun reading here. :wink:

viewtopic.php?f=1&t=49467&p=406752&hilit=clinical+trial+list#p406752

Some general helpful info on clinical trials here:

viewtopic.php?f=1&t=50424&p=386604&hilit=clinical+trial+list#p386604

Wish we had a "sticky" thread for some of these things, but we don't.
It's ok to challenge your doc in looking outside the box a little bit, afterall...

Best Wishes
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

Sams wife
Posts: 749
Joined: Sun Jan 11, 2015 2:49 pm

Re: Bad News From Doc

Postby Sams wife » Sat Nov 28, 2015 8:34 pm

I knew someone would bring some good ideas. (BS)
Husband dx 1/13/15 St.2 CEA 7.1
Chemo/25rad 2/15 till 4/24/15
5FU/leucovorin
Surgery 6/8/2015 Stage IIa T3N0MX microscopic cancer left
Watching 4 lung spots
0/5 lymph nodes. Lap. APR
25% less 5FU/leucovorin 7/14/2015 x 26 CEA 3.4
25% more 5fu 9/2015
9/16/15 CEA 7.7
1/16/16 @ 9.2 during allergy?
3/16 New lung spot 4x4 mm
6/16 CEA 6.9 spot 5x5

PEEJAY
Posts: 54
Joined: Thu Aug 27, 2015 2:28 am

Re: Bad News From Doc

Postby PEEJAY » Sun Nov 29, 2015 10:12 pm

Wow, thanks for the outpour guys! I took a few days off to get my head around the news. All of this is just lovely to come back through and there are a ton of good ideas here for me to get looking into!
Age 33
Stage 4 CC with 20+ mets to liver 1/20/2015
8 Rounds Folfoxiri feb - april 2015
Colon Resection 5/2015
Permanent Colostomy
Peritoneal Carcinoma found
Folfiri + Erbitux 6/2015 - 9/2015
Angiomapping for Y90 9/24/2015
Y90 Treatment 10/13/2015
Power port re-placing sched. 10/23/2015
Due back for chemo 10/29/2015 (right before trick or treating!!!)
11/26 Chemo not working
My colon cancer podcast "I'm Dying Here" in iTunes: https://itunes.apple.com/us/podcast/im- ... 1035722798


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