It's Back. UPDATE next page
It's Back. UPDATE next page
Well, after nearly 4 years NED I learned, following my colonoscopy yesterday that there is a new mass, not near the anastomosis site but on the other side of the colon. This is my fourth colonoscopy since dx in 2011; the last scope was in 2013 so needless to say I am pretty devastated and stunned that something could grow that quickly. The phrase "Lynch Syndrome" was suggested. Any others with metachronous tumors? Any insights/words of wisdom? I was really hoping I could possibly get on with my life but now it looks like I'm back to square one.
Last edited by ktwmn on Fri Mar 27, 2015 3:19 pm, edited 1 time in total.
Dx 7/11, Stage IIIc CC
12 txs Folfox 8/2011-2/2012
MSS, KRAS-mut G12D
NED until 3/2015, mets to liver and peritoneum
April-December 2015: 15 txs folfiri+avastin
Liver mets resolved; pelvic met remains
January-May 2016: folfox+avastin; allergic rxn to oxi
June-August 2016: 5FU+avastin
October 2016: looking into immuno trial
January 2017: maintenance chemo xeloda + avastin
12 txs Folfox 8/2011-2/2012
MSS, KRAS-mut G12D
NED until 3/2015, mets to liver and peritoneum
April-December 2015: 15 txs folfiri+avastin
Liver mets resolved; pelvic met remains
January-May 2016: folfox+avastin; allergic rxn to oxi
June-August 2016: 5FU+avastin
October 2016: looking into immuno trial
January 2017: maintenance chemo xeloda + avastin
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Val*pal
- Posts: 860
- Joined: Sun Feb 10, 2013 1:24 pm
- Facebook Username: Valerie Barkus Kantner
- Location: Metro Detroit, Michigan
Re: It's Back.
I am so sorry to hear this. Though I have no advice, know that you are in my thoughts.
DH dx'ed May '11, age 62
Jul '11: resection Stage IV
10/11: 6 mo Folfox
8/12:thyr canc, surg/tx
2/13: peri mets
2/13: Firi/Avas
6/13: Ok
8/13: break
10/13: Lung, peri, mets
10/13: Firi/Erb
1/14: Erb Fail; spread
5/14: Tx stopped
6/20/14: At rest
Jul '11: resection Stage IV
10/11: 6 mo Folfox
8/12:thyr canc, surg/tx
2/13: peri mets
2/13: Firi/Avas
6/13: Ok
8/13: break
10/13: Lung, peri, mets
10/13: Firi/Erb
1/14: Erb Fail; spread
5/14: Tx stopped
6/20/14: At rest
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purplekangaroo
- Posts: 88
- Joined: Tue Feb 24, 2015 6:08 am
- Location: England
Re: It's Back.
I am so sorry to hear your news. What a blow, 4 yrs out then this - a shock I imagine.
I have no words of advice but wanted you to know you are in my thoughts.
I have no words of advice but wanted you to know you are in my thoughts.
LAR 29/10/13
Leak, temp ileo 5/11/13
Stage 3cc aged 31 4\20 nodes
6 months xelox 24/12/13
1 clear CT 5/7/14
Genetic test negative for lynch
Ileo reversed 18/11/14
Colonoscopy 6/2/15 normal
Second CT 6/2/15 ??
Trying to resume some sort of normality??
Leak, temp ileo 5/11/13
Stage 3cc aged 31 4\20 nodes
6 months xelox 24/12/13
1 clear CT 5/7/14
Genetic test negative for lynch
Ileo reversed 18/11/14
Colonoscopy 6/2/15 normal
Second CT 6/2/15 ??
Trying to resume some sort of normality??
Re: It's Back.
My initial post on this forum was an OP with the same thread title. It's treatable, so here we go. Kicked its BUTT once, we'll do it again!
Dec 07 50 y/o 'scope dx CRC
Jan 08 surgery took 7" colon 7" in. T1N0M0 NED
09-13 'scopes NED
Nov 14 CT thumb sized mass near surgery outside colon
Dec 14 PET, biopsy dx malignant, no mets
Jan/Feb 15 25X Xeloda, radiation
4/9 LAR, perm. ostomy, cancer remaining?
5/22 start 8X XELOX
NED
Jan 08 surgery took 7" colon 7" in. T1N0M0 NED
09-13 'scopes NED
Nov 14 CT thumb sized mass near surgery outside colon
Dec 14 PET, biopsy dx malignant, no mets
Jan/Feb 15 25X Xeloda, radiation
4/9 LAR, perm. ostomy, cancer remaining?
5/22 start 8X XELOX
NED
Re: It's Back.
the only good part about this is you know the road ahead. You've learned so much in the past 4 years and really that is a big part of the struggle. You know what's coming (scary yes but soothing also). Keep your chin up.
2012
Feb - Stage 2 (T3 N0 M0) CC @ 30
Mar - R hemicolectomy, 18 LN
May-Nov 6 - Chemo (8 Xeloda)
2013
Feb - NED
2014
Feb - NED
May - Stage 4 - 1 liver met @ 32
Jun - Liver resection
Oct - CLEAN SCAN
Aug-Jan - FOLFOX 5 rounds, 5FU X 6
2015
Ap, Oct - NED
2016
Mar - NED
Feb - Stage 2 (T3 N0 M0) CC @ 30
Mar - R hemicolectomy, 18 LN
May-Nov 6 - Chemo (8 Xeloda)
2013
Feb - NED
2014
Feb - NED
May - Stage 4 - 1 liver met @ 32
Jun - Liver resection
Oct - CLEAN SCAN
Aug-Jan - FOLFOX 5 rounds, 5FU X 6
2015
Ap, Oct - NED
2016
Mar - NED
Re: It's Back.
Well, that certainly sucks. I'm so sorry you're having to deal with this again. Do you know if your original tumor was micro-satellite stable or unstable? It certainly does sound as though Lynch could be coming into play with your previously diagnosed ovarian cancer. Are they testing you now? My colorectal surgeon talked about removing the majority of my colon as a preventative measure if my Lynch test had come back positive (it didn't).
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 & celecoxib
2/19 clean scope
11/19 clean CT
Ongoing cimetidine & other targeted supplements
Mom to a 6 & 8yo
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 & celecoxib
2/19 clean scope
11/19 clean CT
Ongoing cimetidine & other targeted supplements
Mom to a 6 & 8yo
Re: It's Back.
THanks for your kind thoughts, everybody. lpas: I've not been tested for Lynch but perhaps when I meet with my oncologist we will discuss this. On my original pathology report the only thing stated about MSI was "MSI-MMR: Present."
Dx 7/11, Stage IIIc CC
12 txs Folfox 8/2011-2/2012
MSS, KRAS-mut G12D
NED until 3/2015, mets to liver and peritoneum
April-December 2015: 15 txs folfiri+avastin
Liver mets resolved; pelvic met remains
January-May 2016: folfox+avastin; allergic rxn to oxi
June-August 2016: 5FU+avastin
October 2016: looking into immuno trial
January 2017: maintenance chemo xeloda + avastin
12 txs Folfox 8/2011-2/2012
MSS, KRAS-mut G12D
NED until 3/2015, mets to liver and peritoneum
April-December 2015: 15 txs folfiri+avastin
Liver mets resolved; pelvic met remains
January-May 2016: folfox+avastin; allergic rxn to oxi
June-August 2016: 5FU+avastin
October 2016: looking into immuno trial
January 2017: maintenance chemo xeloda + avastin
Re: It's Back.
So very sorry. I am sure it would be devastating to think this is behind you for so long and then have a recurrence. If it is only in the colon hopefully they can treat it again. Try to stay strong.
Cathy
Diagnosed 10/14 low rectal cancer age 43
Clinical T2NXMX
Radiation/xeloda 12/14-1/15
LAR with temp Ileo 3/15
pT2N0M0, lymphatic invasion 0/37 nodes
4 xelox, 1 xeloda only
Reversal 9/15
Mom to 9&11 year olds
Diagnosed 10/14 low rectal cancer age 43
Clinical T2NXMX
Radiation/xeloda 12/14-1/15
LAR with temp Ileo 3/15
pT2N0M0, lymphatic invasion 0/37 nodes
4 xelox, 1 xeloda only
Reversal 9/15
Mom to 9&11 year olds
Re: It's Back.
Sorry to hear this and hope it's something that can be beat down and not take too much out of you. You have certainly had your share of shit. Pun intended.
Good luck,
Allen
Good luck,
Allen
Dx 8/23/11 stage 3b crc
3 of 11 LN's
resection 9/15/11
folfox start 10/31/11 12 sessions
De-ported 6/2012
clear CT 7/2012
Clear colonoscopy 9/2012
3 of 11 LN's
resection 9/15/11
folfox start 10/31/11 12 sessions
De-ported 6/2012
clear CT 7/2012
Clear colonoscopy 9/2012
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DarknessEmbraced
- Posts: 3817
- Joined: Sat Nov 01, 2014 4:54 pm
- Facebook Username: Riann Fletcher
- Location: New Brunswick, Canada
Re: It's Back.
I'm so sorry to hear this! 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
Clear 5 year scans 11/21/19- Considered cured!
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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Steph20021
- Posts: 553
- Joined: Sat Dec 27, 2014 4:58 pm
- Location: Ontario, Canada
Re: It's Back.
I hope this can be nipped in the bud. What's being suggested for treatment? Surgery and then chemo?
All the best.
All the best.
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
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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michelle c
- Posts: 1929
- Joined: Wed Dec 02, 2009 3:58 am
Re: It's Back.
So sorry to hear this. I hope that you get a plan in place real soon to beat it again. How did they find the tumor during your colonoscopy if it was on the other side of the colon?
May 25 2009 Dx with CC (sigmoid colon) 2 days after my 44th b'day
CEA prior to surgery 4.7
Jun 3 2009 LAR - Stage III 3/10 lymph nodes
Jul 6 - Dec 10 2009 - 12 cycles FOLFIRI
Genetic testing - inconclusive for Lynch
Jul 2012 port removed & hernia repair
CEA prior to surgery 4.7
Jun 3 2009 LAR - Stage III 3/10 lymph nodes
Jul 6 - Dec 10 2009 - 12 cycles FOLFIRI
Genetic testing - inconclusive for Lynch
Jul 2012 port removed & hernia repair
Re: It's Back.
ktwmn wrote:THanks for your kind thoughts, everybody. lpas: I've not been tested for Lynch but perhaps when I meet with my oncologist we will discuss this. On my original pathology report the only thing stated about MSI was "MSI-MMR: Present."
Huh, that's not very clear, is it. Seems like "present" could be interpreted two different ways--to mean that instability is present or that the mismatch repair gene is present. I'd definitely try to get some clarification from the oncologist and if it turns out there was instability last time around, I'd request to get the Lynch testing ASAP so you can hopefully get the results back before your surgery. Good luck and, again, so sorry you're having to deal with this!
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 & celecoxib
2/19 clean scope
11/19 clean CT
Ongoing cimetidine & other targeted supplements
Mom to a 6 & 8yo
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 & celecoxib
2/19 clean scope
11/19 clean CT
Ongoing cimetidine & other targeted supplements
Mom to a 6 & 8yo
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Nik Colon
Re: It's Back.
I got tested right away with out asking because my age, then talked to a genetics person to see about further testing which they figured I didn't need. Mine was negative. You could ask if they tested and what for.
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