If you've had peri mets -- did you have any symptoms?

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lpas
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If you've had peri mets -- did you have any symptoms?

Postby lpas » Sun Oct 11, 2015 9:17 pm

I know I shouldn't be thinking this way, but tomorrow is the CT scan my urologist ordered (to further investigate the blood in my urine) and my mind has been going to dark places. So with that said...if you've been diagnosed at some point with peri mets, did you notice any symptoms? Did your CEA (or any other tumor markers) rise? Did they show up on CT or PET?

Thanks so much
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

ieowi
Posts: 202
Joined: Mon Jul 27, 2015 1:27 am

Re: If you've had peri mets -- did you have any symptoms?

Postby ieowi » Sun Oct 11, 2015 9:25 pm

the only thing i can mention her taking from our chemothology ( Onc. ), he mentioned that mets are to small to contribute to the CEA thats why your Dad CEA was going down as the big tumor is responding but not the mets, too small to be seen
Father 58 yo , Colon cancer IV + 4 Lymph. 7/2015
K-ras Mutant,GNAS,FBXW7,PIK3CA, MSI-low
4 cycles irinotecan+FU5
developed abdominal met + lung met...Failed
4 cycle Oxaliplatin+folfox. peri met growing...Failed
unofficial trial !!!

Robinf
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Location: WA

Re: If you've had peri mets -- did you have any symptoms?

Postby Robinf » Sun Oct 11, 2015 9:51 pm

I have peri mets, have no symptoms. Some have been too small to be seen on a scan, others have been visible. My CEA isnt a good marker for me. Good luck with your scan.
Dx stage 4 Sept 2014 (MSS, KRAS Mutant)
Resection with peri mets identified visually during surgery
Nothing visible on CT
12 rounds FOLFOX w/ Avastin Nov - Apr 2015
Still nothing visible on CTs
HIPEC May 2015
7/2015 - 5 new spots on CT, PET confirmed 3 mets
8/12/15-Begin 12 rounds FOLFIRI
10/21/15 Scan - peri mets stable, 1 liver stable and 1 growing
12/4/15 - RFA of liver met
2/24/16 - scan was stable/shrinking moving to Xeloda/Avastin

CM35
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Re: If you've had peri mets -- did you have any symptoms?

Postby CM35 » Sun Oct 11, 2015 9:59 pm

I've had/have peri mets. No symptoms whatsoever. Mine have always been in my pelvis. Ranging in size from sub-cm nodules to a 9 cm ovarian met. Never had any pain or any other issues. Most have been picked up on ct, except those that were involved with adhesions, and they were very small. My CEA is very sensitive. When my cancer is growing, regardless of location, it goes up. I know how stressful scanxiety is, hang in there... Hopefully it's nothing!
stg IV 4/2013 @34 - liver, ovary/peritoneum
Lots of chemo, surgery and good luck - still doing well 03/2016...

Lee
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Re: If you've had peri mets -- did you have any symptoms?

Postby Lee » Sun Oct 11, 2015 10:09 pm

lpas wrote:Ibut tomorrow is the CT scan my urologist ordered (to further investigate the blood in my urine) and my mind has been going to dark places. So with that said...

Thanks so much


OK. Blood in urine is a different story. Recently, I was suppose to have blood in my urine also. Bladder infection?? A PA was ready to send me to a specialist regarding my "bladder cancer" when I said, I want my PC Dr involved. He did a urine test and said I was fine. No blood, no infection. When I asked what happened between yesterday with the PA and today, no infection, he said that is the difference between a PA and an MD. PA did a dip stick test, an MD looks at the actual urine and separates the good bacteria from the bad.

Hope it is that way for you too. (((HUGS))) to you.

Lee
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!

ronnieciao
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Location: Northern Italy and UK

Re: If you've had peri mets -- did you have any symptoms?

Postby ronnieciao » Mon Oct 12, 2015 6:08 am

Hi Ipas,

I can pass on my mother's experience with peri mets- they caused her ascites so it was very obvious. Also her CA 19-9 was VERY elevated (i think about 1800-ish)

Chemo killed them off and her CA 19-9 was normal last time they check it. Ascites is no longer there. Her CEA is still elevated because of her liver mets it seems.

Also, when she had a LAR resection they could not see any traces of them, and also in the pathology. Surgeon and oncologist were stunned.

I hope this reassures you a little bit.

Veronica
DD of Mum, 53
Diagnosed CC Stage IVb, October 2014
Mets to liver, peri, ovaries, bones
Folfox + Panitumumab
5fu+Panitumumab
Folfiri + Avastin
Cetuximab monotherapy
Immunotherapy: Tecenriq (Atezolizumab) single agent trial: failed
Left us Feb 2017

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GrouseMan
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Location: SE Michigan USA

Re: If you've had peri mets -- did you have any symptoms?

Postby GrouseMan » Mon Oct 12, 2015 8:01 am

4 weeks ago peri mets showed up in my wife's latest CT scan. Prior scan 3 months earlier they were not visible, and she had been stable for about a year on her 5-FU/Avastin maintenance therapy. She gets that every three weeks. However her CEA had started to slowly climb between these scans from 2.3 to now 5.4 so her CEA actually did show something going on. Other than that no other symptoms. Today she starts FOLFIRI and Avastin I think. We will see if this session of Whack a Mole is effective to knock things down again. Her Liver Mets continue to show no additional growth. The spots on her lungs continue to do nothing at all for going on 28 months (Likely not mets), and the Spleen met is still no longer visible. We hope she responds well to the FOLFIRI and that she tolerates that as well as she had FOLFOX/Avastin and then just 5-FU Avastin.

GrouseMan
DW 53 dx Jun 2013
CT mets Liver Spleen lung. IVb CEA~110
Jul 2013 Sig Resct
8/13 FolFox,Avastin 12Tx mild sfx, Ongoing 5-FU Avastin every 3 wks.
CEA: good marker
7/7/14 CT Can't see the spleen Mets.
8/16/15 CEA Up, CT new abdominal mets. Iri, 5-FU, Avastin every 2 wks.
1/16 Iri, Erbitux and likely Avastin (Trial) CEA going >.
1/17 CEA up again dropped from Trial, Mets growth 4-6 mm in abdomen
5/2/17 Failed second trial, Hospitalized 15 days 5/11. Home Hospice 5/26, at peace 6/4/2017

Lydia666
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Re: If you've had peri mets -- did you have any symptoms?

Postby Lydia666 » Mon Oct 12, 2015 9:43 am

lpas wrote:I know I shouldn't be thinking this way, but tomorrow is the CT scan my urologist ordered (to further investigate the blood in my urine) and my mind has been going to dark places. So with that said...if you've been diagnosed at some point with peri mets, did you notice any symptoms? Did your CEA (or any other tumor markers) rise? Did they show up on CT or PET?

Thanks so much

Lpas, i doubt blood in urine is a symptom of peri mets. Try as much as possible to convince yourself this is not cancer related. You have nothing until a doc says so. I'm trying to do the same with my lung micronodule. But seriously, it does not sound as peri mets.
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.

DarknessEmbraced
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Re: If you've had peri mets -- did you have any symptoms?

Postby DarknessEmbraced » Mon Oct 12, 2015 10:05 am

Good luck with your scans Ipas!*hugs* I know scanxiety all too well. It's hard for me to pull my mind away from going to dark places.*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! :)

CLD
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Re: If you've had peri mets -- did you have any symptoms?

Postby CLD » Mon Oct 12, 2015 1:46 pm

Does anyone know if there are certain features of one's colon cancer that makes it more likely to spread to peritoneum? For example, colon travels to liver, rectal to lungs... The fear of peritoneal spread keeps me up at night because it seems like there are less options for this spread.
Wife to DH/ Father of 6 (age 42 at dx) diagnosed Jan 2015 stage IIIC
Tumor deposit in mesentery 13/24 lymph nodes +
CEA at dx: 5
MSS
Low Grade/Mod. Diff.
FOLFOX 6 months
N.E.D until June 2018
PET Scan 6/18
Biopsy confirms cancer in 3 Paraaortic lymph nodes
Folfiri + Avastin (6tx) and Xeloda during radiation
Cancer all over both lungs dx Jan 2019
FOLFIRI +AVASTIN presently

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GrouseMan
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Location: SE Michigan USA

Re: If you've had peri mets -- did you have any symptoms?

Postby GrouseMan » Mon Oct 12, 2015 2:59 pm

I think its a matter of the colon tumor penetrating outside the colon. My wife's had already penetrated into the mesentery I believe and as a result there is the potential I think to have peri mets. When she was resected, they didn't see any but 25 months post surgery the peri mets finally got big enough to see in a CT scan. Funny thing is the 5-FU/Avastin maintenance was holding the Liver and Spleen mets stable. No new growth there! We hope the FOLFIRI/Avastin every other week will clobber these. My wife's cancer was pretty advanced when diagnosed. But after resection of her primary she has tolerated Chemotherapy very well. I was expecting the worse when they switch was made to Irinotecan but she said today after her first infusion with it that its no worse than what she has been going through so far. Everyone makes it sound so much worse than FOLFOX. She complained more about being hungry than anything else as they didn't have their act together today at the clinic and were very late getting her started today.

I suspect as with everything else concerning this disease everyone is going to have different times/locations of recurrence or METS, and react differently to the drugs. YMMV

GrouseMan
DW 53 dx Jun 2013
CT mets Liver Spleen lung. IVb CEA~110
Jul 2013 Sig Resct
8/13 FolFox,Avastin 12Tx mild sfx, Ongoing 5-FU Avastin every 3 wks.
CEA: good marker
7/7/14 CT Can't see the spleen Mets.
8/16/15 CEA Up, CT new abdominal mets. Iri, 5-FU, Avastin every 2 wks.
1/16 Iri, Erbitux and likely Avastin (Trial) CEA going >.
1/17 CEA up again dropped from Trial, Mets growth 4-6 mm in abdomen
5/2/17 Failed second trial, Hospitalized 15 days 5/11. Home Hospice 5/26, at peace 6/4/2017

chrisin
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Re: If you've had peri mets -- did you have any symptoms?

Postby chrisin » Mon Oct 12, 2015 6:20 pm

CLD wrote:Does anyone know if there are certain features of one's colon cancer that makes it more likely to spread to peritoneum? For example, colon travels to liver, rectal to lungs... The fear of peritoneal spread keeps me up at night because it seems like there are less options for this spread.


Sorry to say that but a satellite tumor deposit in mesentery looks like the peritoneal spread. I may be wrong though.
care giver to mom 68 y/o
2002: right breast cancer stage II 2cm, 4/19 ln,
mastectomy
chemo: 4xdox+4xtax+4xcmf
2013: left bc stage I 1 cm, lymph nodes clear,
mastectomy, tamoxifen
8/15 sigmoid colon cancer stage IV,
5 cm, unresectable/fixed to the wall,
kras mut codon 13
lvr met 13 mm, peritoneal carcinomatosis, CEA 1440
8/15 folfiri started
10/15 CEA 1071 switched to folfox

CLD
Posts: 206
Joined: Fri Mar 27, 2015 7:16 pm

Re: If you've had peri mets -- did you have any symptoms?

Postby CLD » Mon Oct 12, 2015 7:11 pm

chrisin wrote:
CLD wrote:Does anyone know if there are certain features of one's colon cancer that makes it more likely to spread to peritoneum? For example, colon travels to liver, rectal to lungs... The fear of peritoneal spread keeps me up at night because it seems like there are less options for this spread.


Sorry to say that but a satellite tumor deposit in mesentery looks like the peritoneal spread. I may be wrong though.

Chrisin,
pathology report specifically says "nonperitonealized" area of mesentery. I would agree with you though, and have spent countless hours trying to figure this out online. Oncologist and surgeon were never very helpful or thorough in their explanations when I asked these specific questions. After 10 months I am still not fully understanding this.
Wife to DH/ Father of 6 (age 42 at dx) diagnosed Jan 2015 stage IIIC
Tumor deposit in mesentery 13/24 lymph nodes +
CEA at dx: 5
MSS
Low Grade/Mod. Diff.
FOLFOX 6 months
N.E.D until June 2018
PET Scan 6/18
Biopsy confirms cancer in 3 Paraaortic lymph nodes
Folfiri + Avastin (6tx) and Xeloda during radiation
Cancer all over both lungs dx Jan 2019
FOLFIRI +AVASTIN presently

Val*pal
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Facebook Username: Valerie Barkus Kantner
Location: Metro Detroit, Michigan

Re: If you've had peri mets -- did you have any symptoms?

Postby Val*pal » Tue Oct 13, 2015 4:50 pm

I know this is hard advice to follow, but if I were you I would not waste my mental energy on worrying about peritoneal mets when you have no idea whether you have them or not.

It's true that there are rarely any symptoms until much later in the advancement of the cancer spread regarding peritoneal involvement. My husband had them, and he had no symptoms of them until the last 6 months - then he had bloating, mild discomfort, and ascites. He certainly never had blood in his urine, however!

My husband was told from the get-go that it was likely he would have mets in the peritoneum since his colon tumor broke through the colon wall before he was diagnosed. The onc did not say it was 100% likely, but eventually they found evidence in the CTs. I think it took at least 16-18 months after his surgery before the oncologist stated they were there definitively. As someone else noted, they don't show up on CTs for a long time. My husband's CEA began to rise a bit around the time they saw the peritoneal mets. It is a tough place to see the cancer spread to. Sadly, chemo is not as effective on the peri mets as it is on liver/lung tumors.

Good luck! I know how hard it is not to obsess about things. :D
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

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NZJay
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Location: NZ

Re: If you've had peri mets -- did you have any symptoms?

Postby NZJay » Tue Oct 13, 2015 4:57 pm

Val*pal wrote:My husband was told from the get-go that it was likely he would have mets in the peritoneum since his colon tumor broke through the colon wall before he was diagnosed. The onc did not say it was 100% likely, but eventually they found evidence in the CTs. I think it took at least 16-18 months after his surgery before the oncologist stated they were there definitively. As someone else noted, they don't show up on CTs for a long time.


Ugh! As a fellow T4-er, they said peri mets are more likely than if I were a T3 case, but still gave me a 70%-ish chance for cure.

So hopefully your husband's onc was a pessimist and mine is a realist :wink:
11-13 Dx CC
SPS T4b(touched stomach organ),N1(3/23),M0(Stage 3B)
11-13: resect + partial gastrect
2-14: 1 Tx Cape + Oxy; renal failure, colitis
4-14: 7 Tx Capecitabine
1-15: clear CT
7-15: clear scope
1-16: clear CT
3-17: clear CT
10-17: clear scope (5 year gap now!)
CEA@dx: 8.4 / 6-15: 4.0 / 10-15: 4.2 / 2-16: 4.9 / 7-16: 4.9 / 11-16: 5.0 / 6-17: 4.5
NED since resection


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