Inoperable Stage IVs

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Scaredoutofmind
Posts: 60
Joined: Fri Mar 13, 2015 7:24 pm
Facebook Username: Ilene Mastrangelo

Inoperable Stage IVs

Postby Scaredoutofmind » Sun Oct 18, 2015 11:03 am

Question, how many of you stage IVs were deemed inoperable? Why were you deemed inoperable? Did you seek additional opinions? What has your treatment been and how long has it been?

Thanks

Joannerogers
Posts: 260
Joined: Tue Jun 16, 2015 4:50 pm

Re: Inoperable Stage IVs

Postby Joannerogers » Sun Oct 18, 2015 11:46 am

So far I'm considered inoperable due to the location of my tumors. I have 3 3mm tumors practically on top of my portal vein, my onc is looking for a surgeon who can do it . But so far we are waiting .
53yo married 27 years, 2 children, 24 and 25
Diagnosed april 23,2015 rectosigmoid
Starting CEA 1845
Port placement and liver bx April 27
Folfox started april 29
Avastin added on May 6
Stage IV crc with mets to 50% of liver

10/13/15 dc'd transfusion #12...toxic
Pet/ct scan on 11/3/15
20% liver resected all margins clear 11/30/15
8/18/15 cea 21.
9/15/15 cea 13.9
10/13/15 cea 14.4
1/22/2016 cea 2.5
LAR 02/15/16 all clear

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Bev G
Posts: 5856
Joined: Thu Jan 07, 2010 11:19 pm
Facebook Username: Bev Golde
Location: Quechee, VT

Re: Inoperable Stage IVs

Postby Bev G » Sun Oct 18, 2015 12:33 pm

Joannerogers wrote:So far I'm considered inoperable due to the location of my tumors. I have 3 3mm tumors practically on top of my portal vein, my onc is looking for a surgeon who can do it . But so far we are waiting .


Hi Joanne,

If you haven't already done so, please seek the opinion of a liver TRANSPLANT surgeon. They deal with potentially tricky vascular issues all the time. My liver resection was done more than 5 years ago by a UPMC trained transplant surgeon. My tangerine sized tumor was about 2 mm from my IVC and hepatic artery in my posterior caudate lobe. AWFUL location, My "top gun" surgeon saved my life and I believe didn't even break a sweat doing it. If you are anywhere near Pittsburgh, maybe call him: Ngoc Thai.

HTH,

Bev
58 yo Type1 DM 48 years
12/09 Stage IV 2/22 nodes + liver met, colon resec
3 tx FOLFIRI, liver resec 4/10
9/10 6 mos off chemo, Neg PET&CTC CEA nl
2/11 finished total 10 rounds chemo

9/13 ^17th clean PET/CT NED for now

jalusa
Posts: 221
Joined: Thu Apr 02, 2015 9:26 am

Re: Inoperable Stage IVs

Postby jalusa » Sun Oct 18, 2015 2:32 pm

I am currently inoperable. I went to Memorial Sloan Kettering for the HAI pump. My liver tumors are now showing some shrinkage that they did not with systemic chemo. I am hoping to get to resection.
Hoping to get to resection with HAI pump.
Failed PVE - Searching for options
Chemo for life

stu
Posts: 1472
Joined: Sat Aug 17, 2013 5:46 pm

Re: Inoperable Stage IVs

Postby stu » Sun Oct 18, 2015 2:35 pm

Hi.
My mum was initially inoperable due to tumour load. Chemo allowed her to get a liver resection. A recurrence deemed her inoperable again and concern was raised this time to the tumour being located near a blood vessel. Chemo again this time a referral to a surgeon familiar with liver transplants and this has given her four years treatment free. Her oncologist wanted to keep her on chemo but a request for a surgical opinion by her changed treatment approach and outcomes.
Hope this helps.
Stu
supporter to my mum who lives a great life despite a difficult diagnosis
stage4 2009 significant spread to liver
2010 colon /liver resection
chemo following recurrence
73% of liver removed
enjoying life treatment free
2016 lung resection
Oct 2017 nice clear scan . Two lung nodules disappeared
Oct 2018. Another clear scan .

musicluvr
Posts: 91
Joined: Fri Feb 21, 2014 8:07 pm
Location: Grand Rapids MI

Re: Inoperable Stage IVs

Postby musicluvr » Sun Oct 18, 2015 5:16 pm

Inoperable due to multiple mets on both lungs. See Onc Tuesday to see if RFA is an option, otherwise chemo for life.
58 yo female
Dx CRC 2/17/14
perm colostomy 3/14
12 rounds 5FU
Small bowel obstruction 8/14
Multiple nodules both lungs 6/15
FOLFIRI + ERBITUX started 8/11/15
Irinotecan reduced 40% , October
12/15 NED, holiday next 2 treatments, then 5FU only
Mets are back 3/16
Erbitux + Irinotecan only; dropping 5FU
CT Scan 6/16 shows mets still there
5/17 been on Erbitux only
chemo break for 3 months
5 mets now on CT Scan. Back to Erbitux
1/18 lung Mets all increased slightly
Adding Irinotecan back

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

Re: Inoperable Stage IVs

Postby midlifemom » Sun Oct 18, 2015 6:30 pm

musicluvr wrote:Inoperable due to multiple mets on both lungs. See Onc Tuesday to see if RFA is an option, otherwise chemo for life.


Is your onc determining if rfa is an option? Or an interventional radiologist?
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?

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

Re: Inoperable Stage IVs

Postby Crystald » Sun Oct 18, 2015 10:04 pm

Two of the largest tumors in my liver are "joined", there is nothing available to re-sect, so I have been told.
Chemo for life.
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

sjring
Posts: 181
Joined: Mon Jun 30, 2014 3:16 pm
Location: Philadelphia, PA

Re: Inoperable Stage IVs

Postby sjring » Mon Oct 19, 2015 10:16 am

I was deemed inoperable because of the number of liver mets and that they were in both lobes. I am chemo for life. I do 5-FU and Avastin and switch back and forth between adding back in the Oxili depending on what's going on. The liver mets are no longer visible on scan and has remained that way, however I have other spots where the mets are popping up and going away and popping back up.
50 YO Husband & father of 2 teenagers.
DX 9/9/13 Stage 4 cc (at age 48)
16 Rounds FOLFOX + Avastin (Oct-13 to May-14)
Maintenance chemo - Avastin & 5-FU infusions (Jun-14 to Jul-15)
Jul-15: Mets to lymph nodes, resuming FOLFOX
Sep-15: MRI showed stability, back to maintenance chemo.

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chrissyrice
Posts: 1171
Joined: Thu Sep 23, 2010 8:44 am
Location: Atlanta, Georgia

Re: Inoperable Stage IVs

Postby chrissyrice » Mon Oct 19, 2015 1:37 pm

Inoperable due to mets in the abdominal aortic artery.
DX 10-31-09 Surgery 12-1-09 Sigmoid Colon
Stage IIIb T3,N2,MX; Chemo Feb 2010-Aug 2010; 4 rounds Folfox; 8 rounds 5FU +LV
12/2010 PET/CT Scan, Cancer Free
7/2012 CT Scan NED 2 years
10/2013 NED 3 years
8/2014 NED 4 years
Recurrence 6/2015: iliac lymph node(s)
8/2015 Surgery: 3 cm tumor removed+iliac artery graft
3/2016 CT Scan Stable
6/2016 Stable
9/2016 Stable
12/2016 Stable
3/2017 Stable
Recurrence 6/2017
12/2017 Surgery removed all cancer w/ clean margins
07-27-2018 Cancer-free for 7 months

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

Re: Inoperable Stage IVs

Postby ieowi » Mon Oct 19, 2015 1:43 pm

Dad inoperable due too tumors in lymphnode, and mets in abdominal wall, seeking possible trials, currently doing cms test to see if other medication available, similar too( nci-match )
Last edited by ieowi on Wed Oct 21, 2015 2:00 pm, edited 1 time in total.
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 !!!

Joannerogers
Posts: 260
Joined: Tue Jun 16, 2015 4:50 pm

Re: Inoperable Stage IVs

Postby Joannerogers » Mon Oct 19, 2015 8:55 pm

Bevg, yes my onc is pressing for a transplant surgeon at vandy to do it. I'll have a repeat scan on October 3 , we will send it to vandy and see if he can do it. I'm sure there will be a fight with the insurance company to get it done at vandy.
53yo married 27 years, 2 children, 24 and 25
Diagnosed april 23,2015 rectosigmoid
Starting CEA 1845
Port placement and liver bx April 27
Folfox started april 29
Avastin added on May 6
Stage IV crc with mets to 50% of liver

10/13/15 dc'd transfusion #12...toxic
Pet/ct scan on 11/3/15
20% liver resected all margins clear 11/30/15
8/18/15 cea 21.
9/15/15 cea 13.9
10/13/15 cea 14.4
1/22/2016 cea 2.5
LAR 02/15/16 all clear

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exaussie
Posts: 618
Joined: Sun Jan 19, 2014 1:19 am
Location: Silverton OR
Contact:

Re: Inoperable Stage IVs

Postby exaussie » Wed Oct 21, 2015 9:48 am

son was inoperable due to distant lymph node invasion. Wasn't diagnosed until cancer had gone liver to lung to lymph nodes.
Went through 3 different chemos, took supplements, and lived life.
DS 26 yrs old diagnosed 6/13 T3N2aM1b
Resection 6/13
6 rounds chemo folfax
12/13 Fissure
hernia surgery 12/13
5 months break
Maintenance chemo 3/14
Crazy growth. Liver failing. Folfox and vectibex 7-29-14
Chemo failure Hospice 8/26
Left us 8/28

dudette
Posts: 106
Joined: Sat Oct 17, 2015 10:04 am

Re: Inoperable Stage IVs

Postby dudette » Sun Oct 25, 2015 9:14 am

I agree with Bev G. We here as the inoperable stage IVers need badass, top-gun, big balls surgeons.

So far I am deemed inoperable. However, this is only based on the opinion of a number of oncologists and radiologist.

I don't know why I haven't done this earlier but next week (28OCT) I'm speaking with someone from a liver surgery unit. And if they say inoperable, then I have to accept it. But until then it doesn't really matter what an oncologist/radiologist/GP or whoever thinks about it. Have they ever operated on a liver? No? Thank you. Next.
Temi
Dx 03/2015 @ age 41 - CC stage IV - pT3 N2b (14/29) cM1 (hep) L1 V1 Pn1 R1
Wild K-RAS, N-RAS, BRAF / MSS
unresectable mets liver 60% + lungs
Surgery
04/15 - sigmoid resect.
07/16 - hysterectomy (ovaries)
Chemo
05-06/15 - 4 x Folfirinox
12/15 - 02/16 4 x Xeliri + Avastin
03-05/16 9 x Xeloda
09-12/16 Folfiri + Cetuximab
01/2017 - metronomic chemo + methadone
July 20, 2107 - Temi has passed away.

BishB
Posts: 6
Joined: Sat Jan 31, 2015 2:36 pm
Location: London, UK

Re: Inoperable Stage IVs

Postby BishB » Sun Oct 25, 2015 2:53 pm

I'm inoperable because my colon primary tumour is in an awkward place to get out and have had three surgeons confirm this.
Dx Stage 4 CRC w. mets to liver, inoperable, 2014
FOLFOX with 5FU & Avastin, 2014
FOLFIRI with 5FU & Zaltrap, 2015
5FU & Zaltrap, 2015
20% progression
Start Erbitux only


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