Stage IV, what happens after surgery?

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Tdubz
Posts: 149
Joined: Sun May 07, 2017 11:01 am

Stage IV, what happens after surgery?

Postby Tdubz » Wed Apr 24, 2019 10:16 am

I was previously stage 3 and after surgery did 11 rounds of folfox. I was NED for 2 yrs and then a met showed up on my liver. I had surgery to remove the met last week. My oncologist said I would not have to do chemo. Is that normal? I was offered a clinical trial, but that depends on if I have CTDNA (circulating tumor dna) or not. I have a blood test scheduled but if the results come back negative, then they are just going to monitor me. I’m somewhat relieved that I don’t have to do chemo, but I’m also a bit worried at the same time. What kind of treatments did you have being stage 4 after all cancer had been surgically removed?

kandj
Posts: 266
Joined: Sun Sep 27, 2015 11:29 am

Re: Stage IV, what happens after surgery?

Postby kandj » Wed Apr 24, 2019 11:10 am

DH had chemo before and after his liver resection. 6 months of adjuvent after the liver resection. He then had more chemo when he had a recurrence. He had radiation done, and then more chemo. And now he had a lung met removed. Chemo before and after that surgery too. Honestly, if I were you I would get a second opinion from a major cancer center like MDA or MSKCC or whatever is closest to you.
wife to DH, dx 8/15 stage IV @36, numerous unresectable liver Mets
resection and HAI placed 12/15
Liver resection 5/19/2016 15-20 mets removed (surgeon lost count, but it hopeful he got it all!)
Recurrence 7/2017 4 Liver mets and one possible lung met
Radiation on liver Mets 12/17
Lung met 10/18
VATS on lung met 11/18 started xeloda
Chemo break 6/19-11/19
New spot seen in lungs and adrenal gland 11/2019

Tdubz
Posts: 149
Joined: Sun May 07, 2017 11:01 am

Re: Stage IV, what happens after surgery?

Postby Tdubz » Wed Apr 24, 2019 12:35 pm

kandj wrote:DH had chemo before and after his liver resection. 6 months of adjuvent after the liver resection. He then had more chemo when he had a recurrence. He had radiation done, and then more chemo. And now he had a lung met removed. Chemo before and after that surgery too. Honestly, if I were you I would get a second opinion from a major cancer center like MDA or MSKCC or whatever is closest to you.


Thanks kandj, this is at MDA. That’s why I’m wondering if this is normal or not.

kandj
Posts: 266
Joined: Sun Sep 27, 2015 11:29 am

Re: Stage IV, what happens after surgery?

Postby kandj » Wed Apr 24, 2019 1:42 pm

Tdubz wrote:
kandj wrote:DH had chemo before and after his liver resection. 6 months of adjuvent after the liver resection. He then had more chemo when he had a recurrence. He had radiation done, and then more chemo. And now he had a lung met removed. Chemo before and after that surgery too. Honestly, if I were you I would get a second opinion from a major cancer center like MDA or MSKCC or whatever is closest to you.


Thanks kandj, this is at MDA. That’s why I’m wondering if this is normal or not.


Interesting. How often are they going to be doing scans?
wife to DH, dx 8/15 stage IV @36, numerous unresectable liver Mets
resection and HAI placed 12/15
Liver resection 5/19/2016 15-20 mets removed (surgeon lost count, but it hopeful he got it all!)
Recurrence 7/2017 4 Liver mets and one possible lung met
Radiation on liver Mets 12/17
Lung met 10/18
VATS on lung met 11/18 started xeloda
Chemo break 6/19-11/19
New spot seen in lungs and adrenal gland 11/2019

Brearmstrong
Posts: 90
Joined: Sun Mar 26, 2017 3:24 pm
Location: CT

Re: Stage IV, what happens after surgery?

Postby Brearmstrong » Wed Apr 24, 2019 1:57 pm

It tends to depend on different factors.. 1) your oncologist 2) your cancer center protocol 3) you threat of recurrence, where it was removed from, tumor mutations, etc. I know that MSKK told me that they don't offer any chemo if you are NED even if stage IV. My oncologist believes differently and believes I'm very high risk of recurrence so I'm on xeloda indefinitely. I would love to be here a few years from now and wondering if I can stop (assuming I'm still NED) but know that there is not much data on what's the right call to make.

I have read that many with just one liver met removed don't have follow up chemo. Best of luck to you and happy that they were able to remove it for you!
48 F Jan 17 2 sons
tumor appendix/colon
Muc Adeno 4cm
mod diff G2 T4aN2
nodes 8/50
CEA 4.6 after surgery <.05
KRAS G12D MSS
FOLFOX Apr-sep 17
Clean CT Jul 2017 lung 4mm, clean CT oct 17, CEA 3.4, nov 17 8.1. May 18 2.3,1.0,1.3, 1.3, 1.0, 2.3, 2.2, 2.1,2.2,1.6,1.4
Oct 2017 clean CT
Nov 17 PET para aortic nodes Stage IV
Folfori w/avastin Dec 17 CEA 7.1
May 18- surgery to remove nodes- 5 positive xeloda continues
Aug 18-CT NED Clear CT's Nov 18, Feb 19, May 19, Aug 19,Nov19

stu
Posts: 1249
Joined: Sat Aug 17, 2013 5:46 pm

Re: Stage IV, what happens after surgery?

Postby stu » Wed Apr 24, 2019 2:12 pm

Hi ,
My mum has never had post op chemo . Her oncologist believed at the time that he would only use it where there was visible disease .

The good news is she has only ever had 12 cycles for a stage 4 diagnosis and is here 10 years later . It has meant better quality of life for longer periods of time .

I guess it’s what works best for you as an individual.
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 .

Rikimaroo
Posts: 267
Joined: Tue Dec 20, 2016 8:48 pm

Re: Stage IV, what happens after surgery?

Postby Rikimaroo » Wed Apr 24, 2019 3:10 pm

Stu your mother’s journey is very encouraging. God Bless you Mum and May she continue to live a long life.

If your oncologist think you don’t need chemo maybe because of clear margins then you are good. These guys are very good at what they do. Continue to pray that God gives these doctors the knowledge to keep you NED.

Stay positive
RC T3N1M0 12/16
MSS - NRAS Mutation
Chemo Rad, CCR - W&W 5/2017
Recurrence 11/2017
CT Scan 11/2017 Liver Met 5.5cm Stable, Stage IV
Port Scheduled for 12/2017, folfox - avastin 12/2017
Blood Clot in Neck 1/2018, stop avastin, continue FolFox
LAR/Liver Resect 4/2018
Chemo Finish 8/2018
Reversal 10/18
CEA highest 500, lowest .8 throughout process, waiting for latest
Recurrence left seminal vescial/pelvic sidewall - 10/7/2019 resection surgery, perm bag, requested
FolFiri 11/6 - 5 rounds

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CRguy
Posts: 10085
Joined: Sun Feb 10, 2008 6:00 pm

Re: Stage IV, what happens after surgery?

Postby CRguy » Wed Apr 24, 2019 6:12 pm

Tdubz wrote:What kind of treatments did you have being stage 4 after all cancer had been surgically removed?

Basically same sitrep as me but mine was a lung met.
I had resection ( VATS ) followed by FOLFOX

My Onc basically called it "pseudo"adjuvant chemo and said its use was controversial even then ( 2010 )
BUTT we both decided to go for it.
I honestly have not kept up with the current views by Oncs on that topic ... BUTT it appears to have worked OK for me
:shock: still here in 2019 ! :mrgreen:

There are also so many other options regarding tumor biology, immunotherapies, personalized oncogenomics etc. available NOW
perhaps they have found full on classical chemo is not warranted in some cases.

Have that discussion with your docs and push HARD for some meaningful answers or consider another opinion.

Best wishes
CRguy
Caregiver x 4
Stage IV A rectal cancer/lung met
12 Year survivor
my life is an ongoing totally randomized UNcontrolled experiment with N=1 !
Review of my Journey so far

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juliej
Posts: 3080
Joined: Thu Aug 05, 2010 12:59 pm

Re: Stage IV, what happens after surgery?

Postby juliej » Wed Apr 24, 2019 7:25 pm

CRguy wrote:There are also so many other options regarding tumor biology, immunotherapies, personalized oncogenomics etc. available NOW
perhaps they have found full on classical chemo is not warranted in some cases.

Have that discussion with your docs and push HARD for some meaningful answers or consider another opinion.

Agree with CRguy. With all the personalized oncogenomics out there, I think some oncs are changing their opinion on adjuvant therapy for a select group of Stage 4's. However, I would want them to monitor the hell out of me - labs every few months, CT scans quarterly for the first year, etc.

I understand you're happy not to have chemo, but you need your docs to convince you that you're not gambling with your life. Ask what are the odds of a recurrence in your specific case and see if you're satisfied with their answers. And emphasize that you'd rather be over cautious than take chances. And if you have any doubts whatsoever, get a second opinion.

Juliej
Stage IVb, liver/lung mets 8/4/2010
Xelox+Avastin 8/18/10 to 10/21/2011
LAR, liver resec, HAI pump 11/2011
Adjuvant Irinotecan + FUDR
Double lung surgery + ileo reversal 2/2012
Adjuvant FUDR + Xeloda
VATS rt. lung 12/2012 - benign granuloma!
VATS left lung 11/2013
NED 11/22/13 to 12/18/2019, CEA<1

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CRguy
Posts: 10085
Joined: Sun Feb 10, 2008 6:00 pm

Re: Stage IV, what happens after surgery?

Postby CRguy » Thu Apr 25, 2019 12:23 am

OH ... OK YES
forgot to mention

MONITOR THE HELL OUTTA ME !!!!!!

Ummm... yes
JUST do what JulieJ says and make sure !!!!

:oops:
Caregiver x 4
Stage IV A rectal cancer/lung met
12 Year survivor
my life is an ongoing totally randomized UNcontrolled experiment with N=1 !
Review of my Journey so far

Tdubz
Posts: 149
Joined: Sun May 07, 2017 11:01 am

Re: Stage IV, what happens after surgery?

Postby Tdubz » Thu Apr 25, 2019 8:53 am

I still have neuropathy 2 years later and obviously the chemo didn’t work the first go around. I’m guessing maybe those things could have played a factor? My local onc wants a follow up so I will discuss it with him and then again with MDA when I head back there.

Pyro
Posts: 305
Joined: Mon Oct 12, 2015 7:40 pm
Location: Tucson, AZ

Re: Stage IV, what happens after surgery?

Postby Pyro » Thu Apr 25, 2019 8:58 am

Tdubz wrote:I was previously stage 3 and after surgery did 11 rounds of folfox. I was NED for 2 yrs and then a met showed up on my liver. I had surgery to remove the met last week. My oncologist said I would not have to do chemo. Is that normal? I was offered a clinical trial, but that depends on if I have CTDNA (circulating tumor dna) or not. I have a blood test scheduled but if the results come back negative, then they are just going to monitor me. I’m somewhat relieved that I don’t have to do chemo, but I’m also a bit worried at the same time. What kind of treatments did you have being stage 4 after all cancer had been surgically removed?


I’ll say it, that’s isn’t normal. If they diagnose you stage 4, the assumption is you have microsattelite disease all over, therefore chemo is given to eliminate this threat. I’d expect at least 1 round of the Iri or Ox, maybe 5FU. I know nothing of your age, health or tumor genetics though, there is a lot of mitigating factors. I too go to MDA, they usually stick to the standard of care until things get “wonky”, hope for the best!
Aug 2015- Stage 4 CC with liver Mets(38/m)
Sep 2015- Avastin/Folfox/Iron
Dec 2015-Not liver surgery candidate
Jan 2016- Erbitux/Folfiri, 2nd opinion at MDA in TX
Feb 2016 -MDA liver surgery
Mar 2016 -30% of left lobe rem, PVE
May 2016 - 70% of liver rem
Jun 2016-Rad
Jan 2017-perm colost @MDA
Jul 2017-Erb/FOLFURI
Nov 2017 -Lung & Liver ablations@MDA
Jan 2018 -Xeloda & Avastin mx
Jul 2018-Avast/FOLFURI
Sep 2018-Rad
Mar 2019 - Keytruda fail
Jun 2019 - FOLFURI
Aug 2019 - No more, quality time!

Tdubz
Posts: 149
Joined: Sun May 07, 2017 11:01 am

Re: Stage IV, what happens after surgery?

Postby Tdubz » Thu Apr 25, 2019 9:20 am

my surgeon initially thought I wouldn’t need chemo either, but that I’d need to talk to a medical onc just to make sure. The onc I was assigned to is the lead for this immunotherapy clinical trial. It seems like the trial is the route they are wanting me to go. I’m not opposed to the trial at all, I just want to get the full picture of all my options.

mpbser
Posts: 939
Joined: Wed Apr 19, 2017 11:52 am

Re: Stage IV, what happens after surgery?

Postby mpbser » Thu Apr 25, 2019 10:53 am

I was very surprised that my husband's oncologist and liver surgeon did not strongly advise him to do "mop-up" chemo after his liver resection in January 2018. Then, when we discovered he had a recurrence in early December 2018, they recommended no surgery, as they felt it was too soon after his previous one, and wanted to ablate the lesion. There was no talk of chemo at all - not for before their proposed procedure and not for afterwards. Nor was there any talk about immunotherapy. This did not seem like the best course of action and we felt like their plan would derail him from a chance of being cured. I jumped into high gear at that time to get him in to MSK where we believed he would get a far more aggressive approach that would ensure the highest likelihood of disease-free survival. He had his surgery last month and an HAI pump placed. Started chemo April 1st. I am very glad that we went this route and am very optimistic about his chances.
Wife 4/17 Dx age 45
5/17 LAR
Adenocarcinoma
low grade
1st primary T3 N2b M1a
Stage IVA
8/17 Sub-total colectomy
2nd primary 5.5 cm T1 N0
9 of 96 nodes
CEA: < 2.9
MSS
Lynch no; KRAS wild
Immunohistochemsistry Normal
Fall 2017 FOLFOX shrank the 1 met in liver
1/18 Liver left hepatectomy seg 4
5/18 CT clear
12/18 MRI 1 liver met
3/7/19 Resection & HAI
4/1/19 Folfiri & FUDR
5/13/19 HAI pump catheter dislodge, nearly bled to death
6-7 '19 5FU 4 cycles
NED

Gravelyguy
Posts: 275
Joined: Thu Jul 05, 2018 6:03 pm

Re: Stage IV, what happens after surgery?

Postby Gravelyguy » Thu Apr 25, 2019 1:55 pm

I was stage 4 at diagnosis, so that is a little different than you, but had 4 rounds of Folfox before surgery and 8 rounds after for my 2 liver mets. Mayo was quite adamant that I get adjuvant chemo.

Dave
6/17 dx mRC t3n1m1 very low rectal tumor 2 liver Mets 1.3 cm and .9 cm

6/17 begin 4 rounds Folfox w/Vectibix
9/17 short course radiation
10/17 rectal and liver resection LAR with coloanal anastomosis (no rectum left)
11/17-3/18 8 rounds Folfox
6/18 still NED!! Takedown
8/28/18 still NED! CEA .8 new low for me
10/18/18 colonoscopy clear
12/12/18 clear scans, CEA .9 still NED!
6/11/19 clear scans CEA 1.0
12/19/19 clear scans CEA 1.0 still NED!


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