Stage 4 - liver mets disappeared

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SGNYC
Posts: 35
Joined: Mon Sep 03, 2018 9:20 pm

Re: Stage 4 - liver mets disappeared

Postby SGNYC » Tue Nov 20, 2018 6:22 pm

Congrats on your response. My DH had a complete response in liver to 5 rounds of Folfox, though they did do resection at time of colon/lung resection bc original met location meant only 8% of liver had to be removed and it allowed them to do pathology to confirm (scar tissue only). It is a very good indicator, which we were relieved to hear about and I suspect it means very good things for you as well. So great to hear good news here.
Wife to DH, 44
DX July 18 - RC at Rectosigmoid
Adenocarcinoma, Mod diff
T3N1M1
Stage IV (but MSK said not a true Stage IV at Dx)
Pos nodes: 1/18
1 Liver Met and 1 Lung Met - liver Met dead tissue at surgery, hence MSK M1 status
Baseline CEA value of 25, now 3.4
LAR (Robotic)/Liver resect(dead tissue), VATS lung - clear margins
Temp Ileo- Reversal Feb 19
Folfox - 5 Rounds Neoadj, 3 rounds Adj, then discontinued Oxali and 4 rounds just 5FU
NED and Reversal Feb 2019 - clear contrast CT, clear contrast MRI

User avatar
henry123
Posts: 178
Joined: Sun Oct 08, 2017 3:25 am

Re: Stage 4 - liver mets disappeared

Postby henry123 » Thu Dec 06, 2018 7:39 pm

You probably fall in the category of medical miracles.
I can only recommend that you should do all you can to help your body.
Exercise, go on non animal - low fat diet ( follow Dr. Mcdougall ) , drink tons of fresh juices ( Chris beat cancer) , meditate and stay positive and happy.
46yo M msi-high Lynch +ve
5/16 lap AR 14/21 L nodes +ve
T4N2M1
7/16 Capox 9 cyc
9/16 cea 2
1/17 550
PET CT mets in lung & peri
iri+ avast fail
3/17 10577
4/17 regro fail
5/17 cea 28800
5/17 CT inc in size of mes nodes ,onset of multi nodules in liver.
6/17 Opdivo start
7/17 26754
8/17 5623
9/17 497
10/17 52
11/17 12
CT all clear exc a nodule in Lung. liver norm
1/18 3.6
4/18 2.0
Aspirin start
6/18 1.5 CT clear
12/18 1.1 CT Clear NED
4/19 1.1
Vegan yoga juicing apricot
Still on opdivo

Rgp
Posts: 13
Joined: Thu Nov 15, 2018 3:08 pm

Re: Stage 4 - liver mets disappeared

Postby Rgp » Mon Apr 29, 2019 9:46 pm

Hi all
I am looking for some thoughts/insights/experiences with maintenance chemo. My oncologist from DC area put me on maintenance chemo since I couldn't get a liver resection as my mets disappeared after neoadjuvent chemo. He said it's a no standard treatment and there is no evidence supporting it, but he has seen some success in some patients. The treatment is 5 days of Xeloda with two days off and he recommended it for the next 3-5 years. I asked him if I should take avastin and his answer was no. He said it's for people with active disease and since I am Ned, he doesn't want me to be on avastin. Anyways I am handing the Xeloda ok with some minor side effects like some tiredness.

Then he gave me the news that he is moving to Houston and I started looking for a new oncologist. Met with one from Hopkins, but she is dead set against the maintenance chemo. She is saying there is no evidence supporting it and she wouldn't take me on if I am to do the maintenance. She said she doesn't know if it's going to do more harm than good, so asked me make the decision. If I go with the maintenance, she wants me to find another oncologist who supports the maintenance. I am now confused what to do, whether to do the maintenance or not. Since Hopkins is major hospital and one of the doctors from there is completely against the maintenance, I don't know whether it's worth it. I am looking for some inputs from the fellow members here. Any advice on this is highly appreciated . Thank you all.
40 yr old male
3/6/18 colonoscopy - stage 4 rectal cancer, 3 liver Mets, perirectal lymph nodes
3/28/18 6 chemo-folfox and avastin
6/12/18 MRI showed liver mets disappeared
7/12/18 5 days radiation
7/23/18 rectal resection with clear margins. In the OR, the surgeon decided not to do it as he couldn't see any mets
7/31/18 diagnosed with PE
8/2/18 abscess, drain install
9/13/18 MRI/CT clear. No sign of liver mets
10/5/18 6 adjuvent chemo, folfox
1/19 Ct and MRI Clear. NED. Port removed.

mpbser
Posts: 854
Joined: Wed Apr 19, 2017 11:52 am

Re: Stage 4 - liver mets disappeared

Postby mpbser » Tue Apr 30, 2019 6:51 am

Wow, it must be very difficult, hearing two very different opinions like that. I am wondering why Dr. Saltz at MSK had not recommended the HAI pump.
Wife 4/17 Dx age 45
5/17 - Lap left
Adenocarcinoma
5 x 4 x 1 cm
low grade
T3 N2b M1a
Stage IV A
8/17 Sub-total colectomy
2nd tumor 5.5 cm T1 N0
lymph nodes: 9 of 96
CEA: 2.9 to 2.2
MSS/MSI-L
Lynch no; KRAS wild
Immunohistochemsistry Normal
Tumor DNA variants: MTOR, APC, TP53
1/18 Liver left hepatectomy seg 4
5/18 CT clear
12/18 MRI shows 1 met in liver
Resection & HAI Mar 7
Folfiri & FUDR started Apr 1

Pyro
Posts: 196
Joined: Mon Oct 12, 2015 7:40 pm
Location: Tucson, AZ

Re: Stage 4 - liver mets disappeared

Postby Pyro » Tue Apr 30, 2019 7:00 am

I tried the maintenance chemo you were offered, it didn’t work, I had more Mets pop up, if I would have known at the time I wouldn’t have done it. Everyone is different, stage 4 is complicated and everyone’s is different. I’d probably wait and see but do not be surprised if it comes back, just enjoy your time now.
Aug 2015- Diag Stage 4 CC with mets to liver (38/m)
Sep 2015- Avastin/Folfox/Iron
Dec 2015-Not a surgery candidate for liver
Jan 2016- Erbitux/Folfiri, 2nd opinion at MDA in TX
Feb 2016 -MDA liver surgery, Dr. Vauthey
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, CEA @30(3), shit still here

Rgp
Posts: 13
Joined: Thu Nov 15, 2018 3:08 pm

Re: Stage 4 - liver mets disappeared

Postby Rgp » Tue Apr 30, 2019 11:18 am

mpbser wrote:Wow, it must be very difficult, hearing two very different opinions like that. I am wondering why Dr. Saltz at MSK had not recommended the HAI pump.


MSK doesn't do the pump if there is no evidence of disease. By the time I met with Dr Saltz, my liver mets had disappeared from Chemo. I had clean liver scans from last June.
40 yr old male
3/6/18 colonoscopy - stage 4 rectal cancer, 3 liver Mets, perirectal lymph nodes
3/28/18 6 chemo-folfox and avastin
6/12/18 MRI showed liver mets disappeared
7/12/18 5 days radiation
7/23/18 rectal resection with clear margins. In the OR, the surgeon decided not to do it as he couldn't see any mets
7/31/18 diagnosed with PE
8/2/18 abscess, drain install
9/13/18 MRI/CT clear. No sign of liver mets
10/5/18 6 adjuvent chemo, folfox
1/19 Ct and MRI Clear. NED. Port removed.

User avatar
ginabeewell
Posts: 178
Joined: Wed Oct 24, 2018 10:30 am

Re: Stage 4 - liver mets disappeared

Postby ginabeewell » Tue Apr 30, 2019 11:43 am

Given how responsive you were to chemo initially, I think personally I would opt against maintenance treatment - with the idea that if you are monitoring very closely and have any sort of relapse, you'll be able to catch and treat it successfully.

I've always assumed that I would be on some sort of maintenance chemo, so I'm really interested to be reading here that many top centers are recommending against it. I'd love to do a little more research into the data that is driving that position.
45 year old mom of twins (7) and lucky stepmom of 13 and 15 year olds
9/11/18 colonoscopy
9/17/18 DX stage 4 CRC with inoperable liver metastasis (largest 11 cm)
9/20/18 CEA 931
10/1/18 FOLFOX + Vectibix planned 12 rounds
12/12/18 Routine scan picked up typhlitis - hospital stay for 7 days - but largest met down to 5 cm. Chemo holiday.
12/26/18 CEA 4.6!
1/14/18 Resume chemo (rounds 6-8)
3/27/19 Surgery: HAI pump placement / colon resection; liver resection to follow
CEA 2.6!!

Brearmstrong
Posts: 78
Joined: Sun Mar 26, 2017 3:24 pm
Location: CT

Re: Stage 4 - liver mets disappeared

Postby Brearmstrong » Tue Apr 30, 2019 2:37 pm

Timely post as I've been struggling with this same question the last few weeks. I've been NED for almost a year but have been on xeloda. My onc also says no to Avastin if no active disease and it caused a nasty pulmonary embolism when I was on it so I'm ok with his stance. However, xeloda has been increasingly very difficult for me. He has had to reduce dosage twice now and I've struggled to keep much needed weight on. My hand/foot syndrome has been extreme. I went from running marathons to having to use a cane. Dermatologist/oncologist gave me tons of different cremes but nothing has helped. I just had to take another 2 week break as my feet were so swollen and had lost so much skin that I was at real risk from infection. So frustrating as I don't even believe chemo works on my particular situation. It stopped my recurrence from growing but no shrinkage with folfiri and avastin. I wonder if I'm just feeling horrible most of the time for NO real benefit and won't change the final outcome of this disease.. then throw in there that onc's disagree on maintenance chemo and it's a real mind game as to what to do... Please keep us posted on your decision and how you make out.
45 F Jan 17 Mom 2 boys
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 scan Jul 2017 lung nodule 4mm, clean CT oct 17, CEA 3.4, nov 17 8.1. May 18 2.3 Jul 18 1.0 oct 18 1.3 Jan 19 1.3 Mar 19 1.0
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 Nov 18 CT clear, Feb 19 CT clear, May 19 CT clear

Milk Tea
Posts: 26
Joined: Wed Feb 13, 2019 1:14 pm

Re: Stage 4 - liver mets disappeared

Postby Milk Tea » Tue Apr 30, 2019 7:11 pm

Same here. My husband is on maintenance chemo Xeloda plus Avastin ( Xeloda 10 days on, 10 days off and Avastin every 3 weeks) for two years. While his medical oncologist strongly insists on continuing this regimen to prevent recurrence (because of his extensive liver involvement with 12 lesions), his surgical oncologist ( his liver surgeon who, in my opinion, saved his life) thinks it's over treatment and wants him to stop.

Two years of accumulated Xeloda causes a lot of GI system discomfort and bloating, Avastin causes high blood pressure and high protein in the urine. Those side effects are definitely uncomfortable but they are somehow manageable and if this regimen prevents recurrence, my husband is more than willing to continue on.

We really don't know who to listen to between our two oncologists.
Wife to DH
09/2016: Dx at 50, CC Ascending colon, 10+ liver Mets
KRAS-Mut G12V, MSS, CEA 8
09/2016: Nearly blocked, Emergency colon surgery (LAR)
FOLFOXIRI+Avastin: 6 before and 6 after liver resection
01/2017: Liver resection, open, both lobes, 40% total liver cut, tumors either cut out or microwave ablation burn, all tumors are out
02/2017-01/2019 : Clean CT every 3-4 months, CEA between 2-3
06/2017-Present: Maintenance Chemo: Xeloda + Avastin

Rgp
Posts: 13
Joined: Thu Nov 15, 2018 3:08 pm

Re: Stage 4 - liver mets disappeared

Postby Rgp » Tue Apr 30, 2019 9:51 pm

I think it's institutional preference too. In the DC area, Georgetown is big on maintenance while Hopkins says no to it. And then there is MSK with the pump. I really wish that all these fellas had a talk between them and share there knowledge, thoughts and experiences. Its hardly happening now. Every body is kind of stuck in their own bubbles nowadays.
40 yr old male
3/6/18 colonoscopy - stage 4 rectal cancer, 3 liver Mets, perirectal lymph nodes
3/28/18 6 chemo-folfox and avastin
6/12/18 MRI showed liver mets disappeared
7/12/18 5 days radiation
7/23/18 rectal resection with clear margins. In the OR, the surgeon decided not to do it as he couldn't see any mets
7/31/18 diagnosed with PE
8/2/18 abscess, drain install
9/13/18 MRI/CT clear. No sign of liver mets
10/5/18 6 adjuvent chemo, folfox
1/19 Ct and MRI Clear. NED. Port removed.

Gravelyguy
Posts: 151
Joined: Thu Jul 05, 2018 6:03 pm

Re: Stage 4 - liver mets disappeared

Postby Gravelyguy » Wed May 01, 2019 2:50 pm

Late to the thread. I had liver resection after 4 rounds of Folfox plus Vectibix and all that was found after the liver resection was a very small necrotic mass 4mm x 4mm. The surgical notes stated that they could not rule out a complete response to the chemo. This was at Mayo Rochester. They did want me to finish with 8 more rounds of Folfox but there was never any talk of maintenance chemo.

I have been NED since the surgery which was in early October 2017.

Hope this helps.

Dave
Last edited by Gravelyguy on Wed May 01, 2019 4:50 pm, edited 1 time in total.
6/17 dx mCRC 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!

User avatar
ginabeewell
Posts: 178
Joined: Wed Oct 24, 2018 10:30 am

Re: Stage 4 - liver mets disappeared

Postby ginabeewell » Wed May 01, 2019 3:43 pm

I found this article which looked at the benefit of maintenance chemo for different types of patients:

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5844763/

I guess this would suggest that as a complete responder, you may benefit from it?
45 year old mom of twins (7) and lucky stepmom of 13 and 15 year olds
9/11/18 colonoscopy
9/17/18 DX stage 4 CRC with inoperable liver metastasis (largest 11 cm)
9/20/18 CEA 931
10/1/18 FOLFOX + Vectibix planned 12 rounds
12/12/18 Routine scan picked up typhlitis - hospital stay for 7 days - but largest met down to 5 cm. Chemo holiday.
12/26/18 CEA 4.6!
1/14/18 Resume chemo (rounds 6-8)
3/27/19 Surgery: HAI pump placement / colon resection; liver resection to follow
CEA 2.6!!

Rgp
Posts: 13
Joined: Thu Nov 15, 2018 3:08 pm

Re: Stage 4 - liver mets disappeared

Postby Rgp » Thu May 02, 2019 3:30 pm

Gravelyguy wrote:Late to the thread. I had liver resection after 4 rounds of Folfox plus Vectibix and all that was found after the liver resection was a very small necrotic mass 4mm x 4mm. The surgical notes stated that they could not rule out a complete response to the chemo. This was at Mayo Rochester. They did want me to finish with 8 more rounds of Folfox but there was never any talk of maintenance chemo.

I have been NED since the surgery which was in early October 2017.

Hope this helps.

Dave


I am curious how did they know where to do the surgery on the liver as you has a complete response. Did you have a marker placed before the chemo? In my case the the liver surgeon went in to do the surgery, but decided against it as he couldn't find anything on the liver.
Thanks
40 yr old male
3/6/18 colonoscopy - stage 4 rectal cancer, 3 liver Mets, perirectal lymph nodes
3/28/18 6 chemo-folfox and avastin
6/12/18 MRI showed liver mets disappeared
7/12/18 5 days radiation
7/23/18 rectal resection with clear margins. In the OR, the surgeon decided not to do it as he couldn't see any mets
7/31/18 diagnosed with PE
8/2/18 abscess, drain install
9/13/18 MRI/CT clear. No sign of liver mets
10/5/18 6 adjuvent chemo, folfox
1/19 Ct and MRI Clear. NED. Port removed.

Rgp
Posts: 13
Joined: Thu Nov 15, 2018 3:08 pm

Re: Stage 4 - liver mets disappeared

Postby Rgp » Thu May 02, 2019 3:31 pm

ginabeewell wrote:I found this article which looked at the benefit of maintenance chemo for different types of patients:

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5844763/

I guess this would suggest that as a complete responder, you may benefit from it?

Thanks. Yeah this looks like I may benefit from it.
40 yr old male
3/6/18 colonoscopy - stage 4 rectal cancer, 3 liver Mets, perirectal lymph nodes
3/28/18 6 chemo-folfox and avastin
6/12/18 MRI showed liver mets disappeared
7/12/18 5 days radiation
7/23/18 rectal resection with clear margins. In the OR, the surgeon decided not to do it as he couldn't see any mets
7/31/18 diagnosed with PE
8/2/18 abscess, drain install
9/13/18 MRI/CT clear. No sign of liver mets
10/5/18 6 adjuvent chemo, folfox
1/19 Ct and MRI Clear. NED. Port removed.

Gravelyguy
Posts: 151
Joined: Thu Jul 05, 2018 6:03 pm

Re: Stage 4 - liver mets disappeared

Postby Gravelyguy » Thu May 02, 2019 7:40 pm

Rgp wrote:
I am curious how did they know where to do the surgery on the liver as you has a complete response. Did you have a marker placed before the chemo? In my case the the liver surgeon went in to do the surgery, but decided against it as he couldn't find anything on the liver.
Thanks


Rgp

They used the pre chemo MRI to guide them. They ablated a bigger section on my deeper met and it took them 3 tries before they got the remains of the met closer to the surface.

Dave
6/17 dx mCRC 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!


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