Stage 4 to NED- Please tell us

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NedPlease
Posts: 537
Joined: Fri Mar 23, 2012 3:56 pm

Re: Stage 4 to NED- Please tell us

Postby NedPlease » Thu Oct 11, 2018 9:03 pm

Still here:)
N
F-54- St 4- Ascend Colon, 2 Liver mets, Poorly dif, Mutant
6/10- Folfox
9/10- R Liver Resect/Colon/Gall/Appendix
11/10-3/11- Folfox
11/11- R Lung, 1 met, VATS
3/12- 9/12- Xeloda
2/12- 6/18 Clear Scans
Today- NED

Spazzyjanet
Posts: 45
Joined: Mon Oct 01, 2018 3:28 pm
Facebook Username: Heather Stoker

Re: Stage 4 to NED- Please tell us

Postby Spazzyjanet » Thu Oct 11, 2018 9:11 pm

Ehut wrote:Another long term (6+ years) stage IV survivor here. It sounds like the disease in the liver is limited in your case, so hopefully resectable. If it's not resectable, I would try to find a center that offers HAI to hopefully get it to that state.


So as has been true of every step along the way so far, the radiologist punted bad news to the onc. It turns out that I have 6 liver mets; 3 on right lobe, 3 on left. I got redirected to a surgical oncologist who is getting an additional MRI to use as a baseline for a future resection and/or ablation after chemo.
40 yr old, 3 kids. Dx 9/2018, Stage IV
KRAS G12V (resistant to Cetuximab)
CEA levels normal at diagnosis
4.2 cm Tumor, PT3, PN2B
11 of 18 with adenocarcinoma
+ removal of one cancerous node in Peritoneum.
9/2018, Colon resection and Ostomy-- Margins Negative
10/2018, PET shows 6 liver mets; 1 2cm, 5 smaller. 3 on left lobe, 3 on right.
10/2108, begin FOLFOX (Oxi+5 FU)

Mattie
Posts: 58
Joined: Fri Mar 07, 2014 1:06 am

Re: Stage 4 to NED- Please tell us

Postby Mattie » Thu Oct 11, 2018 9:31 pm

Hi.

Don't despair. I know it's scary...been there. 8.5 years later I am still here. I am in and out of NED. My journey below. My life has not changed much except for treatment every three weeks. I'm still living, working and managing my disease.

I wish you and your hubby the best.

Sue
4/10 debulk, DX stage IVb, 49yo
5/10-11/11 Folfox, then Xeloda/Avastin
4/13 Resect liver met + pelvic node
7/14 SBRT 15 mm Liver & node
12/14 SBRT 8 mm Liver met
3/16 4-5 pelvic nodes, Xeloda/Avastin again
12/16 NED, sticking with Xeloda/Avastin
8/17 still NED Dropping xeloda. Avastin only.
10/18 still NED sticking with Avastin only

Spazzyjanet
Posts: 45
Joined: Mon Oct 01, 2018 3:28 pm
Facebook Username: Heather Stoker

Re: Stage 4 to NED- Please tell us

Postby Spazzyjanet » Fri Oct 12, 2018 4:50 am

Mattie, what are your thoughts on the FOLFOX vs. Xeloda. At my last appointment, my onc offered both as viable options but that FOLFOX had more data behind it overall because it's been around longer. He also implied that Xeloda might have more side effects for caucasians (?). With that data I went with option #1, but now I'm wondering. Perhaps this is better as a separate post?
40 yr old, 3 kids. Dx 9/2018, Stage IV
KRAS G12V (resistant to Cetuximab)
CEA levels normal at diagnosis
4.2 cm Tumor, PT3, PN2B
11 of 18 with adenocarcinoma
+ removal of one cancerous node in Peritoneum.
9/2018, Colon resection and Ostomy-- Margins Negative
10/2018, PET shows 6 liver mets; 1 2cm, 5 smaller. 3 on left lobe, 3 on right.
10/2108, begin FOLFOX (Oxi+5 FU)

Ehut
Posts: 193
Joined: Wed Sep 26, 2012 4:24 pm
Location: Algonquin, IL

Re: Stage 4 to NED- Please tell us

Postby Ehut » Fri Oct 12, 2018 1:15 pm

Spazzyjanet wrote:
Ehut wrote:Another long term (6+ years) stage IV survivor here. It sounds like the disease in the liver is limited in your case, so hopefully resectable. If it's not resectable, I would try to find a center that offers HAI to hopefully get it to that state.


So as has been true of every step along the way so far, the radiologist punted bad news to the onc. It turns out that I have 6 liver mets; 3 on right lobe, 3 on left. I got redirected to a surgical oncologist who is getting an additional MRI to use as a baseline for a future resection and/or ablation after chemo.


In my case, IIRC 4 tumors were in the left lobe, 2 in the right. They removed the entire left lobe and did "wedge" resections on the right. Find a good surgeon who may be able to be "safely aggressive".
Dx 12/11 rectal stage IV w/ 6 mets to liver, age 35
4 cycles FOLFOX 12/11 to 2/12
short course radiation 2/12
rectal/liver resection 3/12, temp ileostomy
8 cycles FOLFOX/FOLFIRI 4/12 to 8/12
ileostomy reversal 10/12
port out 10/13
NED for 6+ years and counting!

teacher2017
Posts: 205
Joined: Sat Sep 09, 2017 1:18 pm
Facebook Username: Lydia Clark

Re: Stage 4 to NED- Please tell us

Postby teacher2017 » Fri Oct 12, 2018 8:16 pm

Get to resection then you are going for “cure.” I know it’s scary. I’m still scared. I went from stage 3c to 4 when one met invaded my liver. I had it resected immediately and no chemo needed for now. Life is relatively normal and everyday I am waiting for the show to drop. But I also think many people tests this like a chronic illness not a terminal disease. Get in the game and do whatever it takes to be here. We are with you!
48 year old female- mom of 2 (12,15)
DX stage 3c - 12/17 LN. T3
8" sigmoid resection Sept 22 2017
6.1cm tumor size
chemo -folfox 11/8/17-4/18
CEA level- 1.4 11/8/17
Colonoscopy- 5/30/18 - CLEAR!
Cea level- 1.8 6/1/18
Cea level- 2.1. 8/4/18
Sh$t has hit the fan- 8/10/18 Stage 4
1cm met in seg.8 liver
Liver resection- 9/12/18

gfpiv
Posts: 156
Joined: Tue May 25, 2010 9:24 pm

Re: Stage 4 to NED- Please tell us

Postby gfpiv » Fri Oct 12, 2018 8:48 pm

Someone has to beat the odds, why not you? Glad to see many other survivors piping in. I was dx'd Stage IV with over half my liver cancerous at age 39 in 2010. Thanks to great response to chemo, HAI at Sloan (which probably saved my life), some other things I tried (especially exercise!), good luck and divine grace, I am still here and officially NED 8 years later. The best thing you can do is to educate yourself on your options...and always get a second opinion (or a third).

Sorry for the short response, but best wishes in facing and overcoming the challenges ahead.
-Chip
Chip
DX stage IV CC Jan '10, numerous unresectable liver mets
FOLFOX + Avastin Feb-Jul '10
Colon resection, HAI install Aug '10
Systemic FOLFIRI and hepatic FUDR Dec'10-May'12
Chemo break May'12-pres (tumors calcified & stable, knock on wood)
Billiary bypass surgery and SBRT on pesky liver met in 2015

mariane
Posts: 630
Joined: Sun Sep 13, 2015 6:16 pm

Re: Stage 4 to NED- Please tell us

Postby mariane » Fri Oct 12, 2018 9:03 pm

I am still clear as well. 3.5 years after my diagnosis in June 2015. I had 10+ mets in my liver. I got FOLFIRINOX as first line chemo, than HAI pump. Last surgery in May 2016. Off treatment.
I wish you best of luck!
mom of now 9 years old twins, dx @ 40 in 6/2015 with upper rectal cancer, 10+ liver mets, CEA 140
chemo: 8/2015 - 10/2016 - 4xFOLFIRINOX, 2xFOLFOX, 8xFOLFIRI, 10x5FU, HAI pump -12xFUDR
4 surgeries, complete pathological response
CEA<2 since 10/2015
NED since May 2016

I praise God for every day with my family!

AppleTree
Posts: 240
Joined: Fri Mar 18, 2016 8:16 am

Re: Stage 4 to NED- Please tell us

Postby AppleTree » Sat Oct 13, 2018 12:01 am

Mine progressed to Stage 4 with a lung met. I never did let them do a biopsy. I scheduled the VAT surgery and told them to biopsy it once they got it out. Yup, it was rectal cancer in my lung. So, then 12 rounds of Folfox. My July PET was clear. I stopped chemo 6 months ago and have another PET on Monday. If Monday's scan continues to be stable, then my next scan will be in 6 months.
Diag Feb 5, 2016 Age 45
3 cm tumor 5 cm from verge
Radiation + Xeloda pills - 3000mg 5x week
3/14 - 4/16 - 25 sessions
Shrank just over 50% L nodes 0/13
Remove rectum with temp Ileo 6/17
Reversal 7/20 due to infection
Acute hepatitis August. Chemo cancelled
June to September 2016 - 58 days in hospital

2017
6/16, MRI shadow in lung
Pet - 6.6mm Met in Upper right lobe
7/30 VAT surgery Mass General/Boston
8/24 port
8/30 - 4/28 Folfox. 12 rounds
2018
June CT shows new lung Mets.
July PET...CLEAR!

User avatar
cecioboe
Posts: 594
Joined: Mon Oct 17, 2011 9:08 pm
Facebook Username: Ceci Lagarenne (Higgins)
Location: Texas

Re: Stage 4 to NED- Please tell us

Postby cecioboe » Sat Oct 13, 2018 12:19 am

Yes! My husband Jim had been cancer free since 2012. Positive attitude, good doctors and a strong support system helped him (us).
Best wishes to you.
Wife to Jim Stage IV RC w/liver mets
DX 9/16/11
T3N1M1
Oct - Dec 2011 chemo/rad
1/04/12 ileo
1/16/12 LAR, liver resection
2/29/12 blockage, emer surg, ileo rev
4/16/12- 9/16/12 chemo
10/22/12 - 10/3/18 NED
De-ported 6/24/16

stu
Posts: 874
Joined: Sat Aug 17, 2013 5:46 pm

Re: Stage 4 to NED- Please tell us

Postby stu » Sat Oct 13, 2018 3:10 am

So good to see all the old names doing so well .
Things are definitely changing .
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 .

User avatar
DBF
Posts: 301
Joined: Fri Jun 07, 2013 1:44 pm
Facebook Username: https://www.facebook.com/#!/profile.php?id=1000008
Location: New York

Re: Stage 4 to NED- Please tell us

Postby DBF » Sat Oct 13, 2018 8:51 am

Hello,
I’m not usually on the board a lot anymore, but I wanted to chime in because I also thought I was stage III, after I was told the spot on my liver was most likely a hemangioma. I remember finding out after the biopsy that it was cancer, and feeling hopeless and looking for long term survivors like you are now. I’m now one of those survivors, free of disease for a number of years.
I was a candidate for a liver resection immediately, five weeks after I had my colon resection. I did FOLFOX after that, and then I did ADAPT for various reasons. It’s been almost 5 1/2 years since my diagnosis. :D
I’m sorry you and your family are going through this. Feel free to message me if you’d like to chat, and best of luck to you! There are so many long term survivors. I second the HAI recommendation if you are not currently resectable.

Best,
Donna
6/13 Dx @ 29 Wks pregnant, 42 yo
Adenocarcinoma, mucinous features
7/13 C-sec/col resec/part. hysterectomy
8/13 Pulm embolism
8/13 Liv met
9/13 Liv resect
FOLFOX
CEA UP
ADAPT: Xeloda/Celebrex
2/14 oopherectomy
10/15 obstruction surg
10/17 Scar tissue removal/vsg surg
NED :D
Mom to 3 boys: 20, 8 & 5

Mattie
Posts: 58
Joined: Fri Mar 07, 2014 1:06 am

Re: Stage 4 to NED- Please tell us

Postby Mattie » Sat Oct 13, 2018 1:34 pm

Spazzyjanet wrote:Mattie, what are your thoughts on the FOLFOX vs. Xeloda. At my last appointment, my onc offered both as viable options but that FOLFOX had more data behind it overall because it's been around longer. He also implied that Xeloda might have more side effects for caucasians (?). With that data I went with option #1, but now I'm wondering. Perhaps this is better as a separate post?


I have heard they are about the same. Xeloda is alot more convenient, since it is a pill form. I went with the Folfox standard when I was first dx, and then when it came back, I went with Xeloda and it put it back in remission. Some of this is trial and error.

If I were you I would have selected the same, option 1 first, and use xeloda later.

hugs
4/10 debulk, DX stage IVb, 49yo
5/10-11/11 Folfox, then Xeloda/Avastin
4/13 Resect liver met + pelvic node
7/14 SBRT 15 mm Liver & node
12/14 SBRT 8 mm Liver met
3/16 4-5 pelvic nodes, Xeloda/Avastin again
12/16 NED, sticking with Xeloda/Avastin
8/17 still NED Dropping xeloda. Avastin only.
10/18 still NED sticking with Avastin only

Spazzyjanet
Posts: 45
Joined: Mon Oct 01, 2018 3:28 pm
Facebook Username: Heather Stoker

Re: Stage 4 to NED- Please tell us

Postby Spazzyjanet » Sun Oct 14, 2018 9:17 am

Thanks again to everyone chiming in with some hope.

The oncological surgeon that I spoke with this week at our local cancer center was the first doctor that I've seen so far that gave me confidence that he knew his stuff, actually read all of my information and wasn't punting bad news.

He wants to do 3 months chemo, then a scan, and then possibly going in and resecting and/or ablating the liver (putting my colon back together as well.) He has ordered an MRI as a baseline so that if any mets become invisable later, he can still include those areas in resections or ablations. This is because they might likely still be there and the goal is to prevent recurrence.

Yesterday I read that for stage 4 patients with successful resections the 5- year survival rate goes up to 40%. Let's hope that he can do that. Grabbing onto allof the hope that I can.
40 yr old, 3 kids. Dx 9/2018, Stage IV
KRAS G12V (resistant to Cetuximab)
CEA levels normal at diagnosis
4.2 cm Tumor, PT3, PN2B
11 of 18 with adenocarcinoma
+ removal of one cancerous node in Peritoneum.
9/2018, Colon resection and Ostomy-- Margins Negative
10/2018, PET shows 6 liver mets; 1 2cm, 5 smaller. 3 on left lobe, 3 on right.
10/2108, begin FOLFOX (Oxi+5 FU)

mpbser
Posts: 478
Joined: Wed Apr 19, 2017 11:52 am

Re: Stage 4 to NED- Please tell us

Postby mpbser » Tue Oct 16, 2018 7:37 am

Spazzyjanet,

Good to hear that he is having an MRI. I have to advocate for my husband to get them instead of CTs as his CTs never picked up on his liver tumor. (I honestly don't know why the oncologist had ordered a CT in May when he originally said that surveillance was going to be with MRIs.) The gold standard is abdominal MRI for liver mets and Chest CTs to watch out for lung mets. That is what we are having done this fall.

With the best care you can possibly get and super strong advocacy, that 40% can get bumped to 80%. I'm definitely not the most well liked patients' spouse by his doctors, but I'm always making sure that my husband is getting the best treatment the medical system can provide (within our means).
Wife 4/17 Dx age 45
5/17 - Lap left hemi
Adenocarcinoma
5 x 4 x 1 cm
low grade
T3 N2b M1a
Stage IV A
lymph nodes: 9 of 54
8/17 Sub-total colectomy
2nd tumor 5.5 cm T1 N0
CEA: 1.4, 2.1, 1.5, 1.9, 1.9, 2.1, 2.1, 2.4, 1.7, 2.0
MSS/MSI-L
Lynch no; KRAS wild
Immunohistochemsistry: Normal MLH1, MSH2, MSH6, and PMS2
Tumor DNA variants: MTOR, APC, TP53
Liver left hepatectomy seg 4 1/31/18
5/18 NED


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