From Stage IV to NED!!!!!!

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

From Stage IV to NED!!!!!!

Postby SGNYC » Fri Feb 01, 2019 1:53 pm

Hi Everyone,

I haven’t posted in several weeks because it’s been a lot of scans and bloodwork and prep for ileostomy reversal. But I wanted to let this board know that as of this morning my DH is now NED per his oncologist!!!!

It’s been quite the journey here from his July 4th Dx and we now enter a new phase of closely monitoring him, but I immediately wanted to share (1) because I’ve been so grateful to this group for the feedback and support throughout this tough road AND (2) because it gave and continues to give me so much hope to see the achievement of this moment from others, especially Stage IVs.

To everyone, thank you and I hope this provides some encouragement - there are paths to healthy for Stage IVs.
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

Trying
Posts: 240
Joined: Sun May 13, 2018 10:11 pm

Re: From Stage IV to NED!!!!!!

Postby Trying » Fri Feb 01, 2019 3:44 pm

That is wonderful news!
38 yr old single mom of almost 2 year old at the time
April 2018 colon cancer stage IV 10 liver mets and peri met. Folfox and 12 rounds oxyplatin
Fec 2018 Down to 2 mets in liver. 8 dissapeared
July 2019 switched to xeloda pills as I prefer to 3 day infusion. Also on avistan
Oct 2019 emergency colostomy due to perforated bowel. ( unreal pain)
Feb 2020 show 2mm tumor increase.
Plan to go back on oxy

User avatar
LPL
Posts: 651
Joined: Fri Apr 22, 2016 12:49 am
Location: Europe

Re: From Stage IV to NED!!!!!!

Postby LPL » Fri Feb 01, 2019 3:54 pm

SGNYC wrote:Hi Everyone,

I haven’t posted in several weeks because it’s been a lot of scans and bloodwork and prep for ileostomy reversal. But I wanted to let this board know that as of this morning my DH is now NED per his oncologist!!!!

It’s been quite the journey here from his July 4th Dx and we now enter a new phase of closely monitoring him, but I immediately wanted to share (1) because I’ve been so grateful to this group for the feedback and support throughout this tough road AND (2) because it gave and continues to give me so much hope to see the achievement of this moment from others, especially Stage IVs.

To everyone, thank you and I hope this provides some encouragement - there are paths to healthy for Stage IVs.

Big Congratulations!!! :D Thank you for sharing.
If you can.. please create a signature:
ucp.php?i=ucp_profile&mode=signature
This will help us see/understand your journey, what you have done.
DH @ 65 DX 4/11/16 CC recto-sigmoid junction
Adenocarcenoma 35x15x9mm G3(biopsi) G1(surgical)
Mets 3 Liver resectable
T4aN1bM1a IVa 2/9 LN
MSS, KRAS-mut G13D
CEA & CA19-9: 5/18 2.5 78 8/17 1.4 48 2/14/17 1.8 29
4 Folfox 6/15-7/30 (b4 liver surgery) 8 after
CT: 8/8 no change 3/27/17 NED->Jan-19 mets to lung NED again Oct-19 :)
:!: Steroid induced hyperglycemia dx after 3chemo
Surgeries 2016: 3/18 Emergency colostomy
5/23 Primary+gallbl+stoma reversal+port 9/1 Liver mets
RFA 2019: Feb & Oct lung mets

Punky44
Posts: 440
Joined: Mon Oct 01, 2018 4:29 pm

Re: From Stage IV to NED!!!!!!

Postby Punky44 » Fri Feb 01, 2019 5:49 pm

Great news! Thank you for sharing!
Caregiver to my amazing mom (68 at dx)
10/1/18 DX with rectal cancer; CEA 17
T3N2M0
Total neoadjuvant therapy:
8 rounds Folfox 11/5/18 - 2/11/19
Short course radiation 3/14/19 - 3/20/19
Robotically assisted laparoscopic LAR 3/21/19
Pathology report says yT2N0M0 with 0/38 nodes
6/28/19 Reversal and port out
CEA 2.1; 1.9; 2.6; 2.8; 2.3
Latest update: 6/20–Clear CT, normal CEA

Me: 34, first colonoscopy 11/16/18—normal! Come back in 5 years.

AmyG
Posts: 338
Joined: Tue Dec 25, 2018 8:08 pm

Re: From Stage IV to NED!!!!!!

Postby AmyG » Fri Feb 01, 2019 6:28 pm

Hopefully I'll have the same story to share!

That's amazing news for your family.
42 dx @ 9wks pregnant w/baby #8 8/18
Sigmoid colon resection 9/18
Adenocarcinoma, G2, T3N0M0..or so we thought
KRAS/BRAF wild
Liver biopsy is malignant, stage iv now boys!
Delivered healthy baby 3/19
FOLFOX + Avastin 5/19
CEA 167 to 24 after 4 rounds
Liver resection 8/28/19
NED!! CEA 2.3
CEA 5.8 idk wtf is up with that, but everything else is clear!
CEA 3.7 make up your damn mind...
CEA 1.5 that's a new low!

User avatar
O Stoma Mia
Posts: 1600
Joined: Sat Jun 22, 2013 6:29 am

Re: From Stage IV to NED!!!!!!

Postby O Stoma Mia » Sat Feb 02, 2019 5:26 am

LPL wrote:...
Big Congratulations!!! :D Thank you for sharing.
If you can.. please create a signature:
http://coloncancersupport.colonclub.com ... =signature
This will help us see/understand your journey, what you have done.

Here is a template for use in creating a signature:
https://coloncancersupport.colonclub.com/viewtopic.php?f=1&t=52681&p=421597#p421597

del
Posts: 118
Joined: Thu Mar 03, 2016 11:21 pm
Location: Sydney, Australia

Re: From Stage IV to NED!!!!!!

Postby del » Sat Feb 02, 2019 5:54 am

Can't begin to imagine the difficult battle you and your DH have been through, but these success stories are so uplifting! Hope you are both enjoying NEDville! :D
Male, 33 @ dx, stage 1 RC (T1N0M0 0/29 LNs)
2016-02 - Cancerous polyp removed during colonscopy, 0.5 mm margin
2016-03 - ULAR & TME surgery, temp ileostomy
2016-04 - DVT, pulmonary embolism
2016-11 - Ileostomy reversal
2018-10 - Another DVT & PE

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

Re: From Stage IV to NED!!!!!!

Postby SGNYC » Tue Feb 12, 2019 4:21 pm

Think I’ve got the signature down - hope this helps. Second round of clean scans today - NED! Ileo reversal this week
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


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