Stage 4, over 4 years since diagnosis, still NED

Please feel free to read, share your thoughts, your stories and connect with others!
mariane
Posts: 678
Joined: Sun Sep 13, 2015 6:16 pm

Stage 4, over 4 years since diagnosis, still NED

Postby mariane » Mon Jul 29, 2019 2:00 pm

Hi!
I wanted to share the good news I received today. In June 2015 my whole little world collapsed , since I got diagnosed with inoperable stage 4 cancer. I was given zero chance to make it. I found CptMac post on one of the cancer forum which mentioned hepatic pump. This post made me seek Dr. Kemeny's help. I am here, off meds, and any treatment, living normal life, seeing my kids grow.
I wish you all good luck!
mom of now 11 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!

Punky44
Posts: 441
Joined: Mon Oct 01, 2018 4:29 pm

Re: Stage 4, over 4 years since diagnosis, still NED

Postby Punky44 » Mon Jul 29, 2019 2:11 pm

Congratulations!!!
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.

stu
Posts: 1363
Joined: Sat Aug 17, 2013 5:46 pm

Re: Stage 4, over 4 years since diagnosis, still NED

Postby stu » Mon Jul 29, 2019 2:56 pm

Fantastic news . How time flies ! I can hardly believe it’s been four years .
So good to hear you are having fun with your family .
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 .

kandj
Posts: 293
Joined: Sun Sep 27, 2015 11:29 am

Re: Stage 4, over 4 years since diagnosis, still NED

Postby kandj » Mon Jul 29, 2019 3:31 pm

Wonderful news my friend! I remember seeing you in the hospital after your last surgery. So glad you are doing well.
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 lung/adrenal gland recurrence 11/19
Adrenal ablation2/20 Robotic Assisted VATS 3/20 Xeloda again

mariane
Posts: 678
Joined: Sun Sep 13, 2015 6:16 pm

Re: Stage 4, over 4 years since diagnosis, still NED

Postby mariane » Mon Jul 29, 2019 3:32 pm

Punky44 wrote:Congratulations!!!

Thank you!
mom of now 11 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!

mariane
Posts: 678
Joined: Sun Sep 13, 2015 6:16 pm

Re: Stage 4, over 4 years since diagnosis, still NED

Postby mariane » Mon Jul 29, 2019 3:34 pm

stu wrote:Fantastic news . How time flies ! I can hardly believe it’s been four years .
So good to hear you are having fun with your family .
Stu

Thank you!
All the best for mum and you! I will never forget your kind words during my multiple surgeries and chemo. We visited Scotland this summer. So beautiful!
mom of now 11 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!

mariane
Posts: 678
Joined: Sun Sep 13, 2015 6:16 pm

Re: Stage 4, over 4 years since diagnosis, still NED

Postby mariane » Mon Jul 29, 2019 3:36 pm

kandj wrote:Wonderful news my friend! I remember seeing you in the hospital after your last surgery. So glad you are doing well.

Thank you! All the best for you and Joe! Time flies...
mom of now 11 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!

mpbser
Posts: 953
Joined: Wed Apr 19, 2017 11:52 am

Re: Stage 4, over 4 years since diagnosis, still NED

Postby mpbser » Mon Jul 29, 2019 4:07 pm

Awesome news. You've been an inspiration to me.
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

mariane
Posts: 678
Joined: Sun Sep 13, 2015 6:16 pm

Re: Stage 4, over 4 years since diagnosis, still NED

Postby mariane » Mon Jul 29, 2019 6:28 pm

mpbser wrote:Awesome news. You've been an inspiration to me.

Thank you!
I owe a lot people from this forum.
mom of now 11 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!

stu
Posts: 1363
Joined: Sat Aug 17, 2013 5:46 pm

Re: Stage 4, over 4 years since diagnosis, still NED

Postby stu » Tue Jul 30, 2019 3:06 am

How Fantastic. If I knew you were over you could have popped in for tea . Or gone on a wee kayak trip with my mum . She is celebrating ten years as a stage 4 patient and went kayaking on open seas to celebrate. Not bad at 77 ! Needed a wee hand up though !
Glad you liked it !
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 .

stu
Posts: 1363
Joined: Sat Aug 17, 2013 5:46 pm

Re: Stage 4, over 4 years since diagnosis, still NED

Postby stu » Tue Jul 30, 2019 3:06 am

How Fantastic. If I knew you were over you could have popped in for tea . Or gone on a wee kayak trip with my mum . She is celebrating ten years as a stage 4 patient and went kayaking on open seas to celebrate. Not bad at 77 ! Needed a wee hand up though !
Glad you liked it !
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 .

stu
Posts: 1363
Joined: Sat Aug 17, 2013 5:46 pm

Re: Stage 4, over 4 years since diagnosis, still NED

Postby stu » Tue Jul 30, 2019 3:07 am

How Fantastic. If I knew you were over you could have popped in for tea . Or gone on a wee kayak trip with my mum . She is celebrating ten years as a stage 4 patient and went kayaking on open seas to celebrate. Not bad at 77 ! Needed a wee hand up though !
Glad you liked it !
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 .

tater
Posts: 128
Joined: Wed Jul 19, 2017 5:53 pm

Re: Stage 4, over 4 years since diagnosis, still NED

Postby tater » Tue Jul 30, 2019 9:43 am

Such great news. My wife is coming up on two years NED, fingers crossed. Its people like you sharing your story that helps me get through this.
DH to 38 wife w/kids
Stage 3C DX 3/3/17 CEA 29
5-fu and radiation ended May 17, 2017
Stage 4 External iliac node July 17, 2017
FOLFOX + Avistan July 18 2017 CEA 2.3
Nov 9, 2017 Coloanal Anastomosis, Hysterectomy & External Nodes Removed W/ileostomy
Clear Margins NED
CEA 1.5 12/17, 2.1 2/18, 2.3 6/18, 1.1 9/18, 1.3 12/18, 1.8 3/19, 2.5 6/19
Clear CT and MRI on 2/5/2018, 9/18 Clear Scans
Reversal Surgery 6/26/18
Small Spot on right ureter surgery 10/30/19 adhered to artery
Dec. 2 start 12 rounds FOLFIRI

User avatar
Jack&KatiesMommy
Posts: 617
Joined: Wed Dec 21, 2011 1:08 pm
Location: Columbus, OH

Re: Stage 4, over 4 years since diagnosis, still NED

Postby Jack&KatiesMommy » Tue Jul 30, 2019 2:48 pm

I am so happy for you, Mariane! I remember when your twins were just tots! So glad that you are here with them!
Love,
Cynthia
Cynthia
Mommy to Jack (8) now (17) and Katie (4) now (13)
(My Most Precious Things)
Dx 8/11 Stage IV CRC (liver mets) CEA 2,600+
9/11 Folfiri 2/12: Failed Liver Resection
5/12 HAI pump/removed primary
4/13 Liver Resection
8/13-12/15 (10) RFAs lungs
5/17: Upper Left Lobe of lung resected.
02/18: 3 new lymph mets lung
05/18: Keytruda (MSS w/Intermediate TMB): NED CEA: 66.4, 39.2, 23.8, 13, 3.5 1.8, 1.0, 2.8 3.9, 5.0, 5.6, 1.5, .8,

User avatar
juliej
Posts: 3106
Joined: Thu Aug 05, 2010 12:59 pm

Re: Stage 4, over 4 years since diagnosis, still NED

Postby juliej » Tue Jul 30, 2019 5:08 pm

Congratulations and God bless you, Mariane!

I feel like we two are connected - pump sisters forever!!! :D :D :D

Hearing your good news warms my heart and gives me hope for all the rest of Kemeny's patients. If we, two of the least likely to survive, can make it, then others can too with the right approach!

xoxoxo,
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


Return to “Colon Talk - Colon cancer (colorectal cancer) support forum”



Who is online

Users browsing this forum: Google [Bot] and 3 guests