Stage 4, over 4 years since diagnosis, still NED

Please feel free to read, share your thoughts, your stories and connect with others!
TinaFish
Posts: 178
Joined: Sun Jul 21, 2019 10:11 am

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

Postby TinaFish » Tue Jul 30, 2019 8:38 pm

Congratulations to you! I'm wishing/hoping desperately for my own NED status. Do you attribute your success to the HAI pump?
F 45, single mother to son, 7 and daughter, 3
DX: stage 4 Rectal Cancer June 2019
Tumor Location: ? cm above anal verge
Tumor type: Adenocarcinoma
Tumor size: 5 cm
Tumor grade: ?
TNM code: ?
Stage : Stage IV-B
# of cancerous lymph nodes: ?
Mets: Numerous mets to liver, lungs
CEA: 22 in July; 11 as of August 15, 7 as of Sept 20
MSI status: MSS
KRAS/BRAF status: KRAS mutation
surgery: TBD
Ostomy surgery: TBD
Radiation therapy: TBD
Chemotherapy : CAPEOX+Avastin, 6 cycles, with CT scans after 3rd and 6th cycle.

mariane
Posts: 676
Joined: Sun Sep 13, 2015 6:16 pm

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

Postby mariane » Tue Jul 30, 2019 10:56 pm

stu wrote: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


Stu,
Next time, I will let you know. The island is one of my most likely stops on the way to visit my parents. :)
Your mum is truly amazing. We like kayaking as well. We have just bought 2 kayaks and explored Ft Myers area. Very nice. We need to try colder seas. My son is almost as tall as me and needs to develop some muscles :)
mom of now 10 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: 676
Joined: Sun Sep 13, 2015 6:16 pm

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

Postby mariane » Tue Jul 30, 2019 10:58 pm

tater wrote: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.

Tater, congratulations to your wife ! 2 years is excellent! Each month takes us closer to safety... :)
mom of now 10 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: 676
Joined: Sun Sep 13, 2015 6:16 pm

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

Postby mariane » Tue Jul 30, 2019 11:03 pm

Jack&KatiesMommy wrote: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

Thank you very much Cynthia!!
I will be forever grateful for your help, patience and answers to my never ending questions. I am so happy that Keytruda is working for you. It has been quite a journey for us both.
Lots of love!
mom of now 10 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: 676
Joined: Sun Sep 13, 2015 6:16 pm

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

Postby mariane » Tue Jul 30, 2019 11:12 pm

juliej wrote: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

Thank you very much Julie!
You supported me during my multiple surgeries and like Cynthia sent so many good advises. I will never forget.
I always think that I will meet you one day in NY. Yes, we have a lot in common. We are both active. Did you climb more mountains? I remember how you told us how you hiked Mt Hood. Wow!
You are doing a fantastic job on the forum.
Love,
M
mom of now 10 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: 676
Joined: Sun Sep 13, 2015 6:16 pm

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

Postby mariane » Tue Jul 30, 2019 11:18 pm

TinaFish wrote:Congratulations to you! I'm wishing/hoping desperately for my own NED status. Do you attribute your success to the HAI pump?

Thank you very much Tina!
Dr. Kemeny told me yesterday that I wouldn't have make it, if I had not come to MSKCC 4 years ago. She was so radiant yesterday. As Julie wrote we were both one of the least likely to survive.Almost exactly 4 years ago, I signed the palliative treatment consent form here , in Atlanta.
Good luck!
mom of now 10 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!

User avatar
HopeForJesse
Posts: 249
Joined: Wed Feb 24, 2016 9:39 am
Location: Philadelphia

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

Postby HopeForJesse » Wed Jul 31, 2019 9:17 pm

Hi Mariane!
I am so very happy to hear this. I hope you are enjoying the summer and send big congratulations and praise to God for your healing.
Thank you for sharing good news. Really needs to hear this tonight. Jesse is so tired. 5FU added back recently and I think he is approaching 70+ rounds of chemo infusions. Too many to count...
But, we have a weekend trip planned to forget it all for a few days :)
XO
Mary
DH DX 01/16 49 YO inop RC stage IV liver mets
MSS TP53 APC,BRCA2
12/15 CEA 241, FOLFOX to 11/16
LAR/ileo 5/16 Clear margins 1/29 nodes
HAI, reversal, liver resections7/16
FUDR 8/16 -NED 3 mos
Rising CEA 3/17 Xeloda, 5/17 -12/17 Erbitux & Iri stable but lung/lymph mets CEA 2.7
5/18 5 days SBRT radiation to sternum 10/22/18 surgery to remove zyphoid process met
6/11/19 5FU added to cetuximab and irinotecan CEA 16
Ephesians 3:20 Our God is able to do immeasurably more than we can ask or imagine!

fumaros
Posts: 271
Joined: Sat Jul 02, 2016 10:26 pm
Location: Syracuse, NY
Contact:

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

Postby fumaros » Thu Aug 01, 2019 5:50 pm

Your news is amazing and encouraging.
Diagnosed 4/8/16, age 29
Colectomy 4/20/16
Stage III, T4bN1 Tumor 7x6.5x2. Muscinous Adenocarcinoma with SRC features
2/16 lymph nodes
Stage IV, Peri mets 5/2019
CEA 4/14/16 - 16.8
CEA 6/2/16 - 1.9
CEA 6/17/16 - 0.87, 7/16 - 1.33, 12/16 - 1.14, 4/17 - 0.6, 7/17 - 0.5, 10/17 - 0.9, 3/19 -5.8, 4/19 -10
FOLFOX began 6/24/16 - 11/25/16, FOLFIRI - 5/10/19
10 round FOLFOX, 2 round 5-FU & Leucovorin, 1 round FOLFIRI
MRI & CT 8/16 - NED, CT 12/16 - 10/17 - NED

User avatar
cptmac
Posts: 1184
Joined: Mon Nov 19, 2007 3:15 pm
Facebook Username: Dorothy McGrath

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

Postby cptmac » Fri Sep 13, 2019 10:47 pm

Congratulations Mariane!!! I'm thrilled!!!

Thank you for sharing your great news with everyone!!! It gives so many people so much hope.

I wish you continued survivorship!!!
cptmac
As long as you're alive, there is hope.
dx 7/04 stage IV
colon resection 8/04
liver resection 9/04 with HAI pump installed
Stage II trial w irinotecan as systemic and FUDR for direct chemo to liver via HAI pump
Cured since 9/04

boxhill
Posts: 404
Joined: Fri Apr 06, 2018 11:40 am

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

Postby boxhill » Sat Sep 14, 2019 11:08 am

Congratultions, Mariane, and thanks for posting. It is so encouraging to the rest of us.
F, 64 at DX CRC Stage IV
3/17/18 blockage, r hemi
11 of 25 nodes,5 mesentery nodes
5mm liver met out
pT3 pN2b pM1
BRAF wild, KRAS G12D
dMMR, MSI-H
5/4/18 FOLFOX
Neulasta 6/28
7/9/18 CT NED
11/20/18 CT NED. Enlarged spleen.
12/20/18 Liver MRI 5mm liver met? and 2 lymph nodes in porta hepatis
12/31/18 Keytruda
6/5/19 Triphasic CT LN and spleen normal, Liver node stable
6/28/19 Pause Keytruda, predisone for joint pain
7/31/19 Restart Keytruda
9/10/19 CT stable


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



Who is online

Users browsing this forum: Google [Bot], MetastaticEquilibria, Rock_Robster and 36 guests