Checking in to say Hello. Stage IV still NED

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Mattie
Posts: 60
Joined: Fri Mar 07, 2014 1:06 am

Checking in to say Hello. Stage IV still NED

Postby Mattie » Sun Jan 06, 2019 4:41 pm

Hi all,

Happy new year. I don't post often, but happy to say I'll be starting year #10 NED. Still doing avastin only (since I dropped xeloda 9/17).

I hope everyone has a great year and praying for new breakthroughs for us all this year.
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.
1/19 still NED sticking with Avastin only

stu
Posts: 1037
Joined: Sat Aug 17, 2013 5:46 pm

Re: Checking in to say Hello. Stage IV still NED

Postby stu » Sun Jan 06, 2019 4:55 pm

How lovely to hear from you . My mum is ten years this year too . It is fantastic and s great big push to the stage 4 stats .
We are holding out for a big breakthrough this year too .
Take care and stay well ,
Court
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 .

plastikos
Posts: 326
Joined: Wed Jan 14, 2015 6:09 am

Re: Checking in to say Hello. Stage IV still NED

Postby plastikos » Sun Jan 06, 2019 6:56 pm

Amazing. Thanks for sharing your story.
St. IV Colon CA @ 37, male, Kras wild, MSI-high (2014)
11/2014 Right Hemicolectomy + Liver Resection
12/2014 - 6/2015 FOLFOX + Cetuximab
10/2015 - Recurrence liver
Liver resection 10/2015
FOLFIRI 11/2015 - 5/2016
Recurrence liver, nodes 11/2016
Pembrolizumab started 12/2016 -> pseudoprogression(?) -> biliary obstruction -> biliary stenting
Chemo 4x: most mets inactive and smaller on PET-CT
March 2017 - Back on Pembrolizumab again
Sept 2017 - SIRT - > NED

Punky44
Posts: 229
Joined: Mon Oct 01, 2018 4:29 pm

Re: Checking in to say Hello. Stage IV still NED

Postby Punky44 » Sun Jan 06, 2019 8:55 pm

That’s awesome! Congrats!
Caregiver to my amazing mom (68)
10/1/18 DX with rectal cancer; CEA 17 at diagnosis
MRI/CT/PET puts staging at T3N2M0
Total neoadjuvant therapy:
8 rounds Folfox 11/5/18 - 2/11/19; CEA dropped to 6.2
Short course radiation 3/14/19 - 3/20/19
Robotically assisted laparoscopic LAR 3/21/19
Pathology report says yT2N0M0 with 0/38 nodes

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

SGNYC
Posts: 34
Joined: Mon Sep 03, 2018 9:20 pm

Re: Checking in to say Hello. Stage IV still NED

Postby SGNYC » Sun Jan 06, 2019 11:42 pm

Thank you for sharing this - it gives up so much optimism and we can share in your joy! Best!
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

DarknessEmbraced
Posts: 3256
Joined: Sat Nov 01, 2014 4:54 pm
Facebook Username: Riann Fletcher
Location: New Brunswick, Canada

Re: Checking in to say Hello. Stage IV still NED

Postby DarknessEmbraced » Sat Jan 12, 2019 1:50 pm

Congratulations! That's wonderful news! :D
Diagnosed 10/28/14, age 36
Colon Resection 11/20/14, LAR (no illeo)
Stage 2a colon cancer, T3NOMO
Lymph-vascular invasion undetermined
0/22 lymph nodes
No chemo, no radiation
Clear Colonoscopy 04/29/15
NED 10/20/15
Ischemic Colitis 01/21/16
NED 11/10/16
CT Scan moved up due to high CEA 08/21/17
NED 09/25/17
NED 12/21/18

hopeful1
Posts: 8
Joined: Wed Jan 21, 2015 5:39 am

Re: Checking in to say Hello. Stage IV still NED

Postby hopeful1 » Mon Jan 14, 2019 6:39 am

Thanks for posting. Love the encouragement.
Husband diagnosed with stage III a 2013.
Bowel resection and Folfox 2013/14. CEA less than 3.
Reversal ileostomy 2014.
6 monthly CT's NED 3 monthly CEA's slow increase to 5's.
PET scan NED for bowel cancer. Early stage thyroid cancer.
Thyroidectomy 2015. CEA's still in 5's. NED on CT.
2017 small liver mass. CEA 35.Liver resection and Folfox CEA less than 3.
November 2018 CEA 18. PET scan - tiny tumour in lymph node near liver. Node resection
2019 CEA still 9. NED on PET scan.

lakeswim
Posts: 193
Joined: Sat Mar 31, 2018 9:37 am

Re: Checking in to say Hello. Stage IV still NED

Postby lakeswim » Mon Jan 14, 2019 11:54 am

Thank you for posting. Such good news. Much love and hope to you for many more.
50 - F
Mom to 2 teens
RC - dgns 3/18 at age 49
Adenocarcinoma
10-11 cm frm anal verge ("large")
Stage 3a - T4N0M0
FOLFOX May -Sept '18
Capecetabine + Radiation - 28 sessions - Oct - Nov 2018
Jan 19 - Tumor gone but determining next steps

User avatar
DBF
Posts: 307
Joined: Fri Jun 07, 2013 1:44 pm
Facebook Username: https://www.facebook.com/#!/profile.php?id=1000008
Location: New York

Re: Checking in to say Hello. Stage IV still NED

Postby DBF » Wed Jan 16, 2019 8:12 pm

Yay! Congrats on the great news. That’s awesome.
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, 9 & 5


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