A very merry NED update

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mandosquiddy
Posts: 35
Joined: Sat Oct 06, 2018 11:45 am
Location: Colorado
Contact:

A very merry NED update

Postby mandosquiddy » Wed Dec 12, 2018 3:54 pm

Today my oncologist told me my latest CT scan had no evidence of disease. My CEA came in at 1.8. In September it was 27. This is the first time since my cancer journey started that my CEA has been in a normal range. On January 3rd I'll will have my illeostomy reversal surgery. I was also told back in the summer that I was NED, then my CEA began to rise and a new tumor was found, so I know there are no guarantees. However, I am optimistic and will now focus on reversal and getting healthy.

I'll have my next scan and bloodwork in March. Hoping to have consecutive NED appointments for the first time. I just wanted to post some good news. I have some details about my journey in the signature and would be happy to answer questions anyone might have. I haven't posted a lot here but have received plenty of knowledge and support. Thanks!
4/2017 DX: sigmoid colon cancer
colectomy/colostomy
stage II with one positive margin
5/2017 - 11/17 12 rounds of FOLFOX
11/17 - 12/17 Increase in back pain and testicular pain.
CEA increased, CT scan indicated mass on rectal portion of colon
1/18 - 2/18 25 rounds of radiation treatment
5/18 surgery, interoperative radiation, bladder/ureter modification
7/18 normal blood work and CT scan
9/18 increased CEA, mass on small intestine
10/18 Debulking surgery/illeostomy
1/19 Ostomy reversal
12/19 CEA 1.3!!!!

DarknessEmbraced
Posts: 3816
Joined: Sat Nov 01, 2014 4:54 pm
Facebook Username: Riann Fletcher
Location: New Brunswick, Canada

Re: A very merry NED update

Postby DarknessEmbraced » Wed Dec 12, 2018 6:29 pm

That's wonderful news! I hope your surgery goes well! :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
Clear colonoscopy 09/23/19
Clear 5 year scans 11/21/19- Considered cured! :)

Punky44
Posts: 498
Joined: Mon Oct 01, 2018 4:29 pm

Re: A very merry NED update

Postby Punky44 » Thu Dec 13, 2018 2:11 am

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; 2.4; 3.0; 3.4; 3.1; 3.4; 3.0; 3.1; 2.6
Latest update: 8/21/23 Clear CT with CEA 2.6!

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

Koreysue
Posts: 258
Joined: Mon Apr 30, 2018 2:36 pm

Re: A very merry NED update

Postby Koreysue » Thu Dec 13, 2018 11:47 am

Awesome news!
Dx: 6/2017 stage 3 CC
Sigmoid, 2 nodes
CEA at dx: 6.1
Sigmoid Colectomy/folfox (last chemo (1/31/18)
CEA 4/2018: 2.4
CEA 7/2018: 3.7
Colonoscopy 8/18 clean
PET scan 8/20/18 NED
CEA 11/2018: 3.8
CEA 2/2019: 3.2
CT NED 6/18/19 / CEA : 3.4
CEA 10/21/19: 3.2
CEA 3/9/20: 3.8
CT NED /CEA 6/17/20: 3.8
CEA 11/4/20 4.6 <——— whyyyy? (will retest in a few weeks)
CT NED 12/1/20 CEA: 3.5
CEA 5/21 4.2
CEA 10/21 3.4
colonoscopy 10/21 10mm polyp
CEA 4/22 3.7
CEA 7/22 3.8
CEA 12/22 4
CEA 1/22 3.2 and NED 5yr scan

Gravelyguy
Posts: 382
Joined: Thu Jul 05, 2018 6:03 pm

Re: A very merry NED update

Postby Gravelyguy » Thu Dec 13, 2018 12:39 pm

That is wonderful, congrats!!

Dave
6/17 dx mRC t3n1m1 very low rectal tumor 2 liver Mets 1.3 cm and .9 cm

6/17 begin 4 rounds Folfox w/Vectibix
9/17 short course radiation
10/17 rectal and liver resection LAR with coloanal anastomosis (no rectum left)
11/17-3/18 8 rounds Folfox
6/18 still NED!! Takedown
8/28/18 still NED! CEA .8 new low for me
10/18/18 colonoscopy clear
12/12/18 CEA .9 still NED!
6/11/19 CEA 1.0
12/19/19 CEA 1.0 still NED!
6/17/20 CEA 1.1 still NED!
12/15/20 CEA 1.1still NED!
12/16/21 CEA 1.2 still NED!


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