Still NED!!!!

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DarknessEmbraced
Posts: 3301
Joined: Sat Nov 01, 2014 4:54 pm
Facebook Username: Riann Fletcher
Location: New Brunswick, Canada

Still NED!!!!

Postby DarknessEmbraced » Fri Dec 21, 2018 10:00 am

I found out my yearly CT scans are normal which is wonderful! I think the episodes of horrible abdominal pain and rectal bleeding this year are due to ischemic colitis which I had at the end of 2015 because the symptoms are exactly the same. I've been taking 10mg of my main anti-spasmodic and am starting a daily low dose coated aspirin. The anti-spasmodic increase hasn't helped the pain I have daily due to cramping. My GI may do a colonoscopy in 2019.
Last edited by DarknessEmbraced on Fri Dec 21, 2018 11:04 am, edited 1 time in total.
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

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Jack&KatiesMommy
Posts: 587
Joined: Wed Dec 21, 2011 1:08 pm
Location: Columbus, OH

Re: Still NED!!!!

Postby Jack&KatiesMommy » Fri Dec 21, 2018 10:03 am

Happy Happy! Merry Christmas! May you stay NED forever!!!
Cynthia
Mommy to Jack (8) now (16) and Katie (4) now (12)
(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 mets lymph nodes lung:
05/18: Keytruda (MSS w/Intermediate TMB): 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, .8, 1.1, 1.1, .7
7/18; 9/18; 11/18; 2/19 Clear CT scans

DarknessEmbraced
Posts: 3301
Joined: Sat Nov 01, 2014 4:54 pm
Facebook Username: Riann Fletcher
Location: New Brunswick, Canada

Re: Still NED!!!!

Postby DarknessEmbraced » Fri Dec 21, 2018 10:13 am

Thank you very much Jack&Katie's Mommy! Merry Christmas to you and your family! :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

peanut_8
Posts: 2320
Joined: Sun May 25, 2014 1:31 pm

Re: Still NED!!!!

Postby peanut_8 » Fri Dec 21, 2018 10:58 am

Hooray!!!
female, diagnosed Jan 14, RC stage 2a, age 56
MSS
April 14, 28 chemo/rad with Xeloda
June 14 adjuvant Xeloda 6 rounds
currently NED

Beckster
Posts: 369
Joined: Thu Jan 12, 2017 3:01 pm
Location: New Jersey

Re: Still NED!!!!

Postby Beckster » Fri Dec 21, 2018 11:05 am

Congrats...What a wonderful Christmas gift!
57/Female
DX:(CC) 10/19/16
11/4/16- Lap right hemi(cecum)
CEA- Pre Op (1.9), Pre Chemo (2.5)
Type: Adenocarcinoma
Tumor size:3.5 cm x 2.5 x 0.7 cm
Grade: G3 (path) G2 (pre-op)
TNM: T3N0M0/IIA
LN: 0/24
LVI present
Surgical margins: clear
MSS
12/27/2016 - Capeox, anaphylactic reaction to oxaliplatin on first infusion
1/2/17 to 6/9/17- Xeloda monotherapy
6/17, 12/17, 6/18, 12/18, 6/19 CT Scan NED :D
CEA- 6/17- 3.6, 9/17- 2.8 12/17-2.8, 3/18-3.1, 6/18-3.0, 9/18 2.8, 12/18 2.5 3/19 3.1 6/19 3.1
Clear Colonoscopy 10/17 :D

DarknessEmbraced
Posts: 3301
Joined: Sat Nov 01, 2014 4:54 pm
Facebook Username: Riann Fletcher
Location: New Brunswick, Canada

Re: Still NED!!!!

Postby DarknessEmbraced » Fri Dec 21, 2018 11:25 am

Thank you Beckster and peanut!!! I really do hope my GI will do the colonoscopy because I want the episodes of horrible abdominal pain and rectal bleeding to stop! I had them in July, October and November.
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

Gravelyguy
Posts: 164
Joined: Thu Jul 05, 2018 6:03 pm

Re: Still NED!!!!

Postby Gravelyguy » Fri Dec 21, 2018 11:56 am

Congrats, That is the best Christmas present!

Dave
6/17 dx mCRC 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 clear scans, CEA .9 still NED!
6/11/19 clear scans CEA 1.0

DarknessEmbraced
Posts: 3301
Joined: Sat Nov 01, 2014 4:54 pm
Facebook Username: Riann Fletcher
Location: New Brunswick, Canada

Re: Still NED!!!!

Postby DarknessEmbraced » Fri Dec 21, 2018 12:04 pm

Thank you Gravely! Yes it is!
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

dliu
Posts: 66
Joined: Sun Jun 03, 2018 7:16 am

Re: Still NED!!!!

Postby dliu » Fri Dec 21, 2018 12:10 pm

A great way to close 2018/open 2019! Hoping 2019 also brings relief to the abdominal pain. It's very heartwarming to hear all these good news.
Caring for my mum, 65
Sigmoid resection, multiple liver mets
09/05/2018 Dx Stage IV, 6/11 LN - KRAS G12V
28/05/2018 First round of FOLFOX + Avastin

CEA down from 6000+ (05/2018) to 843 (08/2018) to 377 (11/2018)
9/10 rounds with Oxaliplatin
8/10 rounds with Bevacizumab

Punky44
Posts: 321
Joined: Mon Oct 01, 2018 4:29 pm

Re: Still NED!!!!

Postby Punky44 » Fri Dec 21, 2018 1:03 pm

Woohoo! Congratulations!!
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
Short course radiation 3/14/19 - 3/20/19
Robotically assisted laparoscopic LAR 3/21/19
Pathology report says yT2N0M0 with 0/38 nodes
CEA 4/23: 2.1
6/28/19 Reversal and port out

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

DarknessEmbraced
Posts: 3301
Joined: Sat Nov 01, 2014 4:54 pm
Facebook Username: Riann Fletcher
Location: New Brunswick, Canada

Re: Still NED!!!!

Postby DarknessEmbraced » Fri Dec 21, 2018 1:16 pm

Thank you dliu and Punky!!!! :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

bitchslapped
Posts: 1494
Joined: Tue Sep 09, 2014 3:23 pm
Location: PNW/USA

Re: Still NED!!!!

Postby bitchslapped » Fri Dec 21, 2018 1:31 pm

Take the WINS where you can get 'em for sure; now onto the next for some pain relief.
Congrats, DE.

Best Wishes
BS
DSS,35YO,unresect mCRC DX 7/'14,lvr,LN,peri,rib
FOLFOX+Avstn 4 Rnds d/c 10/'14
Stent 9/'14
FOLFIRI+Avstn 10/'14
Gone From My Sight 2/20/15
Me:garden variety polyps + precancerous polyp, diverticulitis
Carergver x2 DH,DM dbl occupancy,'03-'10
DH dx 47YO mCRC,'04-'07 fried x HAI
DM dx CC 85YO,CC,CHF,stroke,dementia,aphasia

DarknessEmbraced
Posts: 3301
Joined: Sat Nov 01, 2014 4:54 pm
Facebook Username: Riann Fletcher
Location: New Brunswick, Canada

Re: Still NED!!!!

Postby DarknessEmbraced » Fri Dec 21, 2018 1:37 pm

Thank you BS! You're right we take the wins! :D I wish you all the best as 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

Hopegirl
Posts: 53
Joined: Wed Nov 08, 2017 10:06 am
Location: Modesto ca

Re: Still NED!!!!

Postby Hopegirl » Fri Dec 21, 2018 5:01 pm

Congrats! Merry Christmas
Diagnosed 10/11/17 at 46 years old . Now 47. 4 kids 26,22,12,11
Colon cancer Stage 3b 5/26 lymph nodes positive
Surgery 10/19/17
Cea 0.6 11/15/17
Finished last Xeloda pills 6 cycles 4-10-2018
Did only 3 infusions of oxilaplatin due to bad neuropathy
5-8-2018 Cat Scan clear
5-8-18 Cea 0.6
5-10-18 Port removed
8-7-2018 Cea 0.7
11-13-2018 Clear Scan
11-13-2018 Cea 1.4
12-11-2018 Clean colonoscopy
3-13-2019 Cea 0.8
Pray for NED Always

lpas
Posts: 1009
Joined: Wed Nov 19, 2014 11:11 pm

Re: Still NED!!!!

Postby lpas » Fri Dec 21, 2018 5:35 pm

Congratulations!! Really great news! I hope they find the cause of your abdominal pain soon--it seems like you've been dealing with this for a very long time now. Happy Holidays!
11/14 Dx sigmoid CC @ 45yo
12/14 Colectomy + hysterectomy
Stage IIIB, T3N1bM0, 2/20 nodes, MSS, G2, KRAS(A146T), TP53, SMAD4, ERBB2, CEA 1.0
2/15-7/15 XELOX & Celebrex
2/19 clean scope
5/19 clean-ish CT (watching a new 4mm lung thingie--likely mucus plug)
Ongoing celecoxib, cimetidine & other targeted supplements
Mom to a 5 & 7yo


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