Back to NED!

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ginabeewell
Posts: 532
Joined: Wed Oct 24, 2018 10:30 am

Back to NED!

Postby ginabeewell » Wed Mar 30, 2022 9:32 pm

Had scans yesterday and the shortest meeting maybe ever with Dr Kemeny today. I’m all clear!

Need to update my signature but for those who haven’t been keeping track, that NED comes after 3.5 years, 37 rounds of chemo, three surgeries, and six days of radiation most recently (this past December). When I started over 80% of my liver was covered in tumor, and I went to five oncologists before finding one who would treat me with true curative intent. I got to NED after my first year but have been battling back recurrences since then.

Ordered a Lingua Franca sweater with upgraded beading that says in cursive, “Still here, bitches!”

Will scan again in two months; until then savoring being healthy!
45 YO mom of twins (9) and lucky stepmom of 14/17 year olds
9/17/18 DX stage 4 CRC w inoperable liver mets CEA 931
10/18 FOLFOX + Vectibix
12/18 typhlitis (7 days in hospital) but largest met down to 5 cm.
12/18 CEA 4.6
1/18 Resume chemo (#6-8)
3/19 HAI pump placement / colon resection
4/19 Resume chemo (#9-19) FOLFOX (no OX) + Vectibix
5/19 CEA 1.3
7/19 liver resection
10/19 liver resection
1/20 NED! CEA 0.6
3/20 two new liver mets; FOLFIRI (5) and then add Vectibix (5)
8/20 CEA 0.7
Resection next?

roadrunner
Posts: 240
Joined: Sun Jan 12, 2020 8:46 pm

Re: Back to NED!

Postby roadrunner » Wed Mar 30, 2022 10:22 pm

That is fabulous! And a fabulous attitude. Really great to hear.
7/19: Rectal cancer: Staged as IIIA, T2N1M0
approx 4.25 cm, low/mid rectum, mod. well diff.
8/22 -10/14 4 rounds FOLFOX neoadjuvant, 3 w/Oxiplatin (side effects/reduced size est. 70-75%)
neoadjuvant chemorad 11/19
4 rounds of FOLFOX July-August 2020
ncCR found 10/20; biopsies negative
TAE 11/20, tumor cells removed, lung nodules orig id’d 6/20 stable Nov 2020
Chest CT 3/30/21 small growth in 2 nodules (3 and 5mm)
VATS 12/8/21 sub-pleural met 7mm.
SBRT for remaining nodule 1/22
CT 3/22: Clear

Koreysue
Posts: 234
Joined: Mon Apr 30, 2018 2:36 pm

Re: Back to NED!

Postby Koreysue » Thu Mar 31, 2022 12:24 am

Well that is fabulous news!
Dx: 6/2017 stage 3 colon cancer
Sigmoid, 2 nodes
CEA at dx: 6.1
Sigmoid Colectomy/folfox (chemo complete January 31, 2018)
CEA 4/2018: 2.4
CEA 7/2018: 3.7
Colonoscopy 8/2018 clean
PET scan 8/20/18 NED
CEA 11/2018: 3.8
CEA 2/2019: 3.2
CT NED 6/18/2019 / 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 (happy to see a lower number)
CEA 5/17/21 4.2
CEA 10/18/21 3.4
colonoscopy 10/2021 10mm polyp

aquarian_asian
Posts: 15
Joined: Wed Jul 07, 2021 7:07 am

Re: Back to NED!

Postby aquarian_asian » Thu Mar 31, 2022 6:46 am

wonderful encouraging news for folks like me. I will need to update my signature soon ( i am stage IIIB)

Thanks
Feb 2021 - Dx Stage3B - rectal cancer (Age is 48, Male)
April 2021 - Radiation - for a week (5 mins x 5 days)
May 2021 - LAR surgery
Pathology: G2, LN+ PVI+, Lymph Nodes 5 out of 22
Temporary Ileostomy
Jun-Aug 2021 - Chemo 4 cycles 3 months (CAPOX)
Feb 2022 - Ileostomy reversal

MadMed
Posts: 123
Joined: Sun May 02, 2021 5:52 pm
Location: Massachusetts

Re: Back to NED!

Postby MadMed » Thu Mar 31, 2022 7:36 am

This is awesome news, really fantastic.
52M DX: RC lower rectum, guessing now 2cm from AV 4/27/2021
T3N0M0 adenocarcinoma with signet ring cell features
Tumor size 30mm
Tumor grade: G3
Baseline CEA 1.0
MSI status: MSS pMMR
Started Folfox 5/12/2021
Switched to FOLFIRINOX from session 2. 8 rounds total.
CT+MRI tumor contained shrunk 80%, no spread to other organs.
CRT started xeloda + 28 days Radiation 9/27-11/04
NED as of 4/06 CT/MRI/sigmoidoscopy
On W&W 04/06/2022

Gravelyguy
Posts: 378
Joined: Thu Jul 05, 2018 6:03 pm

Re: Back to NED!

Postby Gravelyguy » Thu Mar 31, 2022 9:01 am

Awesome Gina! Your news made my day!

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!

Claudine
Posts: 680
Joined: Tue Mar 12, 2019 2:41 pm
Location: Montana

Re: Back to NED!

Postby Claudine » Thu Mar 31, 2022 10:25 am

Fantastic news :D
You're the living proof that one should never give up or take no for an answer.
Wife of Dx 04/18 (51 yo). MSS, KRAS G12A, no primary
Lytic met L4 vertebrae, EBRT 04/18, SBRT 02/19
Resect small intestine 05/18 (no cancer - Crohn's)
Failed adjuvant Xelox ; Folfiri + Avastin 03/19 to 01/20
6.7 cm left adrenal mass 03/19, successful resection 02/20
Multiple small lung nodules (03/19) now gone/calcified
L3-L4-L5 fusion surgery and partial corpectomy 05/20
CEA since 03/19: high 81.1, low 3.2, now 66
MRI 2/11/22: rectal adenocarcinoma pT3 pN0 stage 2A
LAR surgery April 11

User avatar
mobrouser
Posts: 164
Joined: Wed Apr 11, 2018 1:44 pm
Location: Ontario

Re: Back to NED!

Postby mobrouser » Thu Mar 31, 2022 8:56 pm

Very happy to read this.
Enjoy!!!!
CC Dx 102017 age 58
Lap. right hemi-colectomy Dec 2017
Adenocarcinoma ascending colon – 6cm x 6cm x 2cm, Low Grade, penetrates to peritoneum
T4a N2a M0, Stage IIIC
lymph nodes 6 positive out of 18
FOLFOX start Jan/18 end Aug/8 (felt like a year)
CEA - 01/15/18-2.8; 07/29/18-5.3; 09/19-2.4; 03/20-2.7; 09/20-2.9
CT scan 08/18 - Clear; 10/19 - Clear; * 10/20 - 8mm & 6mm nodules in liver
PET scan 09/18 (thought about bringing the cat :wink: ) - Clear
Colonoscopy Dec 7 2018 - Clear - Next in 3 years?

Sunnycd
Posts: 76
Joined: Fri Feb 26, 2021 10:36 am

Re: Back to NED!

Postby Sunnycd » Thu Mar 31, 2022 11:46 pm

So so happy for you!!
DX Feb. ‘21 CC IIB @ 51
Jan. ‘21 ER surgery, temp. colostomy
Sigmoid, adernocarcinoma
T4aN0MX, G2
0/24 lymph nodes
LVI: indefinite
PNI: not identified
Margins: clear
March ‘21 started 4 rounds of CAPOX
06/17/21 last day of CAPOX
06/25/21 CT scan clear
CEA: @ dx 4, post surgery 1.9, post chemo: 2.9; 09/21: 1.5
07/14/21 colostomy reversal
09/24/21 CT clear
10/12/21 colonoscopy; 1 polyp
MSS, RAS/RAF wild, PIK3CA mutant

prayingforccr
Posts: 317
Joined: Sun Jun 28, 2020 4:44 pm

Re: Back to NED!

Postby prayingforccr » Fri Apr 01, 2022 4:41 am

A true warrior!

So, so happy for you.
11/19: colonoscopy
12/19: diagnosed with stage 3 rectal cancer 6+cm tumor
1-3/20: 20 sessions of radiation, mon-fri capecetibine+clinical trial drug m3814
7/20: 8 treatmentsFOLFOX
11/20: Primary tumor had complete response. Possible tumor deposits on latest mri. Biopsy negative for cancer.
5/21: Multiple lung nodules (3-6mm) on ct scan
10/21: md anderson gives me 1 year without treatment/3 years with folfiri/avastin (refused)
3/22 No growth in nodules 6 months…..most showing cavitation.

Bpaint
Posts: 34
Joined: Sun Oct 11, 2020 8:54 pm

Re: Back to NED!

Postby Bpaint » Fri Apr 01, 2022 10:03 am

Congrats Gina! I'm so happy for you!
My husband (age 41 at dx):
8/20 CRC Stage 4. Mets to lungs, liver, distant lymph nodes (25+)
MSS, KRAS wild
CEA 713 at dx
Folfox (12 rounds)
CEA 113
Liver, colon and lymph node resection 4/21
New lung mets, Vectibix monotherapy started 6/21
Stop Vectibix
Start Folfiri + avastin January 2022

DarknessEmbraced
Posts: 3686
Joined: Sat Nov 01, 2014 4:54 pm
Facebook Username: Riann Fletcher
Location: New Brunswick, Canada

Re: Back to NED!

Postby DarknessEmbraced » Sat Apr 02, 2022 7:34 am

That's wonderful news! :)
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! :)

Siti
Posts: 237
Joined: Thu Aug 01, 2019 10:58 am

Re: Back to NED!

Postby Siti » Mon Apr 04, 2022 6:17 pm

I admire your resilience! Very happy to hear the great news.
Wife of DH (54) DX on 5/7/19
Sigmoid | Adenocarcinoma | Grade: G3 | LNs: 30/31
Wild Type for KRAS, NRAS and BRAF
19/7/19 PET-CT Scan: Distant lymph nodes (para-aorta, neck & hip), est. size 0.5-1.5cm.
22/7/19 Surgery: Laparoscopic Colon Resection
26/8/19 Chemo: CAPEOX + Avastin x 7
6/11/19 CT Scan after 3rd cycle, all nodes have shrunk! Yay!! 20/12/19 Last round of Ox (NED)
1/2020 Maintenance: Cap + Avastin
4/2020 Maintenance: switch to Teysuno (S-1) + Avastin due to bad HFS side effects.

utahgal7
Posts: 80
Joined: Fri Sep 11, 2020 12:04 pm

Re: Back to NED!

Postby utahgal7 » Tue Apr 05, 2022 10:55 am

That's amazing! I admire your bravery and resilience. I am really happy for you!
02/20 Rectal Cancer dx - 4 cm mass; located 9 cm from AV
03/20 CEA 2.7; 0.9; 1.4; 0.9; 0.9; 1.2; 1.0; 0.9; 0.8; 1.2
04/20 ST Radiation; 04/20 LAR surgery w/ileostomy
04/20 ypT3N1bM0; MSS; moderately differentiated adenocarcinoma
05/20 CAPEOX
08/20 Ileostomy reversal
09/20 CT scan; suspicious areas in liver; 10/20 MRI liver; dx hemangioma
12/20 CT scan; lung nodules (watch and wait);
07/21, 10/21, 1/22, 5/22 CT scan; (1) lung nodule (right lower lobe 6mm X 7mm)

boxhill
Posts: 787
Joined: Fri Apr 06, 2018 11:40 am

Re: Back to NED!

Postby boxhill » Fri Apr 08, 2022 4:20 pm

What fabulous news! So happy for you and your family.
F, 64 at DX CRC Stage IV
3/17/18 blockage, r hemi
11 of 25 LN,5 mesentery nodes
5mm liver met
pT3 pN2b pM1
BRAF wild, KRAS G12D
dMMR, MSI-H
5/18 FOLFOX
7/18 and 11/18 CT NED
12/18 MRI 5mm liver mass, 2 LNs in porta hepatis
12/31/18 Keytruda
6/19 Multiphasic CT LNs normal, Liver stable
6/28/19 Pause Key, predisone for joint pain
7/31/19 Restart Key
9/19 CT stable
Pain: all fails but Celebrex
12/23/19 CT stable
5/20 MRI stable/NED
6/20 Stop Key
All MRIs NED


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