Guess who was told she's NED??

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AmyG
Posts: 371
Joined: Tue Dec 25, 2018 8:08 pm

Re: Guess who was told she's NED??

Postby AmyG » Tue Sep 17, 2019 12:28 pm

Thanks yall. :D

Have a CT next week then see my oncologist 10/1 to determine when I'm finishing my last 5 rounds of chemo. I'm feeling wonderful, but reoccurrence is always lurking in the back of my mind. I mean, I realize a huge percentage of stage 4 folks have it come back, but there's also those people that DON'T. I want to be on that side of the statistic, but I'm trying to prepare myself to hear the "It's back. " news. :roll:

But cancer doesn't define me. It does not rule the roost. It's a bump in the road, a side quest of my main storyline. If it does come back, I'm pretty sure I still have a lot of weapons at my disposal. :twisted:

Hope all yall are having a lovely day!
42 dx @ 9wks pregnant w/baby #8 8/18
Sigmoid colon resection 9/18
Adenocarcinoma, G2, T3N0M0..or so we thought
KRAS/BRAF wild
Liver biopsy is malignant, stage iv now boys!
Delivered healthy baby 3/19
FOLFOX + Avastin 5/19
CEA 167 to 24 after 4 rounds
Liver resection 8/28/19
NED!! CEA 2.3
CEA 5.8 idk wtf is up with that, but everything else is clear!
CEA 3.7 make up your damn mind...
CEA 1.5 that's a new low!

claudine
Posts: 809
Joined: Tue Mar 12, 2019 2:41 pm
Location: Montana

Re: Guess who was told she's NED??

Postby claudine » Tue Sep 17, 2019 1:00 pm

Way to go Amy! I guess that's one thing this effin' disease teaches us - how to better live in the moment, enjoy every little thing, put pesky problems in perspective... Enjoy your NED time!!
Wife of Dx 04/18 (51 yo). MSS, KRAS G12A, no primary

Tumors: L4 04/18; left adrenal gland & small lung nodules 03/19
rectum 02/22 (pT3 pN0 stage 2A); L3 09/22

Surgeries: intestinal resect. 05/18 (no cancer - Crohn's); adrenalectomy 02/20
L3-L4-L5 fusion and corpectomy 05/20; LAR 04/22; ileo reversal 09/22
L2-L3 fusion and corpectomy 09/22

Treatments: EBRT 04/18; SBRT 02/19; Failed adjuvant Xelox ; Folfiri/Avastin 03/19 - 01/20
adjuvant chemorad (Xeloda) 06/22; SBRT 11/22; Xeloda/Avastin since 01/24

Marie25
Posts: 40
Joined: Tue Aug 20, 2019 9:32 am

Re: Guess who was told she's NED??

Postby Marie25 » Tue Sep 17, 2019 4:05 pm

Awesome!!
Supporter to my husband
Rectal adenocarcinoma
Folfox 8/2019
Short Course Radiation January 2020
Surgery January 2020
T3 N0 stage 2A
0/42 lymph nodes

jsbsf
Posts: 107
Joined: Sat Aug 24, 2019 6:01 am
Location: San Francisco

Re: Guess who was told she's NED??

Postby jsbsf » Tue Sep 17, 2019 9:10 pm

This made my day! Very happy for you.
DH 61
2019 4A t3 n2 m1a
8/23 C-scopy, 5+cm mass. CEA:4.1
9/16 MSS. MRI: 2 lvr mets: 2.7 & 7mm
9/30 Start FOLFOX 1-6
10/4 Lg lvr met ~3.7cm, pri tmr stable.
CEA: 10/13,12.5;10/27-12/8 btw 4.7 & 3.1
11/5 both lvr mets ~ 2/3 smaller.
12/17 PET: significant improv.
2020
MWA 2/5, Lap resection 2/11
CEA: 3/1-5/31 btw 2.1&2.9
3/2 start FOLFOX 7-12
7/23-29 EBRT
10/2/2020 NED/W&W
4/2022 EUS-FNA,MRI: recur.;
5/2022:CT scan no mets. APR.
7-12/2023 Xeloda
4/2023 CT/MRI NED

User avatar
horizon
Posts: 1669
Joined: Tue Apr 12, 2011 10:10 pm

Re: Guess who was told she's NED??

Postby horizon » Wed Sep 18, 2019 10:38 am

So happy for you. Congrats!
I'm just a dude who still can't believe he had a resection and went through chemo (currently 13 years NED). Is this real life?

claudine
Posts: 809
Joined: Tue Mar 12, 2019 2:41 pm
Location: Montana

Re: Guess who was told she's NED??

Postby claudine » Wed Sep 18, 2019 11:04 am

I'll jump on Amy's good news bandwagon. Just got out of the oncologist's office - DH had his 3-month scan done on Monday - and the first words out of his mouth were "You scan looks good!". The adrenal gland tumor is still shrinking (albeit more slowly, 7% decrease since late May vs 35% between March and May), the vertebrae tumor looks necrotic, and the lung lesions are stable. Nothing new, nothing growing. As much as we'd love to completely destroy this beast, this may be the best we can hope for. Since he tolerates Folfiri + Avastin rather well, DH will do another 6 cycles.
I asked about Vitamin D and he only recommends the "normal" dose (2000mg/day), but since DH wasn't taking any, that should be a good start.
Phew! I'll sleep better tonight. Scanxiety was pretty bad last night...
Wife of Dx 04/18 (51 yo). MSS, KRAS G12A, no primary

Tumors: L4 04/18; left adrenal gland & small lung nodules 03/19
rectum 02/22 (pT3 pN0 stage 2A); L3 09/22

Surgeries: intestinal resect. 05/18 (no cancer - Crohn's); adrenalectomy 02/20
L3-L4-L5 fusion and corpectomy 05/20; LAR 04/22; ileo reversal 09/22
L2-L3 fusion and corpectomy 09/22

Treatments: EBRT 04/18; SBRT 02/19; Failed adjuvant Xelox ; Folfiri/Avastin 03/19 - 01/20
adjuvant chemorad (Xeloda) 06/22; SBRT 11/22; Xeloda/Avastin since 01/24

AmyG
Posts: 371
Joined: Tue Dec 25, 2018 8:08 pm

Re: Guess who was told she's NED??

Postby AmyG » Wed Sep 18, 2019 12:52 pm

That's fabulous news!!!!
42 dx @ 9wks pregnant w/baby #8 8/18
Sigmoid colon resection 9/18
Adenocarcinoma, G2, T3N0M0..or so we thought
KRAS/BRAF wild
Liver biopsy is malignant, stage iv now boys!
Delivered healthy baby 3/19
FOLFOX + Avastin 5/19
CEA 167 to 24 after 4 rounds
Liver resection 8/28/19
NED!! CEA 2.3
CEA 5.8 idk wtf is up with that, but everything else is clear!
CEA 3.7 make up your damn mind...
CEA 1.5 that's a new low!

AlexandraZ
Posts: 178
Joined: Fri Aug 23, 2019 8:25 am

Re: Guess who was told she's NED??

Postby AlexandraZ » Wed Sep 18, 2019 1:00 pm

Claudine wrote:I'll jump on Amy's good news bandwagon. Just got out of the oncologist's office - DH had his 3-month scan done on Monday - and the first words out of his mouth were "You scan looks good!". The adrenal gland tumor is still shrinking (albeit more slowly, 7% decrease since late May vs 35% between March and May), the vertebrae tumor looks necrotic, and the lung lesions are stable. Nothing new, nothing growing. As much as we'd love to completely destroy this beast, this may be the best we can hope for. Since he tolerates Folfiri + Avastin rather well, DH will do another 6 cycles.
I asked about Vitamin D and he only recommends the "normal" dose (2000mg/day), but since DH wasn't taking any, that should be a good start.
Phew! I'll sleep better tonight. Scanxiety was pretty bad last night...


Yay, that's great news!!! I'm so happy for you. I understand the scanxiety soooooo well. It's so damn nerve-wracking. How could they tell it was necrotic? Is that visible on a CT scan or only a PET scan?
Boyfriend 28yo dx February 2019, CEA 70,480
Stage 4 CRC with multiple mets to liver & lungs
KRAS, NRAS, BRAF wild type, MSS
12x FOLFIRI + Vectibix
September 2019 CEA 210, 60% reduction in size, chemo break!

Lee
Posts: 6207
Joined: Sun Apr 16, 2006 4:09 pm

Re: Guess who was told she's NED??

Postby Lee » Wed Sep 18, 2019 1:00 pm

Totally AWESOME

MAY you ALWAYS reside in NEDville

Congratulations on the wonderful news,

Lee
rectal cancer - April 2004
46 yrs old at diagnoses
stage III C - 6/13 lymph positive
radiation - 6 weeks
surgery - August 2004/hernia repair 2014
permanent colostomy
chemo - FOLFOX
NED - 16 years and counting!

claudine
Posts: 809
Joined: Tue Mar 12, 2019 2:41 pm
Location: Montana

Re: Guess who was told she's NED??

Postby claudine » Wed Sep 18, 2019 1:10 pm

AlexandraZ wrote:
Claudine wrote:I'll jump on Amy's good news bandwagon. Just got out of the oncologist's office - DH had his 3-month scan done on Monday - and the first words out of his mouth were "You scan looks good!". The adrenal gland tumor is still shrinking (albeit more slowly, 7% decrease since late May vs 35% between March and May), the vertebrae tumor looks necrotic, and the lung lesions are stable. Nothing new, nothing growing. As much as we'd love to completely destroy this beast, this may be the best we can hope for. Since he tolerates Folfiri + Avastin rather well, DH will do another 6 cycles.
I asked about Vitamin D and he only recommends the "normal" dose (2000mg/day), but since DH wasn't taking any, that should be a good start.
Phew! I'll sleep better tonight. Scanxiety was pretty bad last night...


Yay, that's great news!!! I'm so happy for you. I understand the scanxiety soooooo well. It's so damn nerve-wracking. How could they tell it was necrotic? Is that visible on a CT scan or only a PET scan?


I'm not sure. I'm impatient to get home, log onto DH's patient page and read the scan report myself. Last time was the same, the onc just said a few things yet there was so much more info on the report!
Wife of Dx 04/18 (51 yo). MSS, KRAS G12A, no primary

Tumors: L4 04/18; left adrenal gland & small lung nodules 03/19
rectum 02/22 (pT3 pN0 stage 2A); L3 09/22

Surgeries: intestinal resect. 05/18 (no cancer - Crohn's); adrenalectomy 02/20
L3-L4-L5 fusion and corpectomy 05/20; LAR 04/22; ileo reversal 09/22
L2-L3 fusion and corpectomy 09/22

Treatments: EBRT 04/18; SBRT 02/19; Failed adjuvant Xelox ; Folfiri/Avastin 03/19 - 01/20
adjuvant chemorad (Xeloda) 06/22; SBRT 11/22; Xeloda/Avastin since 01/24

TinaFish
Posts: 178
Joined: Sun Jul 21, 2019 10:11 am

Re: Guess who was told she's NED??

Postby TinaFish » Wed Sep 18, 2019 10:47 pm

So happy for you! And news like this gives the rest of us hope for ourselves too! Congratulations!!
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.

Gloriamazz
Posts: 89
Joined: Thu Jul 12, 2018 1:59 pm
Facebook Username: gloriamazz@ yahoo.com
Location: Ohio
Contact:

Re: Guess who was told she's NED??

Postby Gloriamazz » Thu Sep 19, 2019 3:38 am

So happy for you. Way to go!!!
I was stage 3 rectal cancer. Operated on August 8 have colostomy and Barbie butt.

Six months later metastatic to Pelvis them to lungs

Had. 5 radiation treatments.

Going for CS this Friday. I am more nervous than what I
Thought.

Going by myself. Don't like that.
June, scope
2.6 adenocarcinoma
8/8/18 APR
Stoma
March 19 CT 2 lung N.
April 29, 2019 Pelvis TMR 1.8 x 1.8 cm

7/22 - 7/29/ 2019 5 radi
no chemo 10 mo.
6-10-19 Folfox, Oxill
2nd Irinotecan , Folferi, FU5
12/14/2020, off folferi lung nods new
break going on pill drug Jan 2021
1/19/22, appt 2nd opinion wait to start Vectivix
2 mos no CHEMO
MMR
MSI/stable/HER2
1/2/2021 - round 1 Vectibix
Oligometastatic (NSCLC)

Siti
Posts: 269
Joined: Thu Aug 01, 2019 10:58 am

Re: Guess who was told she's NED??

Postby Siti » Thu Sep 19, 2019 10:14 am

Congratulations Amy! Love your positivity and happy to hear the great news!! I hope my husband would be NED too with a good response to chemo :)
DH (54) DX on 5/7/19
Sigmoid|G3|LN:30/31|MSS|WT KRAS, NRAS, BRAF
7/19 PET distant LN para-aorta neck hip (0.5-1.5cm)
7/19 Lap resection
26/8 to 20/12/19 CAPEOX+Bev 7x
6/11/19 CT 3 cycle LN shrunk
1/20 Cap+Bev
4/20 TS-1+Bev due to bad HFS
NED 4 years
8/23 PET recurrence chest LN growing since Feb. CEA May(4.5>5.1>5.9)
9/23 Stopped Bev, CEA Sept(8.7) Radio 17x
11/23 PET 1+ supraclavicular LN, CEA (3.4>2.5)
12/23 Lymphadenectomy
1/24 Narrow margins, 1/5 +LN, 1.4cm +tissue, TMB (19)

fumaros
Posts: 273
Joined: Sat Jul 02, 2016 10:26 pm
Location: Syracuse, NY
Contact:

Re: Guess who was told she's NED??

Postby fumaros » Thu Sep 19, 2019 3:59 pm

wow wow wee
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

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

Re: Guess who was told she's NED??

Postby DarknessEmbraced » Sat Sep 21, 2019 7:39 am

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
Clear colonoscopy 09/23/19
Clear 5 year scans 11/21/19- Considered cured! :)


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