Guess who was told she's NED??

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AmyG
Posts: 279
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

Claudine
Posts: 173
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 04/2018 (51 yo). MSS, KRAS mutated G12A
No primary, lytic tumor L4 vertebrae, CEA 10
Radiation 04/2018
Resection small intestine 05/18 (no cancer found - Crohn's)
Xelox * 6, 05/2018 to 10/2018
6.7 cm left adrenal mass 03/14/2019, 4.4 cm 05/21, 4.1 cm 09/16
SBRT L4 02/2019
Folfiri + Avastin
CEA since 03/15: 58, then low of 3.2 now at 5.0 (twice)
Scan 03/14: Multiple small lung nodules
Scan 05/21: shrinking
Scan 09/16: lungs show no abnormalities (YAY!!!)

Marie25
Posts: 21
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
Stage 3 T3N+
Folfox 8/2019
Radiation tbd
Surgery tbd

jsbsf
Posts: 19
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
8/23 Colonoscopy, 5+cm mass
8/26 CT ~1cm liver met?
9/6 PET: liver spot
9/16 MSS. baseline CEA is 4.1; MRI: 2 liver mets: 2.7 & 7mm
9/23 Port
9/30 Start FOLFOX
10/4 Larger liver met ~3.7cm (raised concern), colon tumor stable.
CEA: 10/13,12.5;10/27,4.7;11/12,3.3
11/5 both liver mets almost 2/3 smaller.

User avatar
horizon
Posts: 1519
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 8 years NED). Is this real life?

Claudine
Posts: 173
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 04/2018 (51 yo). MSS, KRAS mutated G12A
No primary, lytic tumor L4 vertebrae, CEA 10
Radiation 04/2018
Resection small intestine 05/18 (no cancer found - Crohn's)
Xelox * 6, 05/2018 to 10/2018
6.7 cm left adrenal mass 03/14/2019, 4.4 cm 05/21, 4.1 cm 09/16
SBRT L4 02/2019
Folfiri + Avastin
CEA since 03/15: 58, then low of 3.2 now at 5.0 (twice)
Scan 03/14: Multiple small lung nodules
Scan 05/21: shrinking
Scan 09/16: lungs show no abnormalities (YAY!!!)

AmyG
Posts: 279
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

AlexandraZ
Posts: 70
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: 5971
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 - 10 years and counting!

Claudine
Posts: 173
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 04/2018 (51 yo). MSS, KRAS mutated G12A
No primary, lytic tumor L4 vertebrae, CEA 10
Radiation 04/2018
Resection small intestine 05/18 (no cancer found - Crohn's)
Xelox * 6, 05/2018 to 10/2018
6.7 cm left adrenal mass 03/14/2019, 4.4 cm 05/21, 4.1 cm 09/16
SBRT L4 02/2019
Folfiri + Avastin
CEA since 03/15: 58, then low of 3.2 now at 5.0 (twice)
Scan 03/14: Multiple small lung nodules
Scan 05/21: shrinking
Scan 09/16: lungs show no abnormalities (YAY!!!)

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: 65
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 29, 2018 Colonoscopy
3cm leision adenocarcinoma
Operated August 8, 2018 Had APR removed Anus, Rectum,Sigmoid Colon
Barbie Butt permanent Colostomy
March 5, 2019. CT 2 lung nodules repeat CT 6 MonthSept. 10,
April 29, 2019 HyperDense Liesion 1.8 x 1.8 cm
July 22 2019; Monday 1 radiation painful dense Pelvis tumor 4-29-2019 ( more tired than usual) total of 5 radiations tumor is a recurrence of original colon cancer plus met to lungs
July 24, 2019 Wednesday 2nd radiation treament.

Siti
Posts: 71
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 :)
Wife of DH (54) DX on 5/7/19
CEA value: 1.2
T loc: Sigmoid
T type: Adenocarcinoma
T grade: G3
Pos 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 9
6/11/19 CT Scan after 3rd cycle, all nodes have shrunk! Yay!!

fumaros
Posts: 269
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: 3362
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


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