Almost afraid to say it but NED for 5 months now?

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Maddielolo
Posts: 140
Joined: Tue Apr 08, 2014 4:57 pm

Re: Almost afraid to say it but NED for 5 months now?

Postby Maddielolo » Wed May 11, 2016 10:14 pm

So happy; certainly worth communicating your story, and sharing such good news!

Steph20021
Posts: 553
Joined: Sat Dec 27, 2014 4:58 pm
Location: Ontario, Canada

Re: Almost afraid to say it but NED for 5 months now?

Postby Steph20021 » Thu May 12, 2016 8:33 am

Thank you for posting Cynthia. And best of luck in August.
DX 1/31/14 @ 33- SPS-T4a(invades visceral peri), N2a(6/106 LN), M1a(ovary) (Stage 4a) MSS; BRAF V600E
2/1/14-subtotal col, lost R ovary, temp ileo
3/14-9/14- folfox; sepsis
11/14-CT/PET: L ovary met, pelvic met, (?)ghost liver met(?)
12/14-folfiri -13 rds kept me stable from 3/15-6/15
8/15-HIPEC, NED
09/15- cea 0.9
05/16- recurrence in abdo wall and lymph nodes
01/17- pulmonary embolism
02/17- 1 wk radiation to abdo wall
08/16- on folfiri
01/18-folfox
11/18- Beacon trial-encorafenib & cetuximab

CatherineG inAF
Posts: 34
Joined: Tue May 10, 2016 7:39 am

Re: Almost afraid to say it but NED for 5 months now?

Postby CatherineG inAF » Thu May 12, 2016 8:38 am

Thank you for posting this. I am terrified of the large unlnowns and I am so happy to promising stories.
53 & Female
Diagnosed in Thailand
DX: Rectal Cancer (RC)
Tumor Location: Rectum
Tumor type: invasive adenocarcinoma
Tumor size: 4 mm
Tumor grade: low grade
Baseline CEA value (4.46) 5/2016
CEA 6/2/2016 4.8
Lynch- Negative.
LAR 7/13/2016 in Seatle, Wa
Home 7/18/2016. SCCA did a good job managing the pain. Waiting lab resulsts

aja1121
Posts: 214
Joined: Sat Jun 28, 2014 5:12 pm

Re: Almost afraid to say it but NED for 5 months now?

Postby aja1121 » Fri May 13, 2016 1:23 pm

Thank you for posting this. Sometimes I feel so hopeless. It's always encouraging to see stories like yours.
05/23/14 DH dx Stage 3B rectal ca (age 41)
6/2014 chemorad | 10/2014 LAR, all nodes clean
FOLFOX x 10 | VATS/lung met | ileo reversal
09/15 local recurrence
10/15 colostomy
11/15 FOLFIRI x 4, major growth
02/16 tumor debulked
Stable ten months on Xeloda/Avastin
Growth on clinical trials NCT02024607 (BBI608 + FOLFIRI), NCT02817633 (anti-PD-1 + anti-TIM-3), NCT03175224 (c-Met inhibitor)
09/27/2018 started hospice
02/07/19 died

jens22
Posts: 1011
Joined: Wed Jun 09, 2010 9:26 am
Facebook Username: jspirio
Location: Long Island, NY

Re: Almost afraid to say it but NED for 5 months now?

Postby jens22 » Sun May 15, 2016 7:29 pm

Cancer gave me both good and bad things ...One the best was meeting and befriending you. Your strength to trust a total stranger in letting me spring you out of Sloane one day...was so touching and really taught me never to be afriad to step up and hepl someone. My dear friend this is the best news ever!!
Colonoscopy 3/10 for ? hemmorrhoid.
Diag Colon Cancer 3 days later
Colon Ressection 3/30/10
Stage 3B 5/14 Nodes positive.
Power Port and 7 months of Chemo
Port removed 11/11
8 negative Cat Scans..... 7 years cancer free and Discharged from Sloane Kett!!
Diag age 47 , now 54 Mom of 3 boys.

Lee
Posts: 6034
Joined: Sun Apr 16, 2006 4:09 pm

Re: Almost afraid to say it but NED for 5 months now?

Postby Lee » Sun May 15, 2016 7:49 pm

That is so totally AWESOME :D . May you ALWAYS reside in NEDville.

Keep it up and congrads. I remember when you were on the beginning of this journey. I'm so totally happy with your success.

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!

anitaw
Posts: 35
Joined: Wed Jan 16, 2013 9:06 pm

Re: Almost afraid to say it but NED for 5 months now?

Postby anitaw » Sun May 15, 2016 11:29 pm

Cynthia,
Tears of joy as I read your post! You know that you have been one of my inspirations through out my journey. I think of you often. I'm so happy to read this! Continued good health to you.

Anita
DX 2/12 Stage IV CC, mets to liver
3/12 - 12/12 Folfox + Avastin
2/13 - 5/13 Folfuri + Vectibix
HAI Pump - 6/13
2 stg liver res - 11/13 & 4/14
Clear scans: 5/14, 8/14, 9/14
1/15 new met in liver, ablated 6/15
11/15 - new met in liver, surgery 1/16, start Folfuri again
2/16 Scan: NED! Every day is a gift. 6/16 new mets, 2 lymph nodes
3/18 Lymph nodes resection, NED, Folfox again

Talib
Posts: 20
Joined: Tue Dec 08, 2015 2:57 pm
Facebook Username: Tali Bellish
Location: Israel

Re: Almost afraid to say it but NED for 5 months now?

Postby Talib » Mon May 16, 2016 2:44 am

WOW this is so great, thank you for writing this. It is great to read posts like this.
colon cancer - June 2015
45 yrs old at diagnosis
stage III B- 2/32 lymph nodes positive
surgery - July 2015
chemo - FOLFOX August 15 - Feb 16
Feb 16 Pet CT - NED
Sep 16 CT - NED
Jan 17- CT - NED
May 17 liver ultrasound - clear
Nov 17 CT - NED

CFrancis73
Posts: 24
Joined: Tue May 17, 2016 2:01 pm

Re: Almost afraid to say it but NED for 5 months now?

Postby CFrancis73 » Wed May 18, 2016 7:13 pm

Awesome NEWS! Celebrate it girl! Here is to hoping you stay NED FOREVER!
Daughter to a 56 yr old Mother
Stage IV signet ring cell rectal cancer
Poorly differentiated
at this time not a candidate for surgery or HIPEC
mets to peritoneum
no CEA numbers ever run on her
KRAS wild type
11/2015 Modified FOLFOX 6
5/2016 completed 12 rounds of FOLFOX 6
CT scan after 4th round, improvement
PET scan 5/2016 showed non activity in all cancer areas but two nodules (1/lung)
but oncologist believe its chemo induced, not concerned at this time
Laparoscopy scheduled 6/28/16

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Annemiek
Posts: 304
Joined: Tue Apr 07, 2015 4:05 am
Location: The Hague, Netherlands

Re: Almost afraid to say it but NED for 5 months now?

Postby Annemiek » Sun May 22, 2016 10:35 am

Cool!!
These type of stories give so much hope for others!
Have a great summer and continue to be NED!

Annemiek

43 yr mum of a girl aged 7
10/2014 coloncancer stage IIIc
11/2014 HIPEC, tumor removed + 12 positive out of 60 ln
hysterectomy, abdominal lining partly removed
Peridonitus, stoma fitted, 6 abcesses drained in abdomen
MSS, kras
3/2015 Folfox, someones playing kill Bill inside me
9/2015 finished 12 rounds,
First scan results: NED!!!!!!!!!
4/2016 ct scan: NED!!!
7/2016 ultrasound: NED
10/2016 cr scan: NED
5/2017 ultrasound: NED 2,5 yrs!
CEA 8/2017 1.8 stable.
CT scan 11/2017 NED! 3 yrs
CEA 1.9

NateA
Posts: 115
Joined: Sun Aug 02, 2015 7:41 pm
Facebook Username: Nathan Drew Allen

Re: Almost afraid to say it but NED for 5 months now?

Postby NateA » Sun May 22, 2016 11:21 am

Such an inspiration! Thanks for sharing, and so happy for you!
7/15 dx CC stage 4 with lots of liver mets CEA 208
KRAS Mutant G12V, MSS.
9/23 from folfoxiri to folfox and Xeloda. CEA 25
11/11/15 all liver markers in the zone, CEA 4.0, moving to Avastin/xeloda for now..tumors shrinking
01/13/16 Avastin/xeloda CEA 3.5
03/11/16 clean PET CEA 4.4

Nichoebe
Posts: 46
Joined: Fri Dec 18, 2015 7:18 pm
Facebook Username: Michael.Rosenbach

Re: Almost afraid to say it but NED for 5 months now?

Postby Nichoebe » Sun May 22, 2016 4:08 pm

That's such great news I'm so happy for you and ecspecially your little may you continue to get better and stronger by the minute
Congrats
Diagnosed colorectal cancer 9/27/13 3B

Chemo/radiation 28days Xeloda Oxaliplatin
Surgery 2/5/14 0/27 nodes upgraded 3A
Negative Lynch
3/28/14 Chemo 5FU Oxaliplatin 6month
9/27/14 ileostomy reversal
Mid October 2014 wound infected
Mid November 2014 Blood Clot Lovenox 6 months
Colonoscopy 2014

December 2015 Colonoscopy
I Can't Believe It's Back
1/22/16 Salvage surgery
Permanent Colostomy
1 week from surgery in hospital insane pain
60 treatments hyperbaric oxygen therapy
6 months Xeloda 5000 mg/day

Nichoebe
Posts: 46
Joined: Fri Dec 18, 2015 7:18 pm
Facebook Username: Michael.Rosenbach

Re: Almost afraid to say it but NED for 5 months now?

Postby Nichoebe » Sun May 22, 2016 4:09 pm

Supposed to say your little ones
Diagnosed colorectal cancer 9/27/13 3B

Chemo/radiation 28days Xeloda Oxaliplatin
Surgery 2/5/14 0/27 nodes upgraded 3A
Negative Lynch
3/28/14 Chemo 5FU Oxaliplatin 6month
9/27/14 ileostomy reversal
Mid October 2014 wound infected
Mid November 2014 Blood Clot Lovenox 6 months
Colonoscopy 2014

December 2015 Colonoscopy
I Can't Believe It's Back
1/22/16 Salvage surgery
Permanent Colostomy
1 week from surgery in hospital insane pain
60 treatments hyperbaric oxygen therapy
6 months Xeloda 5000 mg/day

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elise
Posts: 1519
Joined: Fri Apr 27, 2012 5:09 pm
Location: Ontario (Canada)

Re: Almost afraid to say it but NED for 5 months now?

Postby elise » Mon May 23, 2016 9:07 am

I just plain LOVE this. LOVE LOVE LOVE!

Elise
2012
Feb - Stage 2 (T3 N0 M0) CC @ 30
Mar - R hemicolectomy, 18 LN
May-Nov 6 - Chemo (8 Xeloda)
2013
Feb - NED
2014
Feb - NED
May - Stage 4 - 1 liver met @ 32
Jun - Liver resection
Oct - CLEAN SCAN
Aug-Jan - FOLFOX 5 rounds, 5FU X 6
2015
Ap, Oct - NED
2016
Mar - NED


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