For Stage III's: NED for how long now?

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

Re: For Stage III's: NED for how long now?

Postby Lee » Sat Oct 12, 2019 6:40 pm

margiej wrote:I have had a rocky week... Had my CT scan last Thursday at an outside radiology clinic and met with my oncologist on Tuesday. He told me my CT looked good but later called and said he was looking at a scan in the system from TWO years ago. He was an oncologist from Mayo filling in at my clinic and I know he felt bad. There is always a problem getting the outside CT connected up with my clinic. After daily contact with the radiology clinic and my own clinic, I finally got the report.. NED. So I am a stage IIIb almost 4 years out. Celebrating with some wine and chili tonight. Hugs to all. Keep hanging in.
Love,
Margie


I can only imagine what your week was like. So very HAPPY to hear you are NED. May you ALWAYS reside in NEDville. Enjoy that wine.

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!

stpio
Posts: 258
Joined: Mon May 26, 2008 6:14 am

Re: For Stage III's: NED for how long now?

Postby stpio » Tue Oct 15, 2019 1:21 am

Good morning to all! I wanted to encourage any newly diagnosed to remain positive and sending prayers! I am 12 year, stage 3 colon cancer survivor and 9 year, stage 1 breast cancer survivor. Hugs and best wishes to all for sharing your inspiring stories! hugs
Female
Surgery July 17, 2007 Stage III
1 foot of colon removed near spleen
1/21 positive LN
5FU/Leucovorin/Oxilaplatin for 6 months
Completed chemo January 2008
Stage 1 Breast Cancer 2010/radiation Tamoxifen

Cured
Posts: 553
Joined: Thu Nov 27, 2008 10:53 pm
Location: MO

Re: For Stage III's: NED for how long now?

Postby Cured » Tue Oct 15, 2019 12:23 pm

So glad you keep this optimistic thread going.

I was cured for 10 years before my Rectal cancer was found to have metastasized. I am still optimistic and feel well. I turn 67 next month, and hope to see my grandchildren grow up. The chemo was tolerable. Tumors in my lungs are reduced. I have been done with chemo for over 6 months and the will do a CT of my lungs in December.
We only discovered the return of the cancer when I was walking funny. My wife drove me to the ER thinking I had a stroke. After the CT they said “no stroke, you just have a tumor on your brain- we want to remove it- SIGN HERE”. If left in place it would crowd my brain &.... Fortunately it was not “urgent/emergent” so we had time to find the best Neurological group and change hospitals. Brain surgery was easy. I was up walking shortly after surgery, then home 2 days later. It they felt that the tumors were from my lung and had pumped up to my head. The radiologist who viewed the CT said it could be a new primary cancer of the lung. Then began the task of identifying the type of cancer in my brain and lungs. You all know that treatment is different for the different kinds of cancer. I had to push-back against my Onc to hold-off on Chemo until we were sure. Repeated lab analyses proved that it was metastatic Rectal. (I was officially a butt-head)

I am truly blessed that the metastasis skipped my liver, and that the lung thingys have responded to the Folfiri Chemo. And for many prayers and God’s mercy.

May you all lead comfortable lives for years to come.
5-08:Stg 3 Rectal: 6/14 Nodes
Ace Surgn Remvd 90%Rectm,lots of Colon-Full Incision
Ileo Rev'd 6 Mos.
Radiatn+5fu Pre-Surgery
FOLFOX 8 CyclDone 1-09
Clear Scope 8-17; CEA 2-18
Glory to God! Healed by prayers of many: for 10 yrs
7-18: tumor pressing against brain Removed
Metastatic to lung. CEA 6.9
Folfiri
CEA to 4.5 after 1 chemo
After 8rds CEA 3
CEA 1.8, 2.3,1.7,2.2,5.7,5.3
12 rds Folfiri
Avastin evy 3 wks
Seizure Anti-seiz meds work-no driving for 6 mo
4-20PET: Lung spots=Chemo

Claudine
Posts: 346
Joined: Tue Mar 12, 2019 2:41 pm
Location: Montana

Re: For Stage III's: NED for how long now?

Postby Claudine » Tue Oct 15, 2019 2:13 pm

Thank you so much for your testimony, Cured. Hopefully you can be true to your name and beat this thing one more time! As you can see from my signature, my husband is also dealing with lung mets; it's great to hear from another person for whom Folfiri did the trick for those! I assume you're on Avastin maintenance? I'm wondering if this is what is in store for my husband (once the adrenal met issue is resolved... Hopefully it will be).
Wife of Dx 04/18 (51 yo). MSS, KRAS G12A
No primary (involuted?)
Lytic tumor L4 vertebrae, EBRT radiation 04/18, SBRT 02/19
Resection small intestine 05/18 (no cancer found - Crohn's)
Failed adjuvant Xelox
Folfiri + Avastin 03/19 to 01/20
6.7 cm left adrenal mass 03/19, successful resection 02/20
CEA since 03/19: high 58, low 3.2, now 7.6
Scan 03/19: Multiple small lung nodules up to 5mm
Scan 12/19: one 1mm stable nodule
PET 04/20 small uptake by L4
L3-L4-L5 fusion surgery and residual tumor removal 05/20

User avatar
horizon
Posts: 1535
Joined: Tue Apr 12, 2011 10:10 pm

Re: For Stage III's: NED for how long now?

Postby horizon » Wed Nov 06, 2019 9:01 am

disco nap wrote:I remember you too, Horizon, and I was glad to see you are also doing well! We should make a pact to celebrate the 10 year mark :)


I'm in. We got this!
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?

zx10guy
Posts: 228
Joined: Mon Jan 07, 2013 12:54 pm

Re: For Stage III's: NED for how long now?

Postby zx10guy » Thu Nov 07, 2019 1:45 am

Despite the craziness with my CEA numbers for the past almost 3 years (I created a recent thread about this), with the recent scans I had which were CT, MRI, and PET/CT showing all clear, I'll be 7 years NED from stage3b colon cancer of my decending colon next month. Although I had a new primary in 2016 which was stage 0 appendicial cancer of which I'm just over 3 years NED from that one.

Cured
Posts: 553
Joined: Thu Nov 27, 2008 10:53 pm
Location: MO

Re: For Stage III's: NED for how long now?

Postby Cured » Sun Nov 10, 2019 6:20 pm

To Claudine,
“As you can see from my signature, my husband is also dealing with lung mets; it's great to hear from another person for whom Folfiri did the trick for those! I assume you're on Avastin maintenance?”

After the Folfiri they had me do 4 doses of Avastin. This was to help both the colon cancer and to help the necrosis in the brain. It probably worked on the brain as the MRIs showed it cleared-up. But our bodies have microfages which naturally cleanup damaged tissue. So we assume that the infused drug helped. My Onc said that they don’t know how Avastin works (and that it is not considered chemo). If it were up to him alone I would have kept on chemo or returned to chemo soon, probably adding Avastin to 5FU. I prefer to allow my body to recover from all of the treatments and to see if it can heal naturally.

I do what I can by prayer and fasting. I continue to drink green tea and some turmeric. I keep in Ketosis with the hope to starve the cancer.
Still, I follow up with the doctors and get a CT scan and blood work on Wednesday.
5-08:Stg 3 Rectal: 6/14 Nodes
Ace Surgn Remvd 90%Rectm,lots of Colon-Full Incision
Ileo Rev'd 6 Mos.
Radiatn+5fu Pre-Surgery
FOLFOX 8 CyclDone 1-09
Clear Scope 8-17; CEA 2-18
Glory to God! Healed by prayers of many: for 10 yrs
7-18: tumor pressing against brain Removed
Metastatic to lung. CEA 6.9
Folfiri
CEA to 4.5 after 1 chemo
After 8rds CEA 3
CEA 1.8, 2.3,1.7,2.2,5.7,5.3
12 rds Folfiri
Avastin evy 3 wks
Seizure Anti-seiz meds work-no driving for 6 mo
4-20PET: Lung spots=Chemo

Claudine
Posts: 346
Joined: Tue Mar 12, 2019 2:41 pm
Location: Montana

Re: For Stage III's: NED for how long now?

Postby Claudine » Mon Nov 11, 2019 12:37 pm

Thanks Cured! DH is getting his 16th infusion right now... Two more to go, then we'll see what happens.
Wife of Dx 04/18 (51 yo). MSS, KRAS G12A
No primary (involuted?)
Lytic tumor L4 vertebrae, EBRT radiation 04/18, SBRT 02/19
Resection small intestine 05/18 (no cancer found - Crohn's)
Failed adjuvant Xelox
Folfiri + Avastin 03/19 to 01/20
6.7 cm left adrenal mass 03/19, successful resection 02/20
CEA since 03/19: high 58, low 3.2, now 7.6
Scan 03/19: Multiple small lung nodules up to 5mm
Scan 12/19: one 1mm stable nodule
PET 04/20 small uptake by L4
L3-L4-L5 fusion surgery and residual tumor removal 05/20

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

Re: For Stage III's: NED for how long now?

Postby Annemiek » Thu Nov 14, 2019 12:46 pm

5 year scan clear!!!! * happy dance * * happy dance*
I owe the colonclub so much, this forum helped me through!!!

From 30% 5 years survival rate to just like anyone else, chances to be hit by a car are higher than cancer mets.

I have been officially released. For bonus miles I asked to have one more ct scan next year just in case. That’ll bring my no of ct scans to 20, nice even number! :lol:

For all those in the trenches. It’s not a fight you can win. But fight you must!!!

Love and hugs,
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

Claudine
Posts: 346
Joined: Tue Mar 12, 2019 2:41 pm
Location: Montana

Re: For Stage III's: NED for how long now?

Postby Claudine » Thu Nov 14, 2019 1:19 pm

This is wonderful, Anne! I also really like seeing in your signature that you're KRAS mutated. So even KRAS folks can beat this :) :) :)
Wife of Dx 04/18 (51 yo). MSS, KRAS G12A
No primary (involuted?)
Lytic tumor L4 vertebrae, EBRT radiation 04/18, SBRT 02/19
Resection small intestine 05/18 (no cancer found - Crohn's)
Failed adjuvant Xelox
Folfiri + Avastin 03/19 to 01/20
6.7 cm left adrenal mass 03/19, successful resection 02/20
CEA since 03/19: high 58, low 3.2, now 7.6
Scan 03/19: Multiple small lung nodules up to 5mm
Scan 12/19: one 1mm stable nodule
PET 04/20 small uptake by L4
L3-L4-L5 fusion surgery and residual tumor removal 05/20

User avatar
mmblz
Posts: 54
Joined: Sat Oct 10, 2015 3:03 pm

Re: For Stage III's: NED for how long now?

Postby mmblz » Mon Mar 16, 2020 10:52 pm

4 years since finishing chemo (next week)!
40yo married 16 years. 4 kids 12, 10, 7, 5
2015-09-21 colonoscopy finds tumor in sigmoid, partial obstruction
2015-09-22 CT no mets, path G2 adenocarcinoma, CEA 1.2
2015-09-29 lap hemicolectomy at MSKCC
2015-10-06 pT3 N1a M0 stage IIIB
2015-10-22 folfox started - 12 rounds, last 4 no oxaliplatin
2016-10-27 clear CT !

AussieAssCancer
Posts: 258
Joined: Sat May 21, 2016 10:16 am

Re: For Stage III's: NED for how long now?

Postby AussieAssCancer » Tue Mar 17, 2020 5:33 am

4 years tomorrow (18 March) as per my surgery date which revealed a complete pathological response!
Dx Oct '15 w/ Stage 3c RC/ CEA 8
Nov '15 - Jan '16: 3x FOLFOX and 5wks Chemoradiation w/ Xeloda
March '16: ULAR w/ temp ileostomy
Complete pathological response incl 0/12 nodes
May - Aug '16: 9x FOLFOX (dropped Oxaliplatin for final Rd due to neuropathy)
Clear CT scans in April ‘16 (NED), Dec ‘16, Aug ‘17, Feb ‘18, March ‘19, Feb ‘20
Feb '17: Ileostomy reversed
CEA Post Surgery: ALWAYS 2

Blog: kickingrectalcancerintheassblog
https://kickingrectalcancerintheassblog.wordpress.com/

NHMike
Posts: 2422
Joined: Fri Jul 21, 2017 3:43 am

Re: For Stage III's: NED for how long now?

Postby NHMike » Mon Mar 23, 2020 4:04 pm

Always good to see success stories. I'm sure you're looking forward to #5 and making the books.
6/17: ER rectal bleeding; Colonoscopy
7/17: 3B rectal. T3N1bM0. 5.2 4.5 4.3 cm. Lymphs: 6 x 4 mm, 8 x 6, 5 x 5
7/17-9/17: Xeloda radiation
7/5: CEA 2.7; 8/16: 1.9; 11/30: 0.6; 12/20 1.4; 1/10 1.8; 1/31 2.2; 2/28 2.6; 4/10 2.8; 5/1 2.8; 5/29 3.2; 7/13 4.5; 8/9 2.8, 2/12 1.2
MSS, KRAS G12D
10/17: 2.7 2.2 1.6 cm (-90%). Lymphs: 3 x 3 mm (-62.5%), 4 x 3 (-75%), 5 x 3 (-40%). 5.1 CM from AV
10/17: LAR, Temp Ileostomy, Path Complete Response
CapeOx (8) 12/17-6/18
7/18: Reversal, Port Removal
2/19: Clean CT

lpas
Posts: 1010
Joined: Wed Nov 19, 2014 11:11 pm

Re: For Stage III's: NED for how long now?

Postby lpas » Tue Mar 31, 2020 6:50 pm

Five years, three months today. :D

Best wishes to all!!
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 & celecoxib
2/19 clean scope
11/19 clean CT
Ongoing cimetidine & other targeted supplements
Mom to a 6 & 8yo

Cj51
Posts: 893
Joined: Thu May 13, 2010 5:58 pm
Location: Midwest

Re: For Stage III's: NED for how long now?

Postby Cj51 » Tue Apr 14, 2020 10:40 pm

10 years as of tomorrow. :-)
DX Stage IIIb RC, T3N1M0, April 2010, 51
6 wks Xelox/rad 6/10
resection, temp illeostomy 8/10 Complete response!
12 rounds FOLFOX for clean up 9/10, Allergic to Oxi, started Xeloda only 12/10
Ileo takedown 9/28/11
4/2020 NED


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