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

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WriterGirl1969
Posts: 513
Joined: Sat Mar 05, 2016 3:48 pm
Location: Central NY

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

Postby WriterGirl1969 » Wed Apr 17, 2019 11:09 am

Celebrating my 3-year scan results coming back CLEAN yesterday, so I am now officially 3 years NED. As ibcaree so eloquently said, God gets all the credit. I have been blessed with a wonderful support system (including all of you), an excellent surgeon, and the faith that sustains me daily. The book I wrote about my personal journey, along with the stories some of you allowed me to include, never ceases to amaze me in the way it provides encouragement to others.

I will continue to pray for a cure so we can stop losing precious loved ones to this wretched disease.

Tracy
DX 3/4/2016 Colon Cancer; age 46 Mom of then 4-yr-old
Stage IIIB: T3N1M0
3/31/16 Surgery
4 to 10/2016: Xeloda Monotherapy
CEA: 10/16 0.56, 1/17 0.54
CT CLEAR: 3/6/17; 4/17/18; 4/16/19
NED 3 years
“If I can help somebody as I walk along, then my living shall not be in vain.”

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wwroam
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Facebook Username: Wayne Whitaker
Location: Brisbane, Australia
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Re: For Stage III's: NED for how long now?

Postby wwroam » Mon Jun 24, 2019 6:53 pm

12 years NED from Colon Cancer today.
Unfortunately my NSCLC is looking very shaky. I have a guided biopsy of lung nodules this week. If that proves to be cancerous it will be immunotherapy for me. Most likely Opdivo.
Stage 3a DX 25/06/07
Folfox complete 30/01/08
7 years NED
Port scheduled for removal 8/02/10 Gone.
PSA .54 No prostate problems
Diagnosed Type 2 Diabetic
SO diagnosed CC Stage IV Liver Mets 23/03/15

Ron50
Posts: 695
Joined: Fri Feb 10, 2006 7:04 pm

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

Postby Ron50 » Tue Jun 25, 2019 4:03 pm

Best of luck with the lungs mate, Hoping it is all scar tissue. Ron.
dx 1/98
st 3 c 6 nodes
48 sessions 5Fu/levamisole
no recurrence cea <.5
numerous l/t side effects of chemo

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CRguy
Posts: 10021
Joined: Sun Feb 10, 2008 6:00 pm

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

Postby CRguy » Tue Jun 25, 2019 11:30 pm

wwroam wrote:12 years NED from Colon Cancer today.
Unfortunately my NSCLC is looking very shaky. I have a guided biopsy of lung nodules this week. If that proves to be cancerous it will be immunotherapy for me. Most likely Opdivo.

Sending all the best wishes your way
Keep us in the loop my friend

Cheers and MEGA POSI++++++++ Vibes
CRguy
Caregiver x 4
Stage IV A rectal cancer/lung met
12 Year survivor
my life is an ongoing totally randomized UNcontrolled experiment with N=1 !
Review of my Journey so far

PainInTheAss
Posts: 663
Joined: Tue Jul 02, 2013 3:08 am

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

Postby PainInTheAss » Wed Jun 26, 2019 4:29 am

My birthday was yesterday. Six years ago I met with my oncologist for the first time on my birthday. I’ve been NED for 5 years, and it will be six in October.

I stopped posting, too, but it’s not from survivors guilt. It’s just that life gets busier and busier and busier the more you get back into it. You never completely forget about cancer or your treatment. You have daily or even hourly reminders. I was rubbing lotion on my neuropathy numbed feet and I thought about the colon club today. Colon Club was my lifeline. I really thought I was going to die. I was a IIIc two ways since I had 5 lymph nodes light up and I was also a T4b. There was one lymph node that lit up that was near my spine that could not be removed by surgery. It took two years to get insurance to approve a PET scan to check and see if the chemo and radiation wiped it out. Now I’m going to bed, exhausted from so many activities and knowing tomorrow is busy with even more. I’m strong, full of energy now and feel more like my old self than I have in six years. I walk fast and find it easier to get up out of chairs. The effects of chemo and radiation on the joints really do slowly get better year and year. I feel better this year than I did last year, even. I’ve always so gotten back to being able to function on 7 hours sleep instead of 10. I’ve got my ostomy down now where I can even go without ostomy supplies. My only real problem is gas, so I carry body spray with me everywhere. I remember being terrified hearing I would likely have an colostomy. Now that’s just my life.

But... I always feel like I’m living on borrowed time. I want to do so much while I have the chance. I beat cancer (so far), but there are also heart attacks, strokes, getting hit by a bus, choking on a chicken bone. My only wish is not to die from something really stupid. I went through so much to stay alive, I don’t want to waste it.
47yo single mom of 4 (24, 21, 18, 16) at Dx
6/13 - RC T4b IIIc 5LNs on PET CEA 5.4
8/13 - Finish chemorad
10/13 - APR/hyst+ovaries/perm colostomy 2/12 nodes+
6/14 - Finish Xelox 6 rds
1/15 - CT clear CEA 0.2
10/15 - CT/MRI clear CEA 0.7
4/16 - CT clear
10/16 - CT/MRI clear CEA 0.6
5/17 - PET clear? Follow up MRI to verify inflammation

Basil
Posts: 262
Joined: Thu Mar 16, 2017 12:33 pm

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

Postby Basil » Fri Jun 28, 2019 8:35 pm

Had my two year scans this week - all clear.
40 y/o male, kids 8&11
Dx 3/16/17, rectal cancer s3,t3,n1,m0
PROSPCT trial (FOLFOX in lieu of chemorad)
FOLFOX 4/5/17 - 6/26/17
LAR 7/31/17, temp ileo
pathological complete response
Adjuvant chemo cancelled (IDEA Study)
Ileo reversed 9/25/17
NED
1 year scans - clear
2 year scans - clear

teddydove
Posts: 1
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Facebook Username: teddy.dove

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

Postby teddydove » Tue Jul 16, 2019 3:50 pm

Hi everyone. I do not believe I have posted before, but I lurked here a lot starting five years ago when my wife was diagnosed IIIc with 8 out of 20 nodes and T3. Her cancer was discovered when she had routine colonoscopy at age 50. She only managed six rounds of oxaliplatin because she reacted very badly to it (seizures and a night or two in ICU), but she had the rest of folfox for 12 sessions.

I read this thread this morning to prepare mentally for her five-year followup CT and CEA tests. My wife never believed she had cancer and she was not at all worried. I did the worrying for both of us. The news could not have been better. All clear and she is released from the oncologist. Just regular colonoscopies at five year intervals.

I remember googling death rates for IIIc and being shocked at how bleak her odds looked (from American Cancer site...they have since updated the numbers). Here we are more than five years later and she is doing great. She has a little residual neuropathy that is annoying to her, but not nearly as serious as you hear about.

I loved this thread and hoped that one day I could post good news. Today is that day.

Ron50
Posts: 695
Joined: Fri Feb 10, 2006 7:04 pm

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

Postby Ron50 » Wed Jul 17, 2019 5:43 am

Congratulations to both of you. May you both lead a long and happy life. Ron.
dx 1/98
st 3 c 6 nodes
48 sessions 5Fu/levamisole
no recurrence cea <.5
numerous l/t side effects of chemo

thubler
Posts: 57
Joined: Tue Sep 27, 2016 9:22 am

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

Postby thubler » Tue Sep 10, 2019 10:44 pm

Bump
III b CC @ 35 yoa.
two primary tumors on ascending/transverse stage 1 and stage 3.
Lynch Positive
Resection 05/16
2/41 nodes +
FOLFOX 6/16-11/20/16
Clear Endoscopy and Colonoscopy 12/6/16, 02/13/18,01/24/19
CT 02/07/17 enlarged mesenteric node.
Clear PET 02/15/17
Stable CT 06/05/17,10/16/17,04/02/18, 01/08/19
Deported 11/03/17

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horizon
Posts: 1523
Joined: Tue Apr 12, 2011 10:10 pm

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

Postby horizon » Wed Sep 11, 2019 12:04 am

Only had a blood test this year but CEA was good. That makes it 8 years.

Basil wrote:Had my two year scans this week - all clear.


Late congratulations my dude!
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?

disco nap
Posts: 991
Joined: Sat Aug 07, 2010 10:45 am

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

Postby disco nap » Thu Oct 10, 2019 7:47 pm

Hello!
I'm now 9 years NED. I haven't been on the forum for ages but suddenly felt like checking in. I am glad to see so many familiar "faces" still here and still doing well.

I started a volunteer gig with the Canadian Cancer Society as a peer coach for people who are recently diagnosed with cancer. Right now, I'm partnered up with a young lady in almost exactly the same circumstances as I was 9 years ago, and I'm happy to be able to provide some sort of hope that it's possible to make it through chemo and live a pretty great life afterwards.

Love to you all!
DX July 2 '10 CC Stage IIIC, 11/18 nodes+
Right Hemi July 6 '10
Folfox: Aug 17'10 - Feb 17'11
Mar 2012: Lynch Syndrome MLH1
"Declared well" and been well ever since.
Update: Oct 2019 - still NED.

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horizon
Posts: 1523
Joined: Tue Apr 12, 2011 10:10 pm

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

Postby horizon » Fri Oct 11, 2019 8:21 am

disco nap wrote:Hello!
I'm now 9 years NED. I haven't been on the forum for ages but suddenly felt like checking in. I am glad to see so many familiar "faces" still here and still doing well.


Def remember you. Glad you're doing so well!
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?

disco nap
Posts: 991
Joined: Sat Aug 07, 2010 10:45 am

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

Postby disco nap » Fri Oct 11, 2019 5:30 pm

horizon wrote:
disco nap wrote:Hello!
I'm now 9 years NED. I haven't been on the forum for ages but suddenly felt like checking in. I am glad to see so many familiar "faces" still here and still doing well.


Def remember you. Glad you're doing so well!



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 :)
DX July 2 '10 CC Stage IIIC, 11/18 nodes+
Right Hemi July 6 '10
Folfox: Aug 17'10 - Feb 17'11
Mar 2012: Lynch Syndrome MLH1
"Declared well" and been well ever since.
Update: Oct 2019 - still NED.

margiej
Posts: 88
Joined: Sat Apr 14, 2018 8:46 am

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

Postby margiej » Fri Oct 11, 2019 7:45 pm

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
Dx CC 12/2015, age 57 at Dx
Stage IIIb: T3N1b
Adenocarcinoma, sigmoid colon, 2.5 cm - low grade, moderately differentiated
3/6 positive lymph nodes
laparoscopic colectomy 1/20/2016
Capox started 3/4/16 - Six rounds
CT-suspicious lymph 2/22/16
PET scan 2/24/16 clear
CT 6/8/16 clear
Clear Colonoscopy 3/17
CT 10/3/17 clear
CT 10/17/18 clear
CEA 12/17 1.7
5/16 3.8
7/16 1.9
3/17 1.3
10/17 1.2
4/18 1.6
11/18 1.2

NHMike
Posts: 2324
Joined: Fri Jul 21, 2017 3:43 am

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

Postby NHMike » Fri Oct 11, 2019 8:07 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


Glad you're doing well. I'm another 3B.

Electronic Medical Records are great for hospitals and clinics to share information but it doesn't work for imaging. I get CDs from one hospital and drive it to the other hospital. Hopefully it's fixed someday.
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


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