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

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debzak
Posts: 424
Joined: Tue Oct 02, 2012 2:58 pm

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

Postby debzak » Tue Apr 09, 2013 6:49 pm

I am a newbie compared to the rest of you! I had a LAR on 11/5/12, I am 5 months NED. I will have a CT in October if nothing crazy happens between now and then :)

Debbi
2/27/12 dx rectal cancer (stage III)
3/6/12 44th B-day
3/19/12 Oxi & 5-FU (8 rounds)
7/9/12 chemo-rad
11/5/12 LAR surgery temp ileo
1/20/13 4 rounds Xeloda
5/13 multiple liver mets
6/4/13 HAI pump at Sloan
KRAS wild & BRAF mutation found :(

Liz =)

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

Postby Liz =) » Thu Apr 11, 2013 12:28 am

Well maybe you can help me figure this out? When is your Ned day exactly?
I was diagnosed in Nov 2011, surgery Christmas 2011. Chemo Feb thru August 2012. And now there are annual scans, yet another colonoscopy and quarterly bloodwork. (My last colonoscopy a few weeks ago showed a tiny non-cancerous polyp so they want another in 2 years.)

Life goes on and I'm NED but I don't always feel Ned if that makes sense. I'm walking like crazy and gonna do my first 5K Sunday but struggle with neuropathy and arthritis-like symptoms with swelling in my ankles and knee stiffness. Still I plug along. I love walking and would love to run but am taking it slowly and when soreness or swelling happens I take it down a notch until it goes away. I think I lost a lot of strength and coordination during those chemo couch potato months and I know walking has helped with energy levels and coordination, still would love to not feel so old at 52 years...

Kekeg
Posts: 184
Joined: Mon Oct 01, 2012 12:31 am
Location: Arkansas

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

Postby Kekeg » Fri Apr 12, 2013 11:07 pm

Liz

If NED is measured since initial diagnosis, 23 months for me. I understand not feeling NED, keep waiting to feel like my pre-cancer self... although much better than during my 8+ months of chemo, fatigue is still an issue along with concentration and complex task issues and can't shake the feeling that something is wrong. I should be grateful, but that is not how I feel. My primary care physician and I discussed 5FU side effects vs. depression and as he said, we can't take the chemo back. I started on antidepressants in the fall and began seeing a therapist in February. I so focused on making it through surgery and chemo and working that did not take time to absorb how my life changed. I wish you the best and will post later about how the therapy helps or not.
KeKeG age 58
Colon cancer - adneocarcinoma dx 5/2011
Stage III b
T3N1Mx
Rt colectomy 5/2011
Chemotherapy 6/2011 -2/2012
5FU, leukovorin, irrintocan
PET clear 2012
Lung nodules on chest CT 8/2012, unchanged 12/2012
CT 4/9/2013 NED, nodules unchanged
CT 4/2014 NED, nodules unchanged
CT 4/2015 NED nodules both lungs, unchanged size
CT 5/2016 NED 5 year survivor of Stage IIIB!!

JackAZ
Posts: 20
Joined: Mon Jan 02, 2012 5:09 pm

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

Postby JackAZ » Sat Apr 13, 2013 11:43 pm

I just had my second CLEAR PET scan last week 15 months after surgery. I feel fortunate to have relatively minor side effects from the chemo, oxi, and radiation. I have mild neuropathy in my finger tips and feet but it does not restrict any activities. The only dietary change is I avoid chili with meat and beans. I should also add that my CEA level is at it's lowest since surgery at 1.1.

I don't log-in ofter since my treatment was completed, but like this original post, I find it important to update my status with the "knock on wood" good news of my progress.
Dx 12/21/11
1/12 - LAR - 9/18 nodes affected
Dx T3N2bM0 - Stage 3C - Clean CAT with CEA = 1.3
2/12 - RX Radiation with Xeloda for 5 weeks
4/12 - FLOX treatment for 8 bi-weekly sessions
8/12 - Completed FLOX treatment
9/12, 4/13 - Clear PET scan - NED
3/2016 - Colonoscopy - NED

Ontario Guy
Posts: 278
Joined: Fri Aug 03, 2012 7:55 am

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

Postby Ontario Guy » Sun Apr 14, 2013 9:20 am

Liz =) wrote:I'm walking like crazy and gonna do my first 5K Sunday but struggle with neuropathy and arthritis-like symptoms with swelling in my ankles and knee stiffness. Still I plug along. I love walking and would love to run but am taking it slowly and when soreness or swelling happens I take it down a notch until it goes away. I think I lost a lot of strength and coordination during those chemo couch potato months and I know walking has helped with energy levels and coordination, still would love to not feel so old at 52 years...


Liz, I hear you, loud and clear. I was expecting neuropathy - my team told me repeatedly that it might not clear up for a long time - but I wasn't expecting arthritis-like ankles and other things. I know I should just feel grateful to be alive - and I am! - but I do feel a lot older than I did before treatment.

I saw a therapist for several months. He was a big help, if only to have me understand and accept that things are different, that my life won't go back to the way it was before. Not necessarily better or worse, just different.

Good luck with the 5K.

OG

Peabody5422
Posts: 334
Joined: Fri Dec 09, 2011 10:21 am
Facebook Username: debbie.whitaker

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

Postby Peabody5422 » Thu Apr 25, 2013 12:57 pm

I was DX 11/22/11 with T1 1nc MX Stage III rectal/colon cancer. Surgery 12/11, Chemo (Xeloda) and rad for 3 1/2 months. Final dose was 3/22/12. Onoc dr said cancer free on Monday of this week. continuing 3 months checkup with colon/rectal surgeon and 6 months with onoc dr for at least the next 3 yrs. Was given 60% when 1st DX'd. blessed. Could have been so much worse. Keeping fingers crossed that it never returns or spreads. Good luck to others. Should have had the test earlier. Do not know what I was thinking. Had breast exams, momograms, paps and etc tests :D but not colonoscopy as recommended. Could kick myself and others. It was preventable! :D
DX: RC 11/11 T1 N1c MX
Surgery: LAR 12/23/11
Rad & Xeloda: 1/12 - 4/12
Clean CT: 4/12
Reoccur: Lymp 4/14 4 new locations. 2 Aortic, 2 locations Rectum
Chemo to start: 6/14, OXI, Advastin, 5FU
10/14: One tumor left - on Avastin only
Surgeries: 4/15, 7/15 and 8/15 :last tumor w/Illeostomy then Ostomy
NED by 7/15 Surgery

Dori
Posts: 426
Joined: Mon Jun 23, 2008 10:29 pm

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

Postby Dori » Thu Apr 25, 2013 3:29 pm

Currently waiting for results of my five year scan. That's five years since diagnosis and surgery, not since finishing chemo. If this scan is clear, my oncologist plans to cut me loose and have my general practitioner take care of me. I'm a little nervous, but I don't know how much of my nervousness is over the scan and how much is over being potentially cut loose. There is a certain security that comes with having scans.

Best wishes to everybody.
Dori
47 years old
Stage IIIC, high grade signet ring, 14 out of 18 nodes affected
Colon resection 5/15/08
FOLFOX 6/08 - 11/08
Mom to a great 11 (!!) yo girl
Currently NED

nbrandt
Posts: 474
Joined: Sun May 01, 2011 7:42 pm
Facebook Username: craig.brandt

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

Postby nbrandt » Sat Apr 27, 2013 7:51 pm

Dori,
Prayers for the final hurdle. Prayers for good 5 year scan results. We will celebrate with you.
NBrandt
DXCCT3N2aMx 5/20LN
Folfox10/10-4/11
Scan 10-13-10,4-4-11,7-4-11,9-22-11,4-9-12,9-24-12,10-1-13,4-9-14,9-17-14,9-10-15,9-15-17NED,
CEA 1. Pre .6 7-4-11 .7 9-22-11 .6
1-13-12 .9 4-9-12 .7 9-24-12 .6 1-4-13 .8 10-1-13 .8 4-9-14 .7 9-17-15.8
Courage, Hope, Health

crockpotgirl
Posts: 96
Joined: Thu Nov 11, 2010 8:29 pm
Location: Florida

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

Postby crockpotgirl » Tue Apr 30, 2013 10:05 pm

Thank you Jesus! I am grateful and relieved that my third annual CT scan today was clear! I am at about the 3.5 year point from diagnosis.

My oncologist always refers to me as stage III (which makes me twitch a little because by all my testing, I am technically a stage IIa.) He contends that just because none of the nodes were enlarged at my initial staging, we'll never know whether they were cancerous prior to the radiation. My tumor was large (60% around the lumen, and went through the muscularis propria in multiple areas.)
T3N0M0 rectal IIa 11/6/09 age 43
5FU and radiation
LAR, BSO, j-pouch, ileostomy 2/12/10 at MD Anderson 0/21 nodes
Folfox4 3/10
Ileostomy takedown 7/21/10
Neuropathy 8/10
Port out 10/29/10
Married, 4 young boys, lots of pets
Thankful to be alive!

lydia123
Posts: 771
Joined: Sun Jul 04, 2010 11:23 am

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

Postby lydia123 » Wed May 01, 2013 12:02 pm

"don't come back until April 2014"

2 years 11 months since diagnosis.

good luck to all.

L
lydia123
caregiver to husband dx stage III colon/rectal cancer 5/10
6/10 surgery
7/10: FOLFOX began -- became nausea management expert
12/10: Chemo-radiation ended, scans clean.
NED since, but some scans required follow-up

ganda
Posts: 16
Joined: Wed Oct 27, 2010 12:30 pm
Facebook Username: Andrea Steiner Catena
Location: Houston, TX

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

Postby ganda » Mon May 06, 2013 1:38 pm

This thread kept my hope alive during my down times and I always hoped to be able to post encouraging news when I got to my 3 year post surgery scan. So- feeling extremely blessed I just got news that there is No Evidence of Disease on my latest PET scan.
It has been 3 years since my emergency surgery.
I have always been a reader on this site and so many people's posts have helped me during this journey.
Thanks to you all and wish you all the best
Andrea
39 years old
4/2010 Stage 3C Colon Cancer 11/40 lymph nodes ; emergency surgery
5/2010 - Pet Scan- clear
5/2010- start Folfox
11/10- chemo complete
12/10- reversal
Scans 1/11,5/11, 9/11,1/12,4/12, 11/12- NED- knock on wood.
Mommy to Maddie,4 years old

edsandra
Posts: 13
Joined: Wed Nov 25, 2009 4:04 pm
Location: Central Texas

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

Postby edsandra » Thu May 16, 2013 5:16 pm

NED for five years :D
Ed
70
DX rectal 4/1/08
28 Rad 5FU 24/7
Surgery 1 of 16 nodes 8/6/08
Stage III T2,N1,M0
FolFox 3 Treat 10/8/09
Flox 12 Treat 2/4/09
Stopped Eloxatin 12/31/08 feet tingle
Ileo rev 2/19/09 blockage 4/7/09
60 Hyperbaric Oxygen 8/14/09 rad damage
NED Jan 2012

kiwiinoz
Posts: 1155
Joined: Thu Jan 03, 2013 11:44 pm

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

Postby kiwiinoz » Thu May 16, 2013 6:15 pm

Congratulations Ed,
Well done
Kiwi
Stage IV Rectal Cancer (39 Year old male at dx)
pT3N0M1 (wish that was M0)
Diagnosed 05 Dec 2012
LAR 05 Jan 2013
VATS 27 Feb 2013
FOLOFX April 2013 - Sep 2013
Clear Scan 03 Dec 2013 - 22 May 2019
Port Out 26 March 2015

jens22
Posts: 1012
Joined: Wed Jun 09, 2010 9:26 am
Facebook Username: jspirio
Location: Long Island, NY

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

Postby jens22 » Fri May 17, 2013 7:38 am

3 years and 2 months...going strong and enjoying everyday!!!
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..... 10 years cancer free and Discharged from Sloane Kett!!
Diag age 47 , now 57 Mom of 3 boys.

User avatar
very worried husband
Posts: 130
Joined: Mon Mar 28, 2011 1:20 am

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

Postby very worried husband » Fri May 31, 2013 1:54 pm

Just got back from our ONC. my wife's had Blood work two weeks ago. Everything normal with CEA @ 1.3. :mrgreen:

Yearly Scan and consolatory in Sept.

Best of luck to all.
Caregiver to Wife age25
Diagnosed Colon IIIB Jan2011
7/29 Nodes +
5FU+Oxi in china. Feb-Aug 2011
CEA@Diagnose:0.79
Immunological chemistry: Ki-67 (+), MSH2(+), MLH1(++), ERCC1 (-)
NED Supplements: Aspirin,Vit D,Calcium, Genoderma Lucidium
Baby born June 2015 :D :D :)


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