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

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Oneeyeddog
Posts: 101
Joined: Sat Apr 06, 2013 11:06 am

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

Postby Oneeyeddog » Thu Oct 04, 2018 6:46 am

I was diagnosed stage 3C in March/April 2013. I am still NED. I had a lot of lymph nodes involved (9 out of 22). I read this thread a lot when I was diagnosed to hear stories of hope, so here's mine.
Colon cancer Stage 3c (dx April 2013) at age 36
Resection and temp ileostomy (4/17)
12 rounds of FOLFOX (May-Oct 2013)
NED (August 2014)
http://www.theoneeyeddog.com

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mmblz
Posts: 53
Joined: Sat Oct 10, 2015 3:03 pm

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

Postby mmblz » Sun Oct 07, 2018 9:06 pm

Three years!
38yo married 14 years. 4 kids 10, 8, 5, 3
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 !

ccpt1958
Posts: 8
Joined: Mon Dec 31, 2012 11:35 am

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

Postby ccpt1958 » Mon Oct 08, 2018 6:51 pm

I was diagnosed 4/12 and am still NED
diagnosed stage IIIA 4/2012
sigmoid resection 4/2012
T2T1MO (only 4 lymph nodes harvested)
completed FOLFOX 11/2012
dropped oxy after the 4th treatment due to worsening neuropathy
clean scan 1/2014
NED

User avatar
Maggie Nell
Posts: 1064
Joined: Wed May 27, 2015 1:57 am
Location: Melbourne, Australia

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

Postby Maggie Nell » Mon Jan 21, 2019 8:54 am

bumping up for newbies
DX April 2015, @ 54
35mm poorly diff. tumour, incidental finding following emergency r. hemicolectomy
for ileo-colic intussusception.
Lymph nodes: 0/22
T3 N0 MX

Ron50
Posts: 687
Joined: Fri Feb 10, 2006 7:04 pm

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

Postby Ron50 » Mon Jan 21, 2019 3:47 pm

Today ends my 21st year of survival post stage 3c colon cancer, start year 22. Good health to all, Ron.
dx 1/98
st 3 c 6 nodes
48 sessions 5Fu/levamisole
no recurrence cea <.5
numerous l/t side effects of chemo

shinny
Posts: 4
Joined: Mon Sep 04, 2017 3:39 am

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

Postby shinny » Fri Feb 08, 2019 4:59 am

I just wanted to post on here as this forum was invaluable to me when my Mam was diagnosed in April 2017. As most people probably do here, I read everything. Here are her stats:

Dx: 4th May 17
Age diagnosed: 69 (71 now)
Stage: T4/N2/M0 (Stage IIIc) 5/12 nodes positive. Right hemicolectomy surgery 26th May 2017. Lap/Robotic surgery.
Chemo Started 5th July 2017: FOLFOX & Oxaliplatin, 12 rounds (reduced by 20% at round 5)

We just got another clear scan last month and her blood test results are all good. CEA is now 2.4. We never got it before surgery, but it was 7.3 during treatment and then 3.2 just after she finished and then 3.0 and now 2.4. Her liver enzymes went array for a while during treatment but all are normal again except GGT which is now only slightly elevated. C reactive protein is 1.0 (range <5.0). We were also keeping an eye on CA19-9. It was 45 (range 0-37) just after she completed chemo and went down to 26.5 a couple of months after. We've not tracked it since however, I'll ask for it to be tested in her next set of blood taken.

Her vitamin D levels were dreadful at diagnosis so we invested in the Sperti Vitamin D lamp and she also took Thorne Vitamin D and K2 supplement drops each day (around 8-10 drops, we reduced this when we added the lamp in). We got her levels up from a paltry 13ng/ml to 52 ng/ml during treatment. If you have not researched the effects of low vitamin D and cancer, then look at this video: https://youtu.be/v3pK0dccQ38

She was considered NED after the surgery in May 2017 and then chemo was obviously done as a precaution. I'm not sure when most people start the clock as NED. However, our surgeon said it was from surgery. If we take it from the surgery point of view she is 20 months NED. If from point of completing chemo, she is 13 months NED.

Some things we did post-treatment.

CBD / THC blend taken daily. She still takes this.
Infrared Sauna 3/4 times a week at 45c to 50c for 30-40 mins. Sauna is less frequent now.
Quinton Isotonic Mineral supplement daily. She takes this daily and she reckons it made her bounce back much more quickly.

My Mam was extremely healthy otherwise. Ironically she was rarely sick. When we would all be hit by viruses etc, she'd usually be the one who was ok. Her health is fully back to normal now which is great and her energy levels are better than a lot of people half her age!!

AussieAssCancer
Posts: 255
Joined: Sat May 21, 2016 10:16 am

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

Postby AussieAssCancer » Mon Mar 18, 2019 4:40 am

3 years NED today! This time 3 years ago I was on my way to the ward after my ULAR. In a few days I will have been told that I had a complete pathological response.

Posting to let new peeps know that there is light at the end of the tunnel.

AAC
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 '17: Ileostomy reversed
CEA Post Surgery: ALWAYS 2

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

Cmarie03
Posts: 25
Joined: Sat Feb 16, 2019 6:35 pm

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

Postby Cmarie03 » Mon Mar 18, 2019 11:27 am

Omg this gives me hope!!! I was diagnosed stage IIIC rectal cancer on December 20, 2018. I did chemo and begin my radiation today at MD Anderson in Houston. Thank you for bumping this and for encouragement!!!
Diagnosed stage IIIC rectal cancer 12/20/18 in ER
4 rounds FOLFOX January 2019-February 2019
Xeloda/Radiation March 2019-April 2019
4 more rounds FOLFOX 6/5-7/17
Surgery sched 8/20/19

Lee
Posts: 5920
Joined: Sun Apr 16, 2006 4:09 pm

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

Postby Lee » Mon Mar 18, 2019 9:51 pm

Cmarie03 wrote:Omg this gives me hope!!! I was diagnosed stage IIIC rectal cancer on December 20, 2018. I did chemo and begin my radiation today at MD Anderson in Houston. Thank you for bumping this and for encouragement!!!


Know that this cancer is treatable/cureable, I am coming up on 15 yrs survivorship. I will be bumping this thread up in about another 4-6 weeks.

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!

margiej
Posts: 81
Joined: Sat Apr 14, 2018 8:46 am

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

Postby margiej » Mon Mar 18, 2019 10:52 pm

Three years, two months!
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

AussieAssCancer
Posts: 255
Joined: Sat May 21, 2016 10:16 am

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

Postby AussieAssCancer » Tue Mar 19, 2019 5:56 am

Lee wrote:
Cmarie03 wrote:Omg this gives me hope!!! I was diagnosed stage IIIC rectal cancer on December 20, 2018. I did chemo and begin my radiation today at MD Anderson in Houston. Thank you for bumping this and for encouragement!!!


Know that this cancer is treatable/cureable, I am coming up on 15 yrs survivorship. I will be bumping this thread up in about another 4-6 weeks.

Lee


As Lee said - this is more than treatable. You’ve got this!!!

AAC
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 '17: Ileostomy reversed
CEA Post Surgery: ALWAYS 2

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

_Jelen90
Posts: 9
Joined: Sat Jan 19, 2019 7:12 pm

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

Postby _Jelen90 » Wed Mar 20, 2019 12:07 pm

Thank you all for sharing your stories!! It gives so much hope. My husband is done with Chemoradiation tomorrow after 6 long weeks. Surgery will be in about 10 weeks. It warms my heart to read you all :D
21/12/2018 DH 28 diag. Rectal cancer T2N1M0
6 weeks of Chemorad Jan-March 2019
Surgery scheduled June 12

ibcaree
Posts: 37
Joined: Wed Nov 19, 2008 6:12 pm
Location: Oklahoma

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

Postby ibcaree » Wed Apr 10, 2019 12:34 am

I wanted to pop on here and encourage those of you fighting this current battle with colon and rectal cancer that there is hope. I know that not everyone receives their healing from this horrible disease, but I am living proof that it can and does happen. 10 years ago I was given a 50/50 chance of survival. I was 33 with a 2 year old and a 4 year old and trying to conceive a third child. Everything in that moment after diagnosis stopped and beating cancer was the only goal. I had no idea what my future would hold. In December 2018 I celebrated 10 years cancer free with no recurrence. I was very fortunate that chemotherapy did not cause menopause and I was even able to conceive and give birth to a (surprise!) beautiful baby girl 6 years after my chemotherapy.

I know what you are experiencing and dealing with right now is horribly difficult and sometimes hope is hard to hold on to, but healing and restoration is possible. God gets all the glory in my outcome, but He definitely placed me in the hands of an amazing surgeon and a fantastic Oncologist. I want to encourage you that healing is possible and remind you that it can and does happen. This is a fight worth fighting. Keep fighting. Praying for you all and praying for a cure.
Diagnosed with Rectal Sigmoid Colon Cancer at age 33 11/11/08
Colon Resection Surgery 12/15/08
Stage IIIB; 4/18 lymph nodes affected
5FU 1/28/09 (12 treatments over 6 mos)
Mom to two boys age 15 and 12, and a beautiful post cancer baby girl aged 3 years!
Age: 44
NED as of July 09!!
"God can restore what is broken and change it into something amazing. All you need is faith." Joel 2:25

Cmarie03
Posts: 25
Joined: Sat Feb 16, 2019 6:35 pm

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

Postby Cmarie03 » Thu Apr 11, 2019 1:34 pm

ibcaree wrote:I wanted to pop on here and encourage those of you fighting this current battle with colon and rectal cancer that there is hope. I know that not everyone receives their healing from this horrible disease, but I am living proof that it can and does happen. 10 years ago I was given a 50/50 chance of survival. I was 33 with a 2 year old and a 4 year old and trying to conceive a third child. Everything in that moment after diagnosis stopped and beating cancer was the only goal. I had no idea what my future would hold. In December 2018 I celebrated 10 years cancer free with no recurrence. I was very fortunate that chemotherapy did not cause menopause and I was even able to conceive and give birth to a (surprise!) beautiful baby girl 6 years after my chemotherapy.

I know what you are experiencing and dealing with right now is horribly difficult and sometimes hope is hard to hold on to, but healing and restoration is possible. God gets all the glory in my outcome, but He definitely placed me in the hands of an amazing surgeon and a fantastic Oncologist. I want to encourage you that healing is possible and remind you that it can and does happen. This is a fight worth fighting. Keep fighting. Praying for you all and praying for a cure.



Did you do radiation as well? I am 34yo and I’m afraid radiation is going to push me into early menopause. Not happy about it :?
Diagnosed stage IIIC rectal cancer 12/20/18 in ER
4 rounds FOLFOX January 2019-February 2019
Xeloda/Radiation March 2019-April 2019
4 more rounds FOLFOX 6/5-7/17
Surgery sched 8/20/19

ibcaree
Posts: 37
Joined: Wed Nov 19, 2008 6:12 pm
Location: Oklahoma

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

Postby ibcaree » Fri Apr 12, 2019 10:22 am

Cmarie03 wrote:
ibcaree wrote:I wanted to pop on here and encourage those of you fighting this current battle with colon and rectal cancer that there is hope. I know that not everyone receives their healing from this horrible disease, but I am living proof that it can and does happen. 10 years ago I was given a 50/50 chance of survival. I was 33 with a 2 year old and a 4 year old and trying to conceive a third child. Everything in that moment after diagnosis stopped and beating cancer was the only goal. I had no idea what my future would hold. In December 2018 I celebrated 10 years cancer free with no recurrence. I was very fortunate that chemotherapy did not cause menopause and I was even able to conceive and give birth to a (surprise!) beautiful baby girl 6 years after my chemotherapy.

I know what you are experiencing and dealing with right now is horribly difficult and sometimes hope is hard to hold on to, but healing and restoration is possible. God gets all the glory in my outcome, but He definitely placed me in the hands of an amazing surgeon and a fantastic Oncologist. I want to encourage you that healing is possible and remind you that it can and does happen. This is a fight worth fighting. Keep fighting. Praying for you all and praying for a cure.



Did you do radiation as well? I am 34yo and I’m afraid radiation is going to push me into early menopause. Not happy about it :?


My surgeon was adamant that I not receive radiation. He felt the tumor was far up enough in my colon that it wasn't necessary. Even still, I did speak with my Reproendocronologist about possibly freezing my eggs just in case, but we decided to not go through with it. It is an option though and something for you to think about. I don't blame you for feeling the way you do about possible early menopause. Praying it is not the case for you, but just remember, survival is the main goal and if you choose to freeze your eggs, your options are still open in the future after you beat this crap! Praying for a full recovery for you.
Diagnosed with Rectal Sigmoid Colon Cancer at age 33 11/11/08
Colon Resection Surgery 12/15/08
Stage IIIB; 4/18 lymph nodes affected
5FU 1/28/09 (12 treatments over 6 mos)
Mom to two boys age 15 and 12, and a beautiful post cancer baby girl aged 3 years!
Age: 44
NED as of July 09!!
"God can restore what is broken and change it into something amazing. All you need is faith." Joel 2:25


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