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

User avatar
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

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Maggie Nell
Posts: 936
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: 680
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: 3
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!!


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