NED's are you following a diet & exercising or living your life as before?

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NED's are you following a diet & exercising or living your life as before?

Postby ieowi » Thu Jul 30, 2015 6:45 am

i am really interested to know if it worth following any cancer diet or just live as before. are NED people all on diet and exercises ?
does it really help following a good diet ? sugar free and all that ????
Father 58 yo , Colon cancer IV + 4 Lymph. 7/2015
K-ras Mutant,GNAS,FBXW7,PIK3CA, MSI-low
4 cycles irinotecan+FU5
developed abdominal met + lung met...Failed
4 cycle Oxaliplatin+folfox. peri met growing...Failed
unofficial trial !!!

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Re: NED's are you following a diet & exercising or living your life as before?

Postby lpas » Thu Jul 30, 2015 9:52 am

In terms of lifestyle, I think the one potential change that has the most research behind it is regular exercise. Unfortunately, that's also been the toughest change for me to implement.
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

Nik Colon

Re: NED's are you following a diet & exercising or living your life as before?

Postby Nik Colon » Thu Jul 30, 2015 9:55 am

Pretty much the same as always, just currently NED after surgery in April and still doing chemo, 4 more tx (stage 4) so it's not completely the same, but it is for the most part. I choose to live as normal as possible as nothing in life is guaranteed.

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Re: NED's are you following a diet & exercising or living your life as before?

Postby DBF » Thu Jul 30, 2015 10:38 am

After I finished chemo I decided to eat a vegan diet and get regular exercise. I've done neither. If I've made any change, it's the addition of marijuana. :-) I'm much heavier than I was before all of this (I never lost pregnancy weight and gained even more during chemo).

My oncologist said that while switching to a plant-based diet would likely be good for my immune system, there's no solid evidence it would have any effect on preventing recurrence. He did say, however, that exercise would reduce the risk of the cancer coming back. He cited a study, but I don't remember what it was.

I have opted to do ADAPT therapy while NED, but that's the only real preventative measure I'm taking.
6/13 Dx @ 29 Wks pregnant, 42 yo
Adenocarcinoma, mucinous
7/13 C-sec/col resec/part. hysterectomy
8/13 Pulm embolism
8/13 Spread to liver
9/13 Liver resection
ADAPT: Xeloda/Celebrex
2/14 oopherectomy
10/15 obstruction surg
10/17 Scar tissue removal/vsg surg
2019: NED :D
2020: NED
Mom to 3 boys: 22, 11 & 7

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Re: NED's are you following a diet & exercising or living your life as before?

Postby Lee » Thu Jul 30, 2015 1:19 pm

I was always an off and on walker prior to diagnoses, I've been a religious walker since finishing chemo. I power walk 3-5 every week for an hr each day. I've been doing this for the past 10 yrs.

Have not changed my diet much. I've always loved my veggies, eat a lot of chicken and fish. Still love my burgers only now I really eat the lean stuff.

Was not overweight prior to diagnoses, did gain weight after diagnoses, am now at a healthy weight today and am a card carrying member of weight watchers.

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 - 16 years and counting!

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Re: NED's are you following a diet & exercising or living your life as before?

Postby elise » Thu Jul 30, 2015 2:22 pm

I made big changes to my diet to be as anti-inflammatory as possible. I also have arthritis so it's win-win. I exercise as well but I always loved it so that's not new. I say do what makes you happy and feel good!
Feb - Stage 2 (T3 N0 M0) CC @ 30
Mar - R hemicolectomy, 18 LN
May-Nov 6 - Chemo (8 Xeloda)
Feb - NED
Feb - NED
May - Stage 4 - 1 liver met @ 32
Jun - Liver resection
Aug-Jan - FOLFOX 5 rounds, 5FU X 6
Ap, Oct - NED
Mar - NED

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Re: NED's are you following a diet & exercising or living your life as before?

Postby Steph20021 » Thu Jul 30, 2015 2:29 pm

Elise is an anti-inflammatory diet like the low alkaline diet? Where did you learn about it?
DX 1/31/14 @ 33- SPS-T4a(invades visceral peri), N2a(6/106 LN), M1a(ovary) (Stage 4a) MSS; BRAF V600E
2/1/14-subtotal col, lost R ovary, temp ileo
3/14-9/14- folfox; sepsis
11/14-CT/PET: L ovary met, pelvic met, (?)ghost liver met(?)
12/14-folfiri -13 rds kept me stable from 3/15-6/15
09/15- cea 0.9
05/16- recurrence in abdo wall and lymph nodes
01/17- pulmonary embolism
02/17- 1 wk radiation to abdo wall
08/16- on folfiri
11/18- Beacon trial-encorafenib & cetuximab

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Re: NED's are you following a diet & exercising or living your life as before?

Postby Ron50 » Thu Jul 30, 2015 4:27 pm

At close to 17 yrs ca free post stage 3 c colon cancer into six nodes I was informed at 6 yrs cancer free that I was cured OF THAT CANCER. I was also told that the immune system actually does do a reasonably good job of keeping cancer at bay. My surgeon went on to say that quite a few things have to go badly wrong to get cancer but having fulfilled the criteria I will always be at risk of new cancers forming. His advice was to stay vigilant. Don't put off having regular tests like scopes. If you have pain that doesn't go away but slowly gets worse see about it. Don't ignore that show of red on the toilet paper , always get it checked. Have REGULAR health checks tho try not to get paranoid. Do everything in moderation ie what you eat ,what you drink, how you exercise. Try to limit the stress in your life including doing things that relieve stress ( for me that is fishing) . Give up smoking. If you can ,keep on working it gives you social interaction and helps pay those annoying health bills thus relieving stress. Accept that there will be things that you may no longer be able to do , so do the things you can. Accept that life may never return to normal and that cancer and the treatment you had may have long term impacts on your life . Enjoy as best you can the life you now have , it's the only one you have . Please understand that I am not preaching to anyone. You have to do what you feel is right for you. I am merely saying what I have done to get thru the most difficult time of my life. My survival has not been without issues. I have a lot of ongoing medical problems , nephrotic syndrome of the kidneys, severe motor sensory peripheral neuropathy, type two diabetes (steroid induced) ,severe lower back pain (steroid induced) , irregular heart beats (up to 11,00 premature ectopic beats a day, vertigo, sleep apnea ( on cpap permanently) , regular skin ca removal (from powerfull immuno-suppressants ) pulmonary and peripheral oedema (kidneys) endocrine problems including low testosterone (5.3) and thyroid hormones out of limits and psoriatic arthritis. At age 65 I still work and fish. Life can be a struggle at times because I live alone but so far I am getting by. Hugs 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

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Re: NED's are you following a diet & exercising or living your life as before?

Postby nitebreez » Thu Jul 30, 2015 5:59 pm

I turned 70, that is also a big factor for me to consider, as well as trying to keep cancer from recurring. I now try to religiously eat right (basic "real" food,...mostly veggies, a little fish and chicken now and then, etc. etc.)...exercise fairly regularly,..walk a LOT! Take suppliments and vitamins (also a LOT). In other words,...I take a very active role to try and do my part to stay NED. I'm only 4' 11" tall,...and my weight is really normal for my height and small bone stucture,..and I strive to keep it that way. Besides,...I like how I feel when eating right, and keeping active.
T4a-Nx-M0 cc (perforated colon) Septic shock
2/19/13 emergency surgery/colostomy
4/13/13 colostomy reversed (reconnected!)
1/22/14 folfox completed
3/3/14 CT Scan NED
4/15/16 CEAs still low

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Re: NED's are you following a diet & exercising or living your life as before?

Postby kiwiinoz » Thu Jul 30, 2015 6:12 pm

Everyone reacts to cancer in different ways. For some, all they want to do is carry on with life as normal as trying to understand their cancer, or make any lifestyle changes is too much on top of coping with the diagnosis and treatment. For others, for which the majority on this board seem to be or we would not be looking here in the first place, it is a chance to look at the overall picture and try to make changes to support the NED status to do their utmost to avoid a recurrence.

Personally I am into the knowing as much as I can, and doing as much as I can, in relation to cancer and avoiding a recurrence. There are two types of recurrence, local recurrence, and distant recurrence and I think that there is much more data on stages I-III and local recurrence which shows that diet, and exercise consistently seem to be a positive prognostic factor. The downside is that you have to be able to have a personality that enjoys change and be disciplined enough to be able to work out what and how to change and keep it up.

I have changed to a predominantly whole food, (organic) plant based diet and exercise (a lot). The studies all seem to look at a max of 30 minutes exercise 3-4 times per week, which is very achievable. My take on the diet is that a whole food, plant based diet reduces your IGF levels, and other inflammatory markers, which in turn reduces the environment for cancer to thrive in.

The biggest thing for me is that I feel better when I eat well, and I enjoy exercise so it is fine for me. If you are not in this situation it is harder.

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

justin case
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Re: NED's are you following a diet & exercising or living your life as before?

Postby justin case » Thu Jul 30, 2015 6:23 pm

I work my butt off,( literally), and eat what I enjoy! Hydration in the heat in my region, is probably more key. My wife left out the seasoning for tacos, for dinner. As I only worked 11 hours in 90 degree heat today, I 'd better get my butt in gear and have it ready :roll: She's worth it 8)
7/11 diagnosed Stage 2 colon and rectal cancer
lar/temp ilio
Reversal & port removal
21 round of chemo Folfox 9tx, 5fu 12 tx
Last treatment July 2012

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Re: NED's are you following a diet & exercising or living your life as before?

Postby weisssoccermom » Thu Jul 30, 2015 6:50 pm

One big important fact that I learned from this forum is that cancer doesn't make sense. There are theories, some 'studies', etc. that say, eat this, don't eat that, do this, don't do that, but....there are members on this board who, by all accounts, shouldn't have been diagnosed with cancer and they are. They eat well, exercise, don't smoke, don't drink, etc....and yet they were diagnosed. My onc was blunt about it....the studies regarding exercise show that the greatest benefit to patients (with respect to recurrence) is that the greatest benefit is to those patients who did NOT exercise before....not necessarily to those who did. Now, I would love to tell you that I have incorporated exercise into my daily life...but nope, I haven't. Should I? Of course I should but just haven't done it. My onc was also very clear that there are no clear cut studies showing any correlation between diet and recurrence. My attitude went through a tough time to get to where you are now. If YOU choose to eat a totally different diet because it makes YOU happy...go for it....but don't go changing anything because you think it may give you some sort of an advantage. The ONLY thing that I am more acutely aware of is the charring on the bbq. I make 100% certain that there's no more of that....because studies HAVE indicated a correlation between that and carcinogens that are present when meat is charred.

My what makes YOU happy keeping everything in perspective. BTW - the whole sugar free thing and 'feeding' cancer isn't accurate.
Dx 6/22/2006 IIA rectal cancer
6 wks rad/Xeloda -finished 9/06
1st attempt transanal excision 11/06
11/17/06 XELOX 1 cycle
5 months Xeloda only Dec '06 - April '07
10+ blood clots, 1 DVT 1/07
transanal excision 4/20/07 path-NO CANCER CELLS!
NED now and forever!
Perform random acts of kindness

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Re: NED's are you following a diet & exercising or living your life as before?

Postby NZJay » Thu Jul 30, 2015 8:37 pm

I've always been a keen weightlifter, so that has remained the same. However I've added an hour each day of exercising my german shepherd outside in order to get some vitamin D.

I have also added fresh salmon to my daily diet after reading this article: ... turn-study
11-13 Dx CC
SPS T4b(touched stomach organ),N1(3/23),M0(Stage 3B)
11-13: resect + partial gastrect
2-14: 1 Tx Cape + Oxy; renal failure, colitis
4-14: 7 Tx Capecitabine
1-15: clear CT
7-15: clear scope
1-16: clear CT
3-17: clear CT
10-17: clear scope (5 year gap now!)
CEA@dx: 8.4 / 6-15: 4.0 / 10-15: 4.2 / 2-16: 4.9 / 7-16: 4.9 / 11-16: 5.0 / 6-17: 4.5
NED since resection

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Re: NED's are you following a diet & exercising or living your life as before?

Postby Mastan » Thu Jul 30, 2015 8:41 pm

What Weisssoccermom said. I was an exercise and diet fanatic for years before I was diagnosed. No alcohol, no smoking, ect.. But here I am with metastatic disease. You can't exercise it away and you can eat it away. It is gonna to do what it wants to do. All you can do is try and slow It down if it is active.
Dx 6/2010 rectal CA

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Re: NED's are you following a diet & exercising or living your life as before?

Postby rwightman » Thu Jul 30, 2015 9:13 pm

I am another one who was an exerciser and a fairly good eater. I will say regular exercise and staying fit sure helps recovering from the surgeries. I have had 3 in the past 8 months and bounced back pretty quick after each. I start exercising again the day the doc gives me clearance.
10/9/14 DX Age 50 - MSS
10/23/14 - Colon Resection - Stage II - 0/15 lympth nodes
12/30/14 - Stage IV - 1 liver met 2cc - Liver Resection - No lymph nodes and margins clear
3/10/15 - peri mets
3/15 - Folfox with Avastin - 7 tx
7/15 - HIPEC - 2 peri mets
10/14 - resection of abdominal met
11/12 - 5FU

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