Questions for 5+ yr NED'ers (especially Stage 3 or higher)

[AnnClare]

I know there are quite a few folks here who've well passed the five year NED mark.

As I near the end of my chemo, and want to ensure the best possible odds for long-term cure / NED status, I was wondering what you folks have done over the years in terms of diet & lifestyle? Are there certain foods you incorporate? Some you avoid? I've read several books on what we c-folks should do, but oftentimes the information is contradictory. What one doctor/researcher swears by is what another says is bad. (Milk and dairy are bad; no, they're good sources of protein, etc.)
I don't drink milk daily but always have 2% organic in the fridge, as well as organic half & half (for coffee). And what about supplements?

Since my Dx, I've begun drinking green and white tea daily as I've read they're particularly good for CRC patients. I also take curcumin & boswelia (both with my onc's blessing.) I try to walk daily (20 minutes) plus some body weight strength training and a few yoga moves. I know exercise is excellent at improving prognoses, so I'm adamant about remaining active (not as active a I used to be, but I'm trying to not be too hard on myself given all that my body is going through!)

Anyway, just wanted to reach out to you guys and pick your collective brains for any tips and wisdom you could share.

Thanks in advance!!!

[Utwo]

My son (he is a resident now) told me "Dad, what you eat is not that important at your age. Healthy eating is mostly for young folks."

So, enjoy your life and do not worry too much.

[radnyc]

Hi, what you're doing sounds right. I would recommend in addition vitamin d3, daily, 5000mg, a milk thistle supplement, coriolus versicolor psk, and if you're done with chemo a daily regular strength aspirin. When ready, I would definitely UP the exercise level to include more vigorous activities, running and weight lifting. You should aim to be fit, not overweight. No smoking and alcohol in moderation. As for diet I cut down on meat and eat more greens and try to go organic if I can. Eat healthy, don't need to go nuts about it though.

UTwo, I don't agree at all with your son's advice at all eating well and watching what we put into our bodies is extremely important at ANY age.

[esk2poo]

I may be rare but 5 years NED. Played many sports and very active until family life and work hit hard in my 30's. Still no activity at all other than the 4-5 miles I walk a day at work. Eat nothing healthy at all unless 1% milk fits that category when I eat my devil dogs at night. Quit smoking for the 7 months I was out of work and doing chemo but a strong pack a day since returning.
Other than the price of cigarettes, I saved a lot of money on juicers, supplements, ionizers, and crap like that because I didn't buy them. Works for me.
Good luck,
Allen

[horizon]

Regular exercise, rarely eating red meat, not drinking or smoking, maintaining a healthy weight, etc was what I was already doing before I was diagnosed. I asked the question you have to my medical team and they didn't have any answers. I take vitamin D3 daily now. I make an effort to eat healthy foods but if I want a piece of cake once in a while I have one.

[testing765]

Hi. I do not have 5 years NED, but I would like to someday. Here are some things I have done.

My Vitamin D level was below normal when I was first diagnosed. It took a long time of mega-doses to get the level into the normal range. Now I supplement with Vitamin D just to keep it in the normal range. I was a big green tea drinker for years before the diagnosis, I dont drink it so much now. I take a low dose aspirin. I dont drink alcohol or smoke. I started eating fish high in fish oils. I was also diagnosed with sleep apnea before being diagnosed with cancer (lucky me lol). I recently started wearing the oral appliance designed to treat the apnea. That is supposed to help with weight loss too. Somehow, the sleep apnea and the weight gain are connected. And my goal is to get and stay at a healthy weight. I ended up with really bad neuropathy from the chemo so that impacted my exercise and overall activity level. Good luck to you.

[AnnClare]

Thanks for the input, guys. I really appreciate it. I have liquid Vitamin D3 - I was taking it regularly, then stopped. I'll make sure to include it daily.

Seems like everyone's experience is different, LOL. Like many, I was a "healthy eater" before, scrutinizing ingredient labels, trying to avoid the "bad" stuff (corn oil, soybean oil, to name a few.) I've never smoked, enjoy red wine on the weekends and the occasional beer. I'm not one who drinks to excess, but when I do want a glass of vino, I'll have it. Ditto for the occasional sweet treat or chicken tenders & fries meal. (We have a local chain that makes THE BEST chicken fingers. When I'm "on the juice" I'll sometimes hit up their drive-thru.)

Any milk & eggs we buy are organic. I can't afford a 100% organic grocery bill. Due to my ileostomy, raw veg and salads don't especially work well for me at the moment. I had a small salad the other day and let's just say, the next day wasn't so nice to me. I do enjoy cooked cabbage, baked sweet potato, oatmeal, Greek yogurt, kefir, baby carrots, etc. I do still have the occasional serving of red meat, but it's not even on a weekly basis. My mother-in-law is a FANTASTIC cook - if she sends us some lasagna, no way am I going to say, "I'll pass."

I recently "confessed" to my onc that my diet on chemo is worse than it was before my Dx. He said not to worry about it so much right now since my body is in a state of imbalance as is. He's big into nutrition and integrative therapies, so I trust his opinion. (The onc who treated me during radiation told me to eat from the "four basic food groups." I almost laughed at him. Sorry, dude - there's been no such thing since what, the 80's? He was clearly out of touch - and he's not an older guy. He should know better. But I digress.)

Once I'm done with treatment and have recovered from my ileostomy takedown, I intend to up the exercise. I'll still have to be cautious to not overdo it (as I'm prone to do) as I don't want a hernia. I was a jogger in my 20's, but to be honest, I hated it. Walking is my friend. Plus my job (massage therapist) keeps me from sitting on my bum all day. It's great not being tied to a desk & phone - there's 18 years of my life I'll never get back!

Milk thistle is another thing I tend to add (thanks, radnyc!) My onc is on board with that, as well as the aspirin (currently using the low dose, 81 mg.) I temporarily stopped that as last weekend I had a nosebleed. (Thanks, FOLFOX! You're the gift that keeps on giving, aren't you? ) Beta glucan is another supplement I take daily, as it's supposed to be especially good for CRC folks, AND it's purported to enhance the effectiveness of chemo.

I appreciate all the feedback, guys. Thank you so much.

[dianetavegia]

I'm 7 years 9 months since my diagnosis of Stage IIIB. In Feb. 2012 one tiny liver met was found. I had 80% of my liver removed in April of that year. It's been 4 1/2 years now since that surgery. I had my CEA today and will have scans MRI/ CT on 9/29. I had no chemo after the liver resection. I'm now Stage IVa (my onc ups the stage when disease progresses).

I have not eaten red meat for 8 years. Since chemo ended, I take 2 full strength aspirin daily. It takes 6,000 IU's of Vit. D 3 to get me to the high norm (Labcorp) of 100nl. I take that daily. I take a Centrum for older women.

I've just recently joined a gym and attend class Monday, Wed., and Fri. I do 3 hours on Monday and 2 hours the other 2 days.

I still have CEA and scans every 6 months, tho studies have shown that at 6 1/2 years post HP you are cured with a 99% certainty.

[crazylife]

I'm 7 years 9 months since my diagnosis of Stage IIIB. In Feb. 2012 one tiny liver met was found. I had 80% of my liver removed in April of that year. It's been 4 1/2 years now since that surgery. I had my CEA today and will have scans MRI/ CT on 9/29. I had no chemo after the liver resection. I'm now Stage IVa (my onc ups the stage when disease progresses).

I have not eaten red meat for 8 years. Since chemo ended, I take 2 full strength aspirin daily. It takes 6,000 IU's of Vit. D 3 to get me to the high norm (Labcorp) of 100nl. I take that daily. I take a Centrum for older women.

I've just recently joined a gym and attend class Monday, Wed., and Fri. I do 3 hours on Monday and 2 hours the other 2 days.

I still have CEA and scans every 6 months, tho studies have shown that at 6 1/2 years post HP you are cured with a 99% certainty.

Diane - why did they take so much of your liver if you had 1 met? DH had 1 met and they took a lobe of it.

[rp1954]

I'd do more of a rationalized supplement list AND more blood tests for follow up.

With some advanced blood tests, it may be possible tamp down cytokine cancer precursors. With an expanded series of common commercial lab tests, one can actually see the "bullet" coming long before it is scannable. Strictly speaking I'm following low residue CRC mets, biologically (and statistically, molecularly) more like those 3C patients who actually recur quickly.

The only problem is who watches the tests. For patients, the various unknowns and uncertainties can cause stress the first time. Right now, there is not the blood marker equivalent of a colorectal surgeon. If a cancer bullet is forming, a rise and the uncertainties will cause some degree of stress over the months, perhaps 6 months or more. On the other hand, in those cases that a cancer recur might have non CEA markers seriously rising in 2-3 months, waiting until the mets scan in 6-9 months can be a total disaster. At length, a better followup program can be a confidence builder whether cured or not. I say this after several cycles where the practicalities with standard of care and doing less would have crashed and burned.

[Bev G]

I'm 7 years 9 months since my diagnosis of Stage IIIB. In Feb. 2012 one tiny liver met was found. I had 80% of my liver removed in April of that year. It's been 4 1/2 years now since that surgery. I had my CEA today and will have scans MRI/ CT on 9/29. I had no chemo after the liver resection. I'm now Stage IVa (my onc ups the stage when disease progresses).

I have not eaten red meat for 8 years. Since chemo ended, I take 2 full strength aspirin daily. It takes 6,000 IU's of Vit. D 3 to get me to the high norm (Labcorp) of 100nl. I take that daily. I take a Centrum for older women.

I've just recently joined a gym and attend class Monday, Wed., and Fri. I do 3 hours on Monday and 2 hours the other 2 days.

I still have CEA and scans every 6 months, tho studies have shown that at 6 1/2 years post HP you are cured with a 99% certainty.

Diane, that's A LOT of aspirin!! Is that something your onc told you to do? Aspirin is not an innocuous drug. Just a little worried about you taking that much.

xox Bev

[John72]

Hi Ann,

I exercised regularly, never did smoke except for occasional cigar, and limited red meats for a long time but lately Langers #19 pastrami sandwich has been beconning. I drink on occasion...not every week, but I like beer and when I go to a concert or baseball game, I have a few beers.

Honestly don't think it matters too much. Exercise and healthy eating are part of good health. But outside a study showing regular exercise may help prevent recurrence, there isn't any hard evidence of anything else.

People don't like to hear it because they want to be in control, but I really think it's luck of the draw. I mean it's all scientific, but we don't know all the science behind it yet. So it's a huge combination of factors and we don't know exactly how all those factors play out.

My personal advice and how I viewed it...live as well as you can while you can. Look at what happened to Jose Fernandez...paragon of health, by all accounts was a really good person who loved his family, friends, and life. And it's taken just like that. Enjoy good health for as long as you have it, try to stay healthy and do the right things in life.

[AnnClare]

John - thanks for your input, experience, and advice.

I agree: I think we all grasp at any and all straws trying to believe we have some semblance of control. Hell, I did all the "right" things for most of my life, and where did it get me, right? I intend to continue to eat healthy, but if I want fries, I'll have them. Ditto red wine, beer, and the occasional margarita.

Exercise makes me feel better, so I'll absolutely keep that up, listening to my body and not pushing myself too far.

My onc says he doesn't want me to live my life waiting for the other shoe to fall. I'm sure the farther out I get from Tx, the less I'll focus on "what if". For now, I'm going to try to help my body repair itself after these past 6 months of Tx. I look forward to getting my life back on track and not having to go to the dr. and/or Tx center all the time!

[sadysue]

No words of wisdom from me, unfortunately. I am doing the same things now that I did before being diagnosed, except for one thing. I road a motorcycle for many years and I loved it. Once my son was grown, any vacation I took was a road trip on my Harley and I put lots of miles on the bikes I owned over the years. I had to quit riding since I now have neuropathy in my hands and feet. I am lucky though - I can still ride my horses, where I first discovered my "need for speed" at a very young age. Oops, had to make an edit to my post. I now take vitamin D3 plus calcium and also a cod liver oil pill every day. I eat the same (never ate much red meat), not a smoker, occasional alcohol and I walked 6-8 miles five days a week for three years before my dx. I never got sick, not even a cold for as long as I can remember. And then came cancer!

[Utwo]

UTwo, I don't agree at all with your son's advice at all eating well and watching what we put into our bodies is extremely important at ANY age.

radnyc, it was a conversation about carcinogenic effect of red meat.
Most carcinogenes have very long induction period. My son's message was that eating red meat would not cause an additional risk at my age.
He found this information on Medline.

By the way, similar to other contributors to this thread I rarely ate red meat, have not even tried to smoke, my drinking on average was less than one drink per week, I had a lean body, moderately exersised, had limited consumption of sugar ...
It did not help me.