Staying NED from recurrences just "Blind Luck?"

[nitebreez]

I am about 4 months out from chemo. I'm now pretty paranoid and fanatical about trying to do all that I can do to possibly deter any recurrence. This includes taking herbs and suppliments, vitamins, etc. etc. etc. (like PSK, cementidine, D3, Omega 3, you get the picture).
And then there's the change in diet, (no sugar, no processed food, more vegetables, etc. etc.). Added to that I do the exercise, at times walking up to 6 or more miles at a time, and the exercycle when I can't get outdoors.

Then I run into a woman at the bus stop. We start to chit-chat. Seems that she had stage III colon cancer 6 years ago with just the surgery and no chemo at all (surgery done at a little local community hospital). By her own admission (and appearance) she never exercises nor eats right. I'm thinking that I'm doing all this stuff I'm doing to try and stay NED,....and she's NED for 6 years whilst doing NOTHING. <sigh>

Well,...I told her that actually is quite encouraging, and thanked her so much for telling me about having had colon cancer. Very inspirational to say the least. But I'm NOT stopping my regimen (just in case keeping recurrence at bay isn't just blind luck!) LOL.

So okay,...anyone else like me and is completely paranoid about staying NED? Or like this woman, say "What the heck...it's a game of roulette anyhow"...?

[Voxx66]

I'm fairly sure that no amount of diet, exercise, or supplements will change your risk of recurrence in a meaningful way. It might make you feel better in general and help protect you from other illnesses but I think recurrences don't work that way. Others may disagree.

[gfpiv]

Just as treating your body "poorly" doesn't guarantee you will have a recurrence, neither does doing everything you know of to treat your body right guarantee you will not have a recurrence. IMHO it's all about improving the odds - even slightly - in your favor. And even if it turns out none of those things even do one iota improve your odds against recurrence, at the very least they probably won't hurt your odds. And eating better and exercising more is a good thing for just about everyone's health.

I sometimes have the feeling that if the conditions in my life and body were receptive to stage IV cancer in the first place, then I shouldn't be surprised if I don't change/improve anything and it eventually comes back. But who knows, life could be one big crapshoot (ugh, no pun intended).

[chemo sabe]

You are asking the million dollar question. The medical community has not yet discovered why some of us get polyps and CRC and some do not. No one knows the future other than the fact if we wake up tomorrow, we are all one day closer to death. That does not mean I am reckless with my life, it just means that I accept my own mortality.

Having rambled on about that, I just have to ask, with all stuff you are taking, why you haven't asked your Oncologist about an aspirin regimen.

[JDinNC]

Hi nitebreez,

I know how you are feeling...my last treatment was. Feb. 24th. and now NED. Though the thought of recurrence is always on my mind. I've spent hours of researching in hopes to find the magic encouragement that will tell me I can survive. Though after reading everyone stats on the board it tells me that cancer will usually comes back but these folks here shows me that you must fight. I'm stage 4, with a survival rate of 8% to 12%', not promising but I 'm not relying on statistic but on my courage, strength and stubbornness to beat this.and if things don't work out my way, at least I know I did everything possible.

Like you, I'm doing supplements and herbs taking about 8 pills x 4 a day. As for exercise, I basically walk but I like to build things so I'm always lifting and carrying heavy stuff so I get a good cardio workout. I was always healthy, not even getting a cold, hardly ever drank sodas, I did have a sweet tooth but there was never any candy, ice cream or cookies in the house to gorge on. It was usually bought as a treat.

'I'm always looking for inspirational stories and you found yours. Take that positive feeling and hold it in your heart and don't ever lose faith. If you would like to PM me to compare herb/ supplements..I would be glad to exchange notes.

Jan

[nitebreez]

I just have to ask, with all stuff you are taking, why you haven't asked your Oncologist about an aspirin regimen.

...actually that's one of the things I have been taking, with all the other stuff. (That's one of the things included in my putting "etc. etc. etc".) Yeah,..I feel like it has benefits. Guess I just have to feel like I'm doing all I can do. Then at least if I have a recurrence, I can feel like I really tried, and gave it my best shot. But we never really know for certain if something works or not, I guess.

[kiwiinoz]

Hi nitebreez,

I'm stage 4, with a survival rate of 8% to 12%', not promising but I 'm not relying on statistic but on my courage, strength and stubbornness to beat this.and if things don't work out my way, at least I know I did everything possible.

Like you, I'm doing supplements and herbs taking about 8 pills x 4 a day. As for exercise, I basically walk but I like to build things so I'm always lifting and carrying heavy stuff so I get a good cardio workout. I was always healthy, not even getting a cold, hardly ever drank sodas, I did have a sweet tooth but there was never any candy, ice cream or cookies in the house to gorge on. It was usually bought as a treat.

'I'm always looking for inspirational stories and you found yours. Take that positive feeling and hold it in your heart and don't ever lose faith. If you would like to PM me to compare herb/ supplements..I would be glad to exchange notes.

Jan

Jan

If I recall correctly you had 1 lung met resected. Hate to rain on your parade with a little bit of sunshine but the 8%-12% you quote is the general population of stage IV overall and for your select group the rates for DFS at 5 years go from 25% to 65% depending on what study you read. My onc, who is always a very conservative fellow is of the "synchronous met will put you at the 30% level and we can discuss the merits of that in 5 years" group.

Kiwi

[kiwiinoz]

Nitebreez,

Totally understand your feelings. I have a friend in his late 50' who eats, drinks and smokes whatever he wants and does no exercise at all. His health suffers but he has not had cancer, although he has a few other health issues.

It is all a game of roulette, but like any game of luck you can do things to increase your odds that may or may not work. The only time you find out of they don't work or not is by having a recurrence so it is a sort of perverse logic.

I have always eaten healthily but have become more radical since diagnosis and I am on the 100% wholegrain, no bovine milk, no meat (always been my personal preference) and lots of veggies with low carb diet (apart from my cereal in the morning which is mostly carbs). I take green tea extract, curcurrmin, selenium, vitamin D, Vitamin E, fish oil, multivitamins, Glucosamine. I run about 30 miles a week.

I view cancer as an immune and inflammatory disease and everything I can do to reduce that the better odds I have. However if it was that simple I would never have got cancer in the first place.

I am sh*t scared that I will have a recurrence and every time I increase my mileage and get new pains after a long run I always have thoughts of a recurrence.

Eric (our mate BB) always told me that he lives his life as if it will be a long one as you never know it may just be. I think that your fears are 100% natural and you keep just doing what you are doing until something shows you otherwise. You need to learn how to deal with your fears as you are doing all you can and can't do more than that.

kiwi

[Bev G]

Yes Kiwi, thanks for pointing that out. A lot of oncs are now saying 1-3 synchronous mets in one organ conveys about a 50% five year survival. That's A LOT better than the 6% I was originally given. The more I think about it, the more I think no one should be given 5-year odds...not because we're not adults, but because there are many factors that need to be considered. And just wait until all the immunotherapy kicks in as real treatment!!! then we'll really have somethin' to talk about!

Onwards to the cure.

And to the OP, I am 4.25 years out from my stage IV diagnosis, and I never took any supplements. Geez, I can't even get my D3 up to normal. I can't exercise because of my still stupid broken ankle (going on 4 years now), and while I eat reasonably I haven't changed my diet in any big ways except I only drink/eat non-hormone fed stuff. I have never had any new cancer since diagnosis. I hope you will experience the same good luck. Frankly, I think that's all it is.

Best wishes,

Bev

EDITED TO SAY: KIWI, I was responding to your next to the last post re: the OP's odds being better than stated. I think you wrote your second response while I was typing

[NWgirl]

I have mixed feelings on this. I think for some people, diet, activity, positive attitude, etc. MAY plan a role in whether they have a recurrence or not. For some, we're just going to have a recurrence no matter what we do. Statistics are there for a reason - they can tell you statistically what your chances are for a recurrence - some people beat the odds, some don't. The frustrating thing is we don't know who will benefit from doing all the right things and who it won't make a bit of difference for.

If doing all these things is making you feel better - mentally, physically, emotionally - then keep it up. It certainly won't hurt you and as previously mentioned - we know that these changes WILL put you in better shape to ward off a host of other problems.

I tried to do all the right things and I still had a recurrence. But then I had 27 lymph nodes affected - so according to one oncologist, it wasn't a matter of "if" it was a matter of "when" and he was surprised it took as long as it did to show up.

So from all the things I used to do, I pick and choose what I want to do at this point. Because I honestly don't think any lifestyle changes will save my life at this point. But some things I enjoy. Like going for walks when I have the energy to do so. It makes me feel better - so I do it. Eating really crappy makes me feel crappy - so I try to make decent food choices - but I don't always. I love a good micro brew or a nice glass of wine - so I enjoy them when I feel like it - but generally only at the end of the day because I know they'll make me too tired if I have a beer with lunch. Supplements made me feel better physically - but I hated taking handfuls of pills morning, noon and night - so I've given those up and mentally - I feel better.

Pick and choose what works for you and gives you the most benefit.

[CRguy]

Staying NED from recurrences just "Blind Luck?"

In my case obviously Dumb Luck …… for about the first three years anyway …… THEN
Lightning Strikes Again.

NOW back to Dumb Luck again and I will update y'all mid June'ish ……

IF….. IF
everything "they" say would prevent CRC …DID …… I was the poster boy :
diet
exercise
enjoying life
living large
good CRC genetics = NO CRC relatives

SO ….. why am I NOW a Stage IVa survivor (gratefully !!!!), when according to THEM ….. I should not even be here ..??????

JMO
I guess

I'll go now……

Cheers all
CRguy

[Cathie]

I have been NED for about 10 years.........

In the early years it consumed my every thought. Then one day I realized I hadn't thought of it for several hours, that turned into a day and then several days at a time.

Cathie

[skypup]

IF….. IF
everything "they" say would prevent CRC …DID …… I was the poster boy :
diet
exercise
enjoying life
living large
good CRC genetics = NO CRC relatives

SO ….. why am I NOW a Stage IVa survivor (gratefully !!!!), when according to THEM ….. I should not even be here ..??????

Yea, same for me (poster girl to your poster boy) and here I am now stage IV inoperable. After Dx at stage III I upped my exercise a BUNCH and ate a super good diet. Perhaps that is why I made it longer than many before mets took hold, but here I am... so I indulge a bit more now.

[JDinNC]

Kiwi,

Just learned a new word...synchronous. What's the different between synchronous and metachronous? You used it in a response to my post. Could you explain what it means to my cancer.

Thanks,
Jan

[kiwiinoz]

Jan
Synchronous means that you have metastatic cancer at time of diagnosis, and thus stage IV, and are more advanced meaning you have a more disseminated disease. Of that Stage IV group there are some that are operable, and that can be with curative intent, or palliative intent.
Metachronous means that you were a lesser stage at diagnosis and that your cancer has subsequently metastasized.
The theory is that those that are metachronous have a slower growing, less aggressive disease and that there is a greater chance of those metachronous patients being cured that a synchronous patient.
Within the stage IV curative subset there are other sub sets that the oncologists like to break down into those that have a better prognosis and those that have a less positive prognosis, synchronous vs metachronous is one such thing, but there are many various measurements such as CEA levels, number of mets, size of mets, etc.
Happy to PM you studies if you want them, and I've read a lot Still doesn't change the outcome and means nothing until you have a recurrence in my opinion. Guess it comes down to if you like to know our odds and if knowing your odds is positive or negative for your mental health.
Kiwi