lovelife789 wrote: . . . I have seen quite a lot of people's signatures said they are Stage IV and currently NED. I would love to hear from you
1. Anybody who has had a recurrence (or more) but didn't need chemo? Just surgical removal of the mets?
I had chemo for liver mets after the colon resect / before the liver job. Came out clean. No treatments whatsoever and also no recurrence since (4 1/2 yrs now)
2. Anybody who has had no recurrence at all, or anybody you know had no recurrence? The doctor kept telling me I have 40% chance of having no recurrence but I don't see that many cases here, may be they just don't bother report back?
You're probably right - once life goes back to normal, I'm less inclined to report. I still read here at least weekly, but have so little advice to offer now normal life has resumed. You all are still on my mind, though. But it also hurts to see the suffering. Survivors guilt, I guess.
3. I saw a few of you shared here the chance of recurrence or a complete cure depends on a few factors (like age, any chronic disease, clear margin from surgeries, lifestyle etc.). My doctors don't really agree with this kind of "formula" of estimating chance of any direction this disease takes
I'm with your docs on this. I convinced that getting struck by cancer is just bad luck: Any time cells duplicate, a few damaged cells escape being routinely killed. And with cells going astray all the time, there is a chance for escape every day. And as life progresses, the higher the chance that something accumulates/ brings trouble.
Re the elements of your formula:age
:I believe age is relevant. No way you can avoid getting older, though. Just live with it. chronic disease
: May cause (more) cells being damaged. You can't control this either.clear margins
from surgeries: Indicator of surgical success. Probably the most valid indicator together with pathology results.lifestyle
: One of the very few things one has control over, and (therefore) an easy choice if one feels lost in other areas of life. I doubt if changing life style can make a material difference, though. Find it hard to believe that going veggie after 30, 40 of 50 years will correct anything that has gone wrong earlier. Same for starting herbs, taking cbd or suddenly stopping all alcohol. No chance, I think, that starting a healthier (but unbalanced?) life will remove
anything. It may well stop accumulating for new trouble, but can this really make a difference when one is 40, 60, 80??
4. I saw a lot of you have HAI pump done, how's the feeling of having chemo pumped to your liver? Are the side effects as bad as FOLFOX? I had Capox and found the treatment bearable.
As I've said elsewhere on this board, I found the predictability of the cycles comforting: the no-pills-week (every third week) meant another significant step made. It also gave strength to commence a next cycle / to accept/survive the first 3-4 days of sickness of the next cycle.
5. Those at NEDville already, is there a special diet or advice you can share to increase chance of staying in NEDville for longer? I heard baby aspirin, curcumin, no meat, antioxidants, anything else?
I don't think so - see lifestyle above. Just celebrate and try enjoy life again. Also count your blessings whenever there is reason for.
I am afraid the happier I am now, the harder I will fall if (knock on wood) it comes back, so I want to be prepared mentally.
It'll take a while before life resumes. In the mean time take it by the day and - most important - also prepare yourself that things may sometimes go right. Celebrate each little victory.
And congrats on being NED now. Your first step is already there
Best Wishes, Leon