Any Stage IV currently in NEDville? Please share any advice or tips? P

[lovelife789]

My husband is stage IV and has been off chemo since June 2016. He had nodes pop up in both lungs and after close to a year of stability those nodes were removed. Right lung surgery in November and the left in January.

No chemo after those RFA and surgeries on the lungs?

[lovelife789]

I decided not to eat meat anymore (and I didn’t for about a year), only fresh uncooked fruits and vegetables, no alcohol.

I wanna be a vegetarian too. My problem is with only veggies and fruits, I'm hungry ALL the time, I don't mean just hungry but hungry to the point I would have a headache and feel dizzy. I can't be eating things throughout the day in the office... very tricky....

My brain didn’t return to pre-chemo ability. My memory is horrible.

This is one of the problems I have too. I used to be a very good presenter, sharp memories and quick in everything. Now my brain is faster than my tongue. I get tongue-tied all the time and short-term memory decreased by A LOT. But I don't complain if this is the price I have to pay to have my life back. Just live slowly and do everything slowly...

It gets easier when you accept your life, any outcome.

Good quote here, accept life, whatever it brings me.

[heiders33]

I have nothing against vegetarians, but I only eat grass-fed meat which gives you the benefit of the good stuff the animals are eating. I’m not giving up meat, just making sure I only eat well-sourced meat. Also not giving up alcohol.

[Russian27]

I feel like I can give up meat anytime but alcohol is a different story... I love to have a drink (beer mostly) Friday night.
The reason I gave up resveratrol and turmeric is because I started bruising easily. Especially if I take aspirin on top of that... Aspirin alone (baby aspirin) didn’t cause excessive bruising.

[LeonW]

. . . 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

[henry123]

. . . 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
And congrats on being NED now. Your first step is already there
Best Wishes, Leon

Very well explained.
But at the same time, it is not easy to resume normal diet and lifestyle knowing that they may have been partially responsible for the disease in first place.

[dianetavegia]

I was Stage III in Jan. 2009 and became Stage IVa when a small met was found on my liver in Feb. 2012. I had a liver resection that April, six years ago, and scans have been clear.

This past November my CEA was 4.3 and 5.8. I was very sick at the time with a 10 week old sinus infection. I did some research and saw that hypothyroid is a common cause of elevated CEA's and if untreated long enough, the CEA can be well over 100. I asked to be checked because of other symptoms of hypothyroid and my numbers came back double the high norm for hypothyroid. I've been on thyroid meds (3 adjustments now) since November and will have my CEA and scans in the end of March/ beginning of April.

My onc believes it's virtually impossible for this to be caused by cancer since it was so many years between my dx, met and the rise in CEA. Actually, my CEA had always been between 2.7 and 3.4 unless I was sick which would show a CEA of 4.4 (walking pneumonia).

I'm a little anxious about the upcoming tests but just have to have Faith!

I am so thankful for the 9 years I have been given!
Diane

[NedPlease]

Hi Love,

I’m still here living a life without thinking about cancer every waking minute. And that took years. Read my signature for treatment details.
I live in healthy moderation but always did really. Nothing extreme- an aspirin and Vit D most days, exercise most days, and occasional alcohol and red meat.

Nedsville is possible.

Best to you,
N

[Beccaschocked]

I was diagnosed in March of 2015 with stage IV colon cancer, mets to liver. Treatment included 7 folfiri + avastin infusions followed by a liver resection, followed by 6 more infusions on folfox.

Fast forward to October 2017, a stable long nodule began to grow. The single met was postitive for cc and removed via lobectomy. My oncologist, surgeon and integrative oncologist advised against chemo based on my pathology reports and a slew of blood tests.

Currently I’m NED. We’re monitoring blood monthly (I have a draw tomorrow, praying for good numbers!) and doing quarterly scans. It’s the scariest thing ever, but we’re remaining hopeful. Not to say I don’t have major doubts and anxiety!

Lifestyle; I am *mostly* plant based, take curcumin, fish oil, baby aspirin, and beta glucans as prescribed by my integrative oncologist. I also eat a lot of nuts and broccoli sprouts.

While my recurrrnce was a terrible setback and absolutely devastating, my oncologist was blown away that it remained stable over nearly two years and only began to grow when I took a “supplement vacation”. He has encouraged me to keep my integrative protocols and lifestyle changes up.

There are so many stage IV success stories out there, and always hope to be had!

Wishing you the best and sending love!

[Lee]

. . . (baby aspirin) didn’t cause excessive bruising.

I took baby aspirin for over a year several years back. I noticed over time I was bleeding easier. One day I backed into a palm branch that had a thorn, into the back of my leg. Nothing serious, butt that thing bleed for almost 30 mins. I was shocked, figured if I ever suffered a serious cut, I could bleed to death. I stopped baby aspirin after that.

Lee

[lovelife789]

3. About a litre of veggie juice mainly carrots, beetroots, pomegranate, greens , ginger and fresh turmeric sprinkled with black pepper.

Thanks for sharing! Yes I also did the juice thing with the so-expensive Vitamix, but it was all worth it. Since I was feeling nausea all the time during my chemotherapy sessions, I could not eat so much fruit to have enough anti-oxidants. The juice did wonder.

We may be living in different countries, but if you see papayas around where you live (and you can stand the aroma of it...), you can try adding papaya to your juice. It's believed to be good for our blood and help detox.

[lovelife789]

I feel like I can give up meat anytime but alcohol is a different story... I love to have a drink (beer mostly) Friday night.
The reason I gave up resveratrol and turmeric is because I started bruising easily. Especially if I take aspirin on top of that... Aspirin alone (baby aspirin) didn’t cause excessive bruising.

I'm the opposite, I love eating chicken, so I can't really give up meat. I opt for free-range organic chicken and never eat fried chicken...

The thing with bruising is interesting. Taking Resveratrol and Turmeric now... no bruising on me yet....

[lovelife789]

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)

Oh oh! that was you!!! I remember reading your signature exclaiming how you fought through those liver failure and failed liver embolizations... If I were you, I would have been so devastated!

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??

I tend to agree with you while I follow various diets... I think following any type of diets or starting any herbs or stuff like that does more good stuff to us mentally (indirectly give us a stronger body) than actual direct benefits to our bodies.

One of the reasons why I started this thread is because I'm being "advised" to follow so many different types of diets, it's getting out of control. Paleo, Mediterranean, vegetarian, vegan, whole food, no sugar (still confused what type of sugar to avoid other than white sugar, coconut sugar, stevia, brown sugar, cane sugar, honey, monk fruit, just a never-ending list ) etc. and the only diet that makes sense is the gluten-free diet, as I'm slightly gluten intolerant. I wanted to pick some brains here and see what are the common things survivors avoid and I will skip those instead of following any type of diet.

Thank you so much for your encouragement on enjoying life. It took me a long time to make the decision of quitting my well-paid job and give myself a "gap year" that I never had after college. I felt stress played a big part in weakening immune system for me hence the cancer cells in me could have a chance to throw such a big party.

Thanks again!

[AppleTree]

Dates are in my signature. Even though I am still doing Folfox (3 more out of 12 to go!), I consider myself NED because my scans are showing nothing! Hoping this round lasts longer than a year, I really think it will.

Since main surgery, salad goes right through me...within 1 hour. So, I will only eat maybe just 1 leaf on a burger, but not an entire salad! I can not seem to digest carrots, beans, peas or blueberries. Now I have figured out that I can boil mixed veggies in chicken broth, puree it all with a stick blender, add a little milk...voila! Healthy soup that stays IN me long enough for my body to get nutrients. Add potatoes as a thickener, if desired.

I have gone from 150 lbs *I am 5'8" to 114 last DR visit. But I feel pretty good. My goal is healthy calories, and hopefully after chemo I will put more weight on.

It does seem like EVERYONE wants to give you "helpful" advise. Or they read somewhere of some miracle cute, etc. But, I feel at least they are trying to help me, instead if avoiding the "C" subject. You have to decide what is right for you, know your body and what diet it is capable of handling, etc. If I tried to follow a raw veggie diet or something similar, I would loose more weight! Maybe "white" bread is bad for me, but you know what? It does not give me instant diarrhea. And things change over time, so you can make adjustments as you go.

[Ehut]

My response might be different than some... I was stage IV with 6 liver mets, diagnosed in late 2011, with chemo, radiation, surgery, and more chemo ending in 2012. I have been NED ever since surgery, which was almost exactly 6 years ago. I took several supplements after chemo ended: modified citrus pectin, coriolus versicolor PSK, Cimetidine, and Aspirin. I still take an 81 mg Aspirin every day, but stopped all the others. As far as lifestyle, I am largely doing what I did when I was diagnosed. No special diet, I don't avoid sugar, meat, or really anything. I did more walking exercise for a few years, but am back to my previous level of activity now. I have had 2 colonoscopies since my surgery and no polyps have been found.