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Stage IV 5 years NED

Randy33
Posts: 53
Joined: Jan 2011

I saw my doctor yesterday. My CT and X ray scans were clear so I've gone 5 years NED. I asked him if I was cured. He said as far as he was concerned I was. He said he couldn't find any data to support that because so few stage IV patients go 5 years NED. Does anyone out there know when someone stage iv can be considered cured? To be safe I will have CEA tested every 6 months but no more scans unless my CEA goes up significantly. I feel so happy! I plan to continue with my program. I think I'm addicted to the exercise, the diet is no big deal for me, and the supplements only cost around $50/mo. I may cheat a little bit on the diet to include red meat and ice cream once on a while. For those new to the Board my program was as follows:

1. Exercise 3 hrs/day (walking, yoga, weight lifting, and running)

2. Mediterranian diet ( No red meat, limit sugar, saturated fat. and refined flour. Lots of vegatables, fruit, whole grains green tea, and tumeric)

3. Supplements ( resveratrol, grapeseed extract, fish oil, vitamin D3, Co-Q10, ,aspirin, and a multivitamin)

4. Avoid stress

5. Prayer

6. Visualize my anti-bodies attacking cancer cells

Its worked for me it could work for you.

        Randy

 

 

janderson1964's picture
janderson1964
Posts: 1830
Joined: Oct 2011

Congratulations Randy. Thanks for posting the good news. We could all use some inspiring good news.

dorookie's picture
dorookie
Posts: 1702
Joined: Jul 2007

That is awesome news, i too just pasted my 5 years as a stage 4 survivor.  I often find it a bit confusing when talking to people, when i say i am stage 4, everyone gets a sad look on their faces, but i tell them i am cured and it causes a confused look on their faces.  I started telling everyone i was in remission, but i dont like that word, it has just a negative feeling to it.  So i say i am cured, that GOD has plans for me, i am just waiting to find out what those plans are exactly...LOL

I feel very blessed to still be here and doing my best to not waste any time. :)

 

Again wonderful news!!!!

Three hours of exercise EVERY day?  How do you find the time with that?  I work 50+ hours a week, stress is something that tends to find me but i do try to rid it of my life when i can.  Take care of yourself!

 

HUGS
BETH

Randy33
Posts: 53
Joined: Jan 2011

Congrats to you too Beth! What did your doctor tell you when you hit the 5 yr mark? Did he say you were cured? Also what will be your testing schedule? I'm retired so I have time for the exercise. I walk the dog for an hour first thing in the morning then do a half hour of yoga. In the afternoon I either go to the gym or run for an hour followed by a half hour walk. I am glad you hit the 5 year mark and good luck in the future.

     Randy

 

devotion10's picture
devotion10
Posts: 642
Joined: Jan 2010

First, congratulations on getting to the five-year mark with no evidence of disease. Your personal health regimen is impressive and no doubt has contributed, if not to keeping your cancer at bay, certainly to you likely feeling really well. Three hours of exercise a day? Wowsa. I haven't gotten out of my jammies yet today :)

Cure versus remission are two words that have such strong emotional value. My husband and I discussed this at length at one point … he felt that once an individual is diagnosed with cancer, remission is the correct description when one has no evidence of disease. He preferred it because it acknowledges the proven reality that cancer can return even though all signs and symptoms have disappeared.  He felt that this keeps vigilance alive with testing and emphasis on optimum health that could prevent a reoccurrence, or catch it early.

I agree with him that remission seems a more factually descriptive term than cured. Sometimes doctors will say that if a cancer patient has remission for five years or more that they are cured … but, it is a fact that cancer cells can remain undetected in a person’s body for years or even decades after apparently successful treatment, and these cells may eventually cause a recurrence. Doctors cannot say with any certainty that an individual cancer patient is cured. The most they can say is that there are no signs of cancer at this time. Continual monitoring and tests to look for cancer’s return are vital and also your doctor can look for signs of delayed adverse effects from cancer treatments. 

Some folks will want/need to embrace the word ‘cure’ to help them in their journey, as it feels more positive ... in a way, does it matter? If one has no evidence of disease this is celebratory at one year, five years, or ten years. Just don’t become complacent … I don’t think that you will because you seem quite vigilant! If CEA has been a good and reliable marker for the presence of cancer then that may be sufficient as you move forward, if not – maybe request some additional scans as added insurance that if something does appear, you may catch it early.

Again, congratulations. 

Peace. ~ Cynthia  

Randy33
Posts: 53
Joined: Jan 2011

Thanks Cynthia! When I began this journey for some reason I thought 5 years was the magic number that meant you were cured. So that became my goal. I never really discussed it with my docotr because I was afraid I would jinx myself. Then when I hit the 5 year mark I asked the docor if I was cured. He told me technically he really couldn't say I was because of the lack of data. He could tell how disappointed I was so he told me as far as he was concerned I was cured. I think I really needed to hear that because I am goal oriented and don't like leaving something unfinished.I wanted this to be over.  Does that make sense? I wish there was some way to determine if you are cured to you could put this all behind you.

       Randy

devotion10's picture
devotion10
Posts: 642
Joined: Jan 2010

It will only have to be in front of you if you have a reoccurrence!

janderson1964's picture
janderson1964
Posts: 1830
Joined: Oct 2011

I agree with not using the word "cure". I also dont like doctors tellingnthe patient that they are "cancer free" after surgery when what they sould say is they removed all visible  cancer.

PatchAdams
Posts: 272
Joined: Nov 2011

I was dx'd Stage IIIB and that was 5 years ago but I had a met to  my liver at 3 years.  I asked my onc and he said not only did the clock start back at 0, but he won't use the word 'cured' for 10 years. 

I'm with Beth. I never liked the word 'remission' because that implies 'it's gonna come back'.  I used remarks like cancer free at my last test or NED but never used remission.  Recently I've had to educate some people about Stage IVa and reassure them that I'm not going to be falling over TODAY, that as of now, I have no known cancer.  One asked, 'well what comes after Stage IV' and I told her.  She didn't ask any more questions! 

Randy33
Posts: 53
Joined: Jan 2011

I guess my main question now is what are the statistics for a recurrance after 5 years NED. Do the stats exist? My onc doesn't know. It seams as much as this disease has been studied they should exist somewhere. Does anybody out there know?

        Randy

Nana b's picture
Nana b
Posts: 3041
Joined: May 2009

Your ONC knows what stats are. Although I read today that stats include those in clinical trails. I tried to find the article.  My ONC will never say cured, he says he can't speak for cancer cells that are naked to the eye or CT or Pet.   I found this article but don't have time to go through it.   I have to get out the door.  

 

http://www.cancer.org/acs/groups/content/@epidemiologysurveilance/documents/document/acspc-037389.pptx

 

 

Randy33
Posts: 53
Joined: Jan 2011

Thanks Nana for sending the link. I checked it out but there were no stats about survival rate after 5 yrs NED. My onc says he has looked for the data but can't find any. I have also searched but no luck.

    Randy

marbleotis's picture
marbleotis
Posts: 526
Joined: Mar 2012

It is amazing some of the insensitive questions people ask.  They know you have cancer and are dealing with it then they start asking mortality-driven questions.  Really......

I really do not share with many about what I went through and continue to manage through.  I do speak at a Wellness Support group for people just completing chemo and transitioning to post-chemo life/exercise.

devotion10's picture
devotion10
Posts: 642
Joined: Jan 2010

You have survived your cancer for five years after your diagnosis.

Your treatments have been effective.

You have no evidence of disease with clear scans.

You can't be considered cured because that is not the nature of this disease.  There is simply no crystal ball to predict the future. It is absolutely unknowable if you have microscopic disease that evades screening techniques, if a new cancer will appear in the future, or if you will never have to deal with this again except for the occasional surveillance testing.

There are so many individual factors that influence the course of this disease that you may have to accept the unknowable.  Seeking an absolute, in my opinion, may just continue to frustrate you.  There will always be a lag between research and your particular case.

Five years is a benchmark where you can certainly take a deeper breath than those who are in the earlier stages of their disease and treatment.  Your disease-free interval has allowed you to lead a productive life. Five years is a point beyond which there are rare occurrences, but they do happen.

I know how much you want to put all this behind you. 

My advice Randy: Have fun! Keep exercising! Enjoy all that good food! Walk those dogs!  Keep praying! Imagine those antibodies in attack mode! Be here now and live!

Peace. ~ Cynthia

Nana b's picture
Nana b
Posts: 3041
Joined: May 2009

http://www.curetoday.com/index.cfm/fuseact!.PrintArticle/article_id/214

 

 

 

 

marbleotis's picture
marbleotis
Posts: 526
Joined: Mar 2012

Guys,

I prefer NED and I will tell you why.

NED as we know means "no evidence of disease", ok we are good, but "evidence" is the word we need to focus on.  If our CEA's and good, scans are good, colonoscopies are good, then we remain with no evidence.

If we say "cured" then we think / or may thnk I am done with this and let the guard down.  As un-willing members in the cancerclub we cannot let that guard down. 

Using NED reminds me:

  • what I had (cancer),
  • how it was dealt with (surgery, chemo)
  • how I need to continue to deal with (CEA's, scans, colonoscopies, Onc appts......) 

At 2 years NED I am so thankful, but also understand that my guard needs to always be on.  It is a sad side-effect of what we went through.

Each day I try to be a better person and focus on using this time as the gift that it really is.

We each need to be comfortable with what we choose to refer to ourselves as, "cured" for me is a loaded word.  NED fits me better.

By the way, 5 years NED is a pivital point and to be celebrated.  Continue with the monitoring!

Just my thoughts.....

Coloncancerblows's picture
Coloncancerblows
Posts: 296
Joined: Feb 2013

Randy,

Congrats on being 5 years NED!  I'm 6 months NED and like you, thought 5 years was the lucky number.  All we can do is live our life to the fullest and enjoy every day we have here.  That's what I'm going to do.  Kiss

suekell
Posts: 11
Joined: Mar 2014

I am stage V1 advanced and did not know it was even possible to get to NED ! That is pretty amazing and proves the prognosis given is not always right. I have mets from the colon to the peritoneum, stomach and a node in the chest area. Can i ask if you also had mets and where ? Thanks.

 

Sue x

mom_2_3's picture
mom_2_3
Posts: 939
Joined: Nov 2008

Congratulations!  Such great news.  I also evercise religiously and I hardly ever miss a day.  The study showing 27 mets exercise can help avoid recurrence is so important to me.  When I asked my oncologist many years ago what I could do to avoid recurrence she also said exercise.

Best wishes to you!

Amy

Helen321's picture
Helen321
Posts: 928
Joined: May 2012

Woooo hoooooo! 

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