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Is anybody out there with initial stage III or IV and 5 years NED now?

steven12
Posts: 52
Joined: Dec 2008

I am quite curious if possible to be NED continuously 5 years with initial stage III or IV, specially if the dx was with elevated CEA before the surgery. Thanks and best wishes to everybody,
Steven

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katienavs
Posts: 88
Joined: Nov 2006

Hi,
I was initially diagnosed with stage iv (mets in the liver) and a CEA of 249.7 This diagnosis was in June of 2006 and I've technically been NED since October 24, 2006 when I had my surgery. I had nine more rounds of folfox after the surgery but its been two years and almost three months of NED. It's not five but it's pretty good!
Katie

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KathiM
Posts: 8077
Joined: Aug 2005

....with no reoccurance....(well, I had another primary site cancer 6 months later, but it was a totally different cancer, so it doesn't count...lol!).

Hugs, Kathi

CherylHutch's picture
CherylHutch
Posts: 1399
Joined: Apr 2007

I can't say that I'm NED BUT... when I was diagnosed (Dec 2006), I was diagnosed as a Stage 3 (tumour had perforated the intestinal wall, 1 out of 17 lymph nodes tested positive). 15 months later, when my CEA had risen from a 1.5 to 18, a PET scan lit up for the right adrenal gland (above the right kidney) and 2 spots on the lung. This was the first PET scan I had and all previous CAT scans had been focused on the colon/intestine... so no one knows if the adrenal and lung were positive all along (in which case I would technically have been a Stage 4 in Dec 2006, or if the spread happened sometime between Dec 2006 and March 2008.

Either way, Stage 3 or Stage 4... 2+ years later, I'm still here and no worse for wear except for the chemo damaged feet. I have had my right adrenal gland surgically removed (June 2008) and will be going in for a lung Ablation to remove 2 tumours/lesions off my lung(s), leaving 5 tiny spots that are too small to ablate (2 of them may just be scar tissue from a bout of bronchial pneumonia when I was much younger).

So, no, I'm not NED... on the other hand, I look at it as a chronic disease that is currently under control and under treatment... and I plan on being here for a heck of a lot longer than 5 years... with this disease always under control ;)

Huggggggs,

Cheryl

PS: I am getting another CEA test done on Jan 23 and will see my onc on Jan 26 to get the results. If all goes according to MY plan , the CEA level will be around the 1.5 measure ;)

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MoonDragon
Posts: 194
Joined: Jun 2005

I'm seeing my oncologist on the 26th too. For some reason I'm jittery over this appointment. The last appointments I really wasn't worried or anxious over, but for some reason this one is getting to me. I'm coming up on almost a year since my last chemo and maybe that's why although my last 3 PET/CT's have been clear. Good luck on the 26th!!

Jorie

LOUSWIFT
Posts: 372
Joined: Aug 2006

I'm approaching three years (FEB 4)still NED. Funny seems like a long time ago until you approach another test then it seems like yesterday.

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Moesimo
Posts: 1080
Joined: Aug 2003

I was diagnosed with stage 3 rectal cancer on 3/17/03. My cea was low--3.4. but I was only given 5 fu and radiation preop and received only 4 out of 12 postop treatments of 5 fu and leukovorin and had too stop because I was too sick. That was the standard treatment then. I am doing well now and cherish every day that I am here. I just turned 52 on Tuesday.

Maureen

taraHK
Posts: 1961
Joined: Aug 2003

Happy Birthday Maureen! Woo hooo!

Tara

MoonDragon's picture
MoonDragon
Posts: 194
Joined: Jun 2005

Well that was a lousy way to celebrate St. Patrick's day!! :(

Congrats on being NED!!

Jorie

neon356
Posts: 137
Joined: Mar 2004

Diagnosed in '93 at age 53, stage III, 8 of 15 nodes positive. Had surgery, radiation and very aggressive chemo in that order. Been NED for 16 years now.... Carl

taraHK
Posts: 1961
Joined: Aug 2003

cool, Neon! Congrats and thanks for uping the celebration level!

Tara

MoonDragon's picture
MoonDragon
Posts: 194
Joined: Jun 2005

WOW, that's fantastic!! We need more of your type of stories!!

Jorie

ron50's picture
ron50
Posts: 1729
Joined: Nov 2001

I'm with neon dx in jan 98 with st3 colon 6/13 nodes affected...surgery and chemo reach 11 yrs ca free in two weeks. Cheers Ron. PS congrats neon.

taraHK
Posts: 1961
Joined: Aug 2003

I was diagnosed 6 years ago (almost exactly) -- Stage III. I've had a couple of recurrences but I am NED. And enjoying life! Best wishes to you, Steven

Tara

mom_2_3
Posts: 965
Joined: Nov 2008

Steven,

When I was first diagnoses I went meticulously through as many sites as I could looking for long-term survivors of Stage 4 specifically. I really needed to have know they were out there. I read it is important to have a model for your own recovery so I set out to find as many models as I could.

A good friend of ours (one that is watching my diet closely and doesn't allow me any sugar... :)) had his father diagnosed 6 years ago with ST4. His father went to MSKCC for chemo, became operable after being told he was not operable and has been 5 years NED. A partner at my husband's firm told my husband that his brother was diagnosed with ST4 11 years ago and is here today 10 years later having spent those 10 years NED. Our neighbor told me of her friend who has been 14 years NED since ST4 (chemo and surgery). So luckily there were people in our acquaintance circle that I can look to for support and to talk with and to provide optimism.

I also started a list in my treatment notebook. The title of the pages says "Survivors." So far I have a list of about 80 some names of people that are long-term survivors (my criteria was 2.5 years or more NED. Many on that list are more than 4 or 5 years. I have emailed with a number of those people and it gives me great hope for the future that I will see my kids get older. This is a great board but if you haven't found it yet Colonclub.com also has a great message board. There and here are my first stops with my morning tea.

StacyGleaso's picture
StacyGleaso
Posts: 1249
Joined: Mar 2003

I am over 7 yrs clear of stage 4 colon cancer with liver mets.

scouty is another good example. So is 2bhealed. So is Lisa Rose. So is kanort.

HAVE FAITH!!!!!!!!!

Hugs,

Stacy

steven12
Posts: 52
Joined: Dec 2008

Neon and Ron,
Could you remember your CEA levels after your dx's and before the surgery? That is very decisive for the ultimate outcome of this disease. Many sites are documenting that. I had an elevated CEA before the surgery. After that and 6 cycle of Folfox4 I was NED 2yrs, 3mts when had a recurrence 2yrs ago probably in lymph nodes, no distant organs affected and no remarkable progression detected on CT's either. Not so far at least. Since then I am not NED but trying to find a longer chemo regime which I could stand, suppress the CEA to a normal and wait to see if I will have a recurrence again. Best wishes to everybody,
Steven

polarprincess
Posts: 210
Joined: Aug 2008

what stage were you at dx? Stage 3 I assume, but which? a, b, or c and how many nodes positive? How elevated was your CEA? I like to use Sloan Memorial ketterings online prediction tool for recurrences, which they claim is more accurate than the statistics from ASCO.. if i enter 0.3 for CEA or the maximum level they have on there.. it only gives me a 4% difference in my 5 year overall disease free survival.. so maybe they have found the elevated CEA is not as important as they once thought, or maybe it just has to do with stage.. I am not sure. p.s. how come you only got 3 months of chemo?

steven12
Posts: 52
Joined: Dec 2008

Polarprincess,
My CEA was 50 before the surgery. I think you have misunderstood something about my chemo. My Folfox4 adjuvant therapy lasted 9 months. Two years ago when my CEA started to rise it took more then a year that the CT's and PET's showed something. The CEA in that periode went up to more then 300. So last year I had Xeliri for 3.5 months as much as I could stand. This was reducing the CEA to 10 but now is rising again. CT's still showing the same steady 1-2mm spots but no indication of any progression. Thanks and Best wishes,
Steven

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msccolon
Posts: 1956
Joined: Oct 2004

So your CEA was rising with no appreciative reason to point to in the scans. But the chemo dropped it from 300 to 10 and now that you're off chemo it's rising again. My CEA has continued to rise over the last year and we did chemo a year ago and it dropped but only 2.5 points (it was only at 14 at the time we decided to go back on chemo). It's now rising again and scans aren't showing anything that could justify the rise. However, i don't feel a drop of 2.5 points is enough to justify the ick that is chemo, so for now I'm just continuing with Avastin every 3 weeks and considering my options. Wondering if it's peritoneal implants... they tend to be many and tiny which don't show up on scans, and don't respond well to systemic chemo cause it has a hard time breaking the peritoneal barrier.
mary

ron50's picture
ron50
Posts: 1729
Joined: Nov 2001

Hi Steven,
My cea was checked at dx it was only 2.8 even with 6 lymph nodes involved and a tumour that my surgeon described as 'frightfully' aggressive. During treatment my cea ranged from 0.9 to 1.2. I had it checked 6 mos ago and it was under 0.5 ,virtually undetectable. All the best Ron.

steven12
Posts: 52
Joined: Dec 2008

Polarprincess,
I forgat to add I was dx'd stage IIIc, had 13 nodes out of 14 affected. Right after the surgery the CEA went to normal and stayed NED for 2yrs and 3mnts. I am counting the adjuvant therapy period also NED.
Msccolon,
Seems we are very much in similar situation. Dec. 15 last year I started a subject: "Treat the high CEA or wait?" exactly because the only objective changes what happening with me is the rising CEA. I am also very much aware to do much chemo but ultimately I would like to try, at least once, to bring the CEA down to normal, and then to see how long I could stay NED again. I am in the process now to decide about new chemo and maybe PICC type of Port and to try again with Folfox. But, contrary to my onc's wishes I would do the therapy only until the normal CEA level. Onc's wants to keep us on chemo as long as we can stand it. This simply doesn't make sense to me.
Best wishes, Steven

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neon356
Posts: 137
Joined: Mar 2004

Hi Steven, Carl again. When I was first diagnosed, also with a very large tumor that had me almost completely blocked, my CEA levels were very low. Throughout my treatment and for the past several years since my levels have never been consistent. They've gone from the low twos up to the mid teens. My Doc says that CEA's are not necessarily a good indicator for all people. I was also a smoker at the time and apparently that can mess with the test too.
I've never heard that CEA levels are any predictor of final outcome or course of the Beast. So like you'll find from many people here on the list, try not to dwell too much on the numbers, statistics, etc. No two cases are exactly the same and you can drive yourself nuts trying to figure out what your odds are, or how you're going to react to the chemo, radiation and the rest. Try to live in the present, and we're all here to help out and to share our own experiences when asked. Before you know it you'll be one of the old timers on the group helping out some poor scared-to-death newbie.

drtrudi
Posts: 1
Joined: Jan 2009

Hi there, Neon.... I was diagnosed with stage 4 sigmoid colon cancer April 1, 2008.... My preop CEA was non-detectable and my PET/CATscan showed no mets... Unfortunately, during surgery my surgeon found 1 to 2mm mets all along my peritoneum... The primary tumor had eaten away the colon wall and almost perforated and that is how the spread came about... I d have been on Folfuri since the end of May and since changing oncologists early November, I am now on avastin and camphosar (which is kicking my butt)... I am one of the newbies, y'all talk about... scared to death.... I am only 42 and no one will give me any long term prognosis, so I worry that I won't make it long... I have had septicemia from one PICC line and another bout from a passport in my arm.... I have had 2 weeks of pneumonia, blood transfusion and side effects so bad that I had a repeat colonoscopy because I was convinced of a tumor recurrence (test was normal).... Good luck and congratulations on your success... Trudi

CherylHutch's picture
CherylHutch
Posts: 1399
Joined: Apr 2007

Hey Trudi... welcome to the board! You've found the right place to come to, to ask questions and to get answers. Unfortunately, no one... patients or doctors alike can give you a long term prognosis, or really even a short term prognosis... the reason being, NO ONE KNOWS! If the doctors were to say you only have 6 months to live, then they will totally have egg on their face when you are still here 2 years from now... and if they say that you have a good 30 years left, the same egg on their face when you leave their office building and get hit by a bus. ;)

The only reality is... you are here now, you have been diagnosed with the beast, and now you have to try all that modern and ancient medicines have to offer to try and beat the beast into submission/remission. It might mean changing your lifestyle somewhat, or changing some of your beliefs to accept some you hadn't in the past or letting go of some that you were brought up with. It's a long journey, but one filled with ups, downs, highs, lows and you just have to keep on trucking down the paths that are thrown your way.

The one thing you want to really work on... get rid of the fear!! Get rid of the idea that you are going to die in the near future of this beast! None of us know when we are going to die but the last thing you want to is to surround yourself with constant thoughts of death. Ptooey!! Surround yourself with thoughts of life and living the good life. This is NOT easy to do... not after we have been given the shock of a lifetime, then the medical profession won't give any guarantees (we all want guarantees even though realistically we know there are no guarantees in life).

If you find yourself terrified all day to the point it is affecting your day to day functioning self, then go right back to your Dr. and tell him/her that you need help with the fear... and he/she can put you on anti-depressant/anti-anxiety meds... and may have to play around with the dosage until it's just right for you. We are all fighting the battle of a lifetime and you will need your senses about you... but most important, you need to get rid of the fear so you can make appropriate decisions in this fight.

Keep reading the topics on this forum. You will find that are a lot of us Stage IV cancer fighters... and we are still here, still fighting the battle, and plan on being around for a long, long time. And let's face it... doctors can tell us anything, but we want proof!! Well, the proof is here on these boards... there are many of us who are doing just fine, yet still battling the beast. And there are even many more who are Stage IV survivors who have been NED (no evidence of disease) for 10 or more years and have moved on so aren't posting anymore. We have a couple who still do, but it would be great to bring back a whole truckload of 10+ year survivors to show us all... it can and will happen for the rest of us too :)

Hugggggs,

Cheryl

pamness
Posts: 529
Joined: Nov 2007

My pre surgery CEA was 4.6 - I was stage IIIA 2 lymph nodes out of 19 positive - both of the positive nodes close to the colon. I had one malignantpolyp and nothing else.

I am only 18 months ned - since end of treatment and my CEA has bounced around.

I never heard about pre surgery CEA predicting outcome.

I hope your outcome is great.

Pam

CherylHutch's picture
CherylHutch
Posts: 1399
Joined: Apr 2007

Hey Steven,

Where did you hear or read that CEA levels prior to surgery are decisive in the outcome? I have pretty much heard the opposite... that CEA levels are only a monitoring tool and, even as a tool, don't work well with a lot of people. There is no such thing as a "normal" CEA reading since everyone's "norm" can be very different. Sometimes a change of just a point or two can mean cancer activity in one individual and in someone else, they can bounce from the single digits to the double digits and it means nothing. Not only that, CEA levels fluctuate so if you get a slightly elevated reading, the oncs don't get too excited until you get another reading in a month or so and only if it shows elevated again.

So, I'm just wondering where you are getting this info because if it is documented somewhere, I'd like to take a copy to my onc and ask her what gives?

Thanks!

Cheryl

polarprincess
Posts: 210
Joined: Aug 2008

thanks for the clarification on the chemo.. i must have read it wrong. Just to mention how i was talking about the memorial sloan calculator.. because they ask that as a question (what the preop CEA was), it evidently must have some meaning or they probably wouldn't ask for it, but it must depend on stage or more nodes or something to make a difference because like i said it only gave me 4% difference between the lowest and highest numbers, and 44 is the highest number it lets you put so evidently anything above that must not mean anything.
I went to mayo clinic for my treatment and surgery and they didn't even do a preop CEA so makes you wonder if they even believe in them as a useful tool. They kind of scoffed at PET scans as well and do not routinely recommend them. ( at least the team i had)

impactzone's picture
impactzone
Posts: 542
Joined: Aug 2006

Dx 9/06 lots of chemo, liver and lung surgeries but clear since 11/ 07... not much but I'll take the year. Good topic and congrats to all who have worked to get to this point. I still am so angry and frustrated at the randomness of this disease. I've gone to too many funerals and seen too many messages in my short time. A big thanks to all the caregivers out there who help everyone get through.
Chip

Lisa Rose's picture
Lisa Rose
Posts: 597
Joined: Mar 2003

Stage 3 rectal cancer, 10 positive lymph nodes.

I had my surgery March 20,2002 almost seven years now and still NED...

Alway,
Lisa Rose

polarprincess
Posts: 210
Joined: Aug 2008

Lisa Rose, I am curious how many cycles of chemo did you get, and have you had any long term effects from your radiation, particularly female related ones? I had radiation as well just recently and am still wondering how many cycles of chemo i will get, seems to be standard for 8 with radiation, but sometimes as many as 12 with several nodes involved. I had 1 node. thanks

lizbiz's picture
lizbiz
Posts: 121
Joined: Aug 2008

I'm curious to know...did anyone have venous invasion? I'm stage 3 with only one lymph node "mildly" involved yet the fact that there was venous invasion bumps up my chance of recurrence considerably. I'm just wondering if any survivors with multiple lymph nodes involved had evidence of venous invasion?

Thanks,
Elizabeth

Lisa Rose's picture
Lisa Rose
Posts: 597
Joined: Mar 2003

Hi polarprincess,

Here in Canada things are done slightly different in regards to treatment and schedules. However I had a total of 23 FU treatments and I wore a chemo pump during my radiation and that was 28 treatments. I never had any side effects from the radiation ( like burns), however when the radiation was complete it was instant menopause for me at age forty and that sucked. My Dr's suggested HRT to help out with all the menopause symptoms and I took it for one year in 2003. Today I am fine and enjoying life.

Wishing you all the best!

Lisa Rose

2bhealed's picture
2bhealed
Posts: 2085
Joined: Dec 2001

Hi Steven,

Stage III sigmoid colon cancer here with 2 out of 19 pos lymphs, and I am 7 years 5 months NED with no recurrences. I didn't do any chemo and am perfectly healthy. YEA! I did Chema instead (juice of the plant).

My tumor did not give off a CEA so I can't help you there though.

peace, emily the juice chick

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jillpls
Posts: 241
Joined: Mar 2008

Hi, have you been or were you taking any drugs for maintenance? I had reoccurance so I was put on folfiri for 13 cyclyes with Avastin. Now the spot in the lung and liver are so small they can't see them any more. So they put me on xeloda and avastin as a maintenance. Is anyone on a maintenance regime?

lisa42's picture
lisa42
Posts: 3661
Joined: Jul 2008

I'm not yet (I'm not done w/ the 2nd line chemo of Folfiri yet), but I will be on maintenance after I finish this- at least that's the plan I've been told & that it will also be Xeloda and Avastin. I was told this would be a minimum of 6 months and up to a year. Don't know beyond that! I'd also like to hear from someone who's already on this type of maintenance & for how long they took it, etc.

Lisa

chynabear's picture
chynabear
Posts: 483
Joined: Jul 2005

I was diagnosed 10/04 and have been NED since surgery... did complete the 6 months of "insurance" chemo. It is possible. Keep the faith.

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