Is anybody out there with initial stage III or IV and 5 years NED now?
Steven
Comments
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over 2 yrs
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!
Katie0 -
This comment has been removed by the Moderatorkatienavs said:over 2 yrs
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!
Katie0 -
Mine is a little different...
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 0 -
stage 3 and 5 years NED
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.
Maureen0 -
Happy Birthday!Moesimo said:stage 3 and 5 years NED
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
Happy Birthday Maureen! Woo hooo!
Tara0 -
cool!neon356 said:Diagnosed in '93 at age 53,
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
cool, Neon! Congrats and thanks for uping the celebration level!
Tara0 -
My List
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.0 -
Yep
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,
Stacy0 -
Wow, what a response !StacyGleaso said:Yep
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
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,
Steven0 -
stagesteven12 said:Wow, what a response !
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
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?0 -
CEA before surgerypolarprincess said:stage
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?
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,
Steven0 -
interestingsteven12 said:CEA before surgery
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
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.
mary0 -
ceasteven12 said:Wow, what a response !
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
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.0 -
CEA rising, no other changeron50 said:cea
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.
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, Steven0
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