Colon cancer returns only to lymph nodes

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PammA
Posts: 4
Joined: Sun Jan 05, 2014 2:42 am

Colon cancer returns only to lymph nodes

Postby PammA » Wed Sep 03, 2014 6:54 pm

I have been searching for someone in a position like mine. I had no lymph node involvement after surgery in 2010. Went through 6 months of folfox6. About a year ago,I started having ab pain. Got testing for infection etc and dr thought I had IBS. Well a couple months later was my 6 month check up at cancer center. My CEA levels had risen so went through all the testin, scans, biopsy to find it has metastisized only to lymph nodes from neck to pelvis. I am told this is better than it being in a major organ and not as difficult as I had imagined. I understand that I am not curable but I am manageable. I also got lucky with a "wild" KRAS which pits me in a position to get additional drugs that wont work for others. Like i said earlier, I just want to find someone like me who might want to chat.

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mstults
Posts: 1327
Joined: Fri Nov 30, 2012 11:23 am

Re: Colon cancer returns only to lymph nodes

Postby mstults » Wed Sep 03, 2014 10:40 pm

Is it possibke that this time it's lymphoma and not colon cancer?
Male Age 53. Dx CC with numerous liver mets 6/23/12. Colon res 6/24/12. Started folfox 7/24/12. Added avastin 8/27/12. CT 12/27/12 still showing shrink. Took 17 rounds of FOLFOX. Then 5-FU + Avastin. Switched to Irinotecan for 1 yr. CEA rose to >400. Switched to Vectibix 2/18/15. CEA decreasing. Scans show some growth in liver mets. Lung Mets stable to shrinking.

https://www.facebook.com/michael.stults2/about?ref=home_edit_profile&section=work

skypup
Posts: 2598
Joined: Mon Dec 17, 2012 12:12 pm

Re: Colon cancer returns only to lymph nodes

Postby skypup » Thu Sep 04, 2014 1:52 am

That was my scenario, too, for my first recurrence and then the next couple of years. Eventually my liver got involved as well. LN mets are indeed the path less traveled--there have been a few of us, not sure who besides me is left, sadly. The good news is that LN mets seem fairly indolent. You can live a long time without them causing any real trouble. The bad news is that I don't know of a case where anyone was treated surgically with success, the only road to a cure. (Hope that isn't too hard to read, but I sense you know that already.) if you search the term "olymphian" you will find posts from people with LN mets only. Feel free to PM me if you want, and I'd be glad to talk on the phone as well.

Peabody5422
Posts: 334
Joined: Fri Dec 09, 2011 10:21 am
Facebook Username: debbie.whitaker

Re: Colon cancer returns only to lymph nodes

Postby Peabody5422 » Thu Sep 04, 2014 5:08 pm

Your dx is the same as mine. None at initial but a "rare" cancer so dx was t1 N1c MX. Now I have Lymp. Not in any organ but 1 on each side of the mid arotic and 1 on T2 verebrae. I was told my Onoc I had 2 - 2 1/2 yrs with chemo every 2 weeks (Oxiplatium, As. and 5fu) Made me sick so they have reduced it 4 weeks in a row. BUT I had a CT scan done 2 weeks ago and it showed all three cancers decreasing in size. Change in there. The chemo is making me rediculously ill for almost 10 days which gives me 3 to 4 days of just feeling bad. I cannot touch anything cold. The 1st treatment with the cold side effect was like and out of body experience. Drinking is almost impossible. I hate the flavor of every thing. Meats are just as out. BUT i am still here. I am working and playing and everything else. I refused to lay down and stop living. I hope i just keel over one day!
DX: RC 11/11 T1 N1c MX
Surgery: LAR 12/23/11
Rad & Xeloda: 1/12 - 4/12
Clean CT: 4/12
Reoccur: Lymp 4/14 4 new locations. 2 Aortic, 2 locations Rectum
Chemo to start: 6/14, OXI, Advastin, 5FU
10/14: One tumor left - on Avastin only
Surgeries: 4/15, 7/15 and 8/15 :last tumor w/Illeostomy then Ostomy
NED by 7/15 Surgery

Peabody5422
Posts: 334
Joined: Fri Dec 09, 2011 10:21 am
Facebook Username: debbie.whitaker

Re: Colon cancer returns only to lymph nodes

Postby Peabody5422 » Thu Sep 04, 2014 5:13 pm

Sorry - but even in Lymp system they still say it is Colon Cancer.
DX: RC 11/11 T1 N1c MX
Surgery: LAR 12/23/11
Rad & Xeloda: 1/12 - 4/12
Clean CT: 4/12
Reoccur: Lymp 4/14 4 new locations. 2 Aortic, 2 locations Rectum
Chemo to start: 6/14, OXI, Advastin, 5FU
10/14: One tumor left - on Avastin only
Surgeries: 4/15, 7/15 and 8/15 :last tumor w/Illeostomy then Ostomy
NED by 7/15 Surgery

PammA
Posts: 4
Joined: Sun Jan 05, 2014 2:42 am

Re: Colon cancer returns only to lymph nodes

Postby PammA » Thu Sep 04, 2014 5:41 pm

Finally! First of all it is not lymphoma which was one of my initial questions. I appreciate all of you taking the time to reply. I do know surgery is not an option. I started out on Avastin and Xeloda. The Avastin sent me to the hospital twice with HPB. Since the only way to control it was to have me on 4 BP meds, they took me off it. So then it was irinotecan and erbitux. As I started the second cocktail, my CEA levels had gone down. But as I got close to the end of the routine, I was becoming sicker and it was time for a CT and PET scan. They showed more LN involved and CEA was up. The theory is that while I couldn't take the Avastin, that it was working. So the last six months have kind of been a waste of time although I understand the value in eliminating what doesn't work. I am now on the FOLFOX cocktail with a med like erbitux (the kind only us wild people can take). Not looking forward to the effects of the oxy. I do remember it from my initial chemo 4 years ago. Also developed thrush in my mouth so eating is becoming more challenging. With your help I will figure this out!

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pollo65
Posts: 1564
Joined: Thu May 20, 2010 3:11 pm
Facebook Username: pollo2
Location: central valley, calif

Re: Colon cancer returns only to lymph nodes

Postby pollo65 » Fri Sep 05, 2014 7:12 am

I have had recurrence to only lymph nodes and at this point I am five and a half years from DX. I was on folfox with avastin and had à hypertensive episode I remain on b/p meds. I have had long remissions and massive amounts of folfox,cpt11, xeloda(which left me with pancreatitis) and avastin with each one. I was told from the start that I was not a candidate for surgery. Here I am going on 6 years. Same old lymph nodes showed up again in scan last week but are growing slowly so am putting off chemo for another three months. I guess it all comes down to a waiting game. Good luck and pm me if you want it seems that we are in the same boat.
Pollo 65
CC 1/6/09
r. hemi-colectomy 1/7/09
32Ln biopsied, 28 positive
met to aorta
chemo 12 rounds
done 9/09 3 scans clear
1/11 1 met to aorta
micro cluster to peritoneum
4/11 / 9/11 scan clear
4/12 scan clear
10/12 scan clear
Iri+avastin
chemo break

Elizmed
Posts: 62
Joined: Sat Jun 14, 2014 6:36 pm
Location: Georgia

Re: Colon cancer returns only to lymph nodes

Postby Elizmed » Fri Sep 05, 2014 11:20 am

I also have LN affected from neck to middle of my chest. Currently on Folfori with vectibix (I'm KRAS wild).
Onc seems very hopeful this will work. 2nd opinion onc suggested radiation on lymph nodes, haven't discussed with primary onc.

As of now no major organs have mets, yet have tumor growing along side what's left of my left kidney.
57 F DX 8/13 Colon/PancreaticIV
9/13- Surgery remove spleen,partial pancreas tail,partial left kidney
10/13- Gemzar+Abraxane
11/13- Avastin+FOLFOX 6
3/14- Hysterectomy
4/14- Avastin Xeloda
8/14- Folfiri-Vectibix
10/14-Gemzar Abanxane


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