stage IV with multiple lymph node involvement

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nick49
Posts: 89
Joined: Sat Jul 19, 2014 9:18 am
Location: UK

stage IV with multiple lymph node involvement

Postby nick49 » Wed Oct 22, 2014 9:52 am

Hi to all,

I was wondering if there are many of you that are in a similar situation as myself. I was diagnosed 14 months ago, stage 4, multiple lymph nodes, incurable.

No options for radiotherapy and or any type of surgery due to multiple lymph node involvement.

My chemo so far has been almost constant and so far has worked in keeping my tumour in check and shrinking my nodes.
Most days I feel OK, yes for me the chemo has been and continues to be tough. I've come to terms a long time ago with the fact that I'm incurable but it would be nice to hear from others in my situation.
Maybe I'm just having a bit of a down day!!!

I do draw inspiration from this site and I wish you all the best in your journeys.
Nick
Diagnosed Stage IV Colon Cancer Aug 2013
Metastatic adenocarcinoma of ascending colon.
Distant Lymph Nodes
49. Male.
Chemo - August 2013 for 10 cycles.
Kras Mutation.
July 2014 - Started Zaltrap/Folfiri - 8 cycles completed.
http://www.nickjparry.co.uk

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

Re: stage IV with multiple lymph node involvement

Postby skypup » Wed Oct 22, 2014 10:28 am

That was my situation, too, for several years, though eventually my liver became involved. Good news about the LN mets is that from the few of us on the board with LN-only mets, it seems to be an indolent path for the cancer to take. Everyone I can think of got some good symptom-free years and periods of chemo breaks. You might talk to your onc about taking a chemo vacation if the side effects are getting tough.

If you do a search on the term "olymphian" here on the site, you will find posts from others like us. Be forewarned, though, most of those members have passed on.

Feel free to PM me if I can be of help.

VikingShips
Posts: 42
Joined: Tue Sep 09, 2014 12:29 pm

Re: stage IV with multiple lymph node involvement

Postby VikingShips » Wed Oct 22, 2014 1:11 pm

The biggest risk with any LN involvement is it a prime way to spread to other organs. Though it sounds like you are keeping them in check.
Caregiver to father 68
DX 11/10 IIIA 1 Lymph Node
12/10 - resection
6 months FOLFOX
NED
6/12 - Mets to liver, PC. Stage IV
Successful resection, good margins.
6 months Chemo
8/14 - Mets to liver, PC return, Spleen met.
Hope in the beginning, now?

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Cherie
Posts: 590
Joined: Fri Jul 12, 2013 11:20 am
Facebook Username: cherie
Location: New Zealand

Re: stage IV with multiple lymph node involvement

Postby Cherie » Wed Oct 22, 2014 5:51 pm

Nick there are a lot of new treatments. If you are doing chemo I high suggest looking into ADAPT which is basically adding Celebrex to the chemo. It has shown some positive early results and is now going through trials. If anything it could buy yourself some serious time. The Celebrex seems to make the chemo a lot more affective.
I definitely would be taking at least Celebrex, if you don't have a contraindication for that (like heart problems, or tendency to strokes), during the next year. It's usually prescribed for arthritis and joint pain, so if you insist you have that, maybe...
This is old but, if you have the chance, hear this interview to Lin http://www.patientpower.info/audio/meta ... 0/player/0 (or read the transcript: http://cdn.patientpower.info/p2docs/tra ... 091008.pdf ), if you have the chance :)
36Yo F
2000 UC
2013 Stage 4 CC 15/126 LN spread to the omentum
June Collectomy all visible cancer removed
July Folfox + Avastin
2/14 clean scan
8/14 Ileo-anal pouch surgery still NED
1/15 Emergency illeostomy spread to peritoneum and small bowel

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

Re: stage IV with multiple lymph node involvement

Postby mstults » Wed Oct 22, 2014 5:59 pm

Don't take it if your platelets are low. The prescribing Dr should be aware if they are low but you need to watch as well.
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

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meatie
Posts: 418
Joined: Wed Aug 20, 2014 8:13 am
Location: San Jose, CA

Re: stage IV with multiple lymph node involvement

Postby meatie » Wed Oct 22, 2014 6:09 pm

@nick49

Sorry if you already gave this information. But about many nodes were positive? 10, 50, 100+?
Mother DX @59 8/14
cln+lvr res 9/14, stage 4
FOLOX+Avs 12-rd 10/14 to 4/15
Reoccurrence, KRAS mutant 11/15
Folfiri 18-rds 11/15-8/16
FOLFIRI with Ramicirumab 28-rds 8/17-9/18
Regorafenib 10/18-10/19
Lonsurf 10/19 onward
Folfox rechallenge 05/20
Regonivo (Opdivo+Stivarga) 08/20

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

Re: stage IV with multiple lymph node involvement

Postby pollo65 » Thu Oct 23, 2014 9:29 pm

Nick,
I have had multiple lymph nodes involvement and much chemo but I have had a2 year remission and a couple of 1 year remission. Though I still have involvement at this point the cancer is very slow growing at this point and I have been of chemo for 11 months. I was told initially that I would be on chemo with only short breaks but after 2 clear scans I told my first of that I was staying off chemo until something showed up. That was the beginning of my 2 year remission and finding a new oncologist.
I consider myself incredibility blessed to have close to six years since diagnosis.
Pm me if you have more questions.
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

Girl111
Posts: 234
Joined: Fri Dec 06, 2013 4:43 pm

Re: stage IV with multiple lymph node involvement

Postby Girl111 » Thu Oct 23, 2014 9:49 pm

My dad had 1 met to node and still they want to do chemo first and no radiation etc yet

Tina x
Dad diagnosed stage 3 cc nov 13
Bowel resection march 14
Started xeloda
1 liver met and 1 node ( small)
Started irinotecan - failed
Poss nano knife now and oxyplatin
Hope the chem works !

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Cherie
Posts: 590
Joined: Fri Jul 12, 2013 11:20 am
Facebook Username: cherie
Location: New Zealand

Re: stage IV with multiple lymph node involvement

Postby Cherie » Fri Oct 24, 2014 2:11 am

At what point does a positive LN become a met?
36Yo F
2000 UC
2013 Stage 4 CC 15/126 LN spread to the omentum
June Collectomy all visible cancer removed
July Folfox + Avastin
2/14 clean scan
8/14 Ileo-anal pouch surgery still NED
1/15 Emergency illeostomy spread to peritoneum and small bowel

nick49
Posts: 89
Joined: Sat Jul 19, 2014 9:18 am
Location: UK

Re: stage IV with multiple lymph node involvement

Postby nick49 » Fri Oct 24, 2014 2:16 am

Thanks to all your responses!
I'm not 100 percent sure of my number of affected lymph nodes, all it know is that they are in my neck, chest, groin, armpits, stomach...most were the size of a quarter...and I didn't even feel them!
At the moment they all shrunk....I'm trying to get through two to three more cycles, then the dreaded scan...and hopefully a chemo break!
Thinking positive!
Good luck to all on here.
Nick
Diagnosed Stage IV Colon Cancer Aug 2013
Metastatic adenocarcinoma of ascending colon.
Distant Lymph Nodes
49. Male.
Chemo - August 2013 for 10 cycles.
Kras Mutation.
July 2014 - Started Zaltrap/Folfiri - 8 cycles completed.
http://www.nickjparry.co.uk


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