I have distant lymph node spread only with no organ involvement

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Shân
Posts: 14
Joined: Wed Sep 30, 2015 6:50 pm
Location: Old Greenwich CT

I have distant lymph node spread only with no organ involvement

Postby Shân » Sun Jan 31, 2016 9:54 am

Does anyone else have distant lymph node metastasis only with no organ involvement?
Need to decide on next course of treatment.
Avastin again, since it gave me 5 months NED?
Erbitux, Cyramza, Stivargo?
Looked at new trial Pembrolizumab and radiation but my disease is not measurable enough yet!!
Would love to hear from anyone who has been in a similar situation.
Dx 3/14. Stage 111b. Aged 51 Mother of 4
3/14 Sigmoidectomy (6 positve lymph nodes out of 15)
12 rounds of oxaliplaton, 5 F-U and leucovorin
9/14 PEP scan tumor in superaclavicular lymph node
Stage IV
10/14 Radiation,
1/15 PEP activity in the lymph nodes in abdomen.
12 rounds irinotecan and avastin
4/15 NED
9/15 PEP activity in the lymph nodes in sternum
10/15 Radiation SBRT
1/16 PEP activity in another 2 superaclavicular lymph nodes
2/16 irinotecan and avastin
3/16 NED but CEA 6.1

Lee
Posts: 6095
Joined: Sun Apr 16, 2006 4:09 pm

Re: I have distant lymph node spread only with no organ involvement

Postby Lee » Sun Jan 31, 2016 6:49 pm

Welcome, sorry for the reason you are here.

Yes there have been a few people here who have distant lymph node spread without organ involvement. Have your had a PET scan recently, if no, may want to consider?

Also if you have not already done so, get a 2nd opinion at a major cancer treatment center. They are on the leading edge of tomorrow standard care. If not at a major treatment center, getting a 2nd or 3rd opinion with other Onc would be a good idea for peace of mind in making the right decision.

All the best,

Lee
rectal cancer - April 2004
46 yrs old at diagnoses
stage III C - 6/13 lymph positive
radiation - 6 weeks
surgery - August 2004/hernia repair 2014
permanent colostomy
chemo - FOLFOX
NED - 16 years and counting!

RobDontGiveUp
Posts: 30
Joined: Mon Jul 06, 2015 9:17 pm

Re: I have distant lymph node spread only with no organ involvement

Postby RobDontGiveUp » Sun Jan 31, 2016 8:13 pm

I fit this to a T. Here's my story

Diagnoes Stage IV in june 2015. Mass in cecum big enough that camera couldn't pass through. CT guided Biopsy proved cancer had spread to lymph nodes in the back. PET scan also showed enlarged lymph nodes near colon, in my chest and on left side of my neck.

Foflfox with Vectibix for six months. Pet scan showed main tumor was completely gone and all the lymph nodes had significantly shrunk but theres still bigger than normal meaning cancer is still present. Colonoscopy confirmed there was no longer a tumor in the cecum.

Am now on Xeloda and Avastin. I pushed my doctor on what my chances of being alive in 5 years are and he said "maybe a little better than 50-50."
35 M dx Stage IVA colon cancer 7/15 w/
mets to retroperitoneal lymph nodes, suspected neck and para aortic as well
CAA 19-9 <3
12 rounds of FOLFOX W Vectibix 7/15
partial remission with shrinkage of tumor and ln's. Switch to XelodaAvastin 12/15
complete remission NED 6/16 Still on XelodaAvastin
Cancer returns in ln's Start Folfiri Vectibix 10/16
Shrinkage in ln's Folfiri vectibix 2/17
Tumor returns to cecum but ln's remain stable, right hemi 7/17
Folfiri Vectibix 8/17
lung mets 2 nods 2.5cm Stivarga 6/18

Felicitym23
Posts: 32
Joined: Sun Jan 24, 2016 2:37 am
Facebook Username: Felicity Malyszko

Re: I have distant lymph node spread only with no organ involvement

Postby Felicitym23 » Sun Jan 31, 2016 8:23 pm

Hi there,

I initially had a tumour in my bowel which was removed. Stage 3C.

Then at a Catscan they found inflammed lymph nodes in my abdomen. Was told probably due to operaton.
Ended up back in Hospital a month later and had another CT scan that found inflammed lymph nodes in my neck. Pet Scan and bi opsy confimed that cancer was in my lymph nodes . Now Stage 4.

I am only new to this. Found out last December. I am doing chemo with Padntumumab, Oxy, Leucovorin, and Fluorouracil.

I have been told this well change soon and also somewhere done the track radiation.

I am still at the stage of trying to process being told I am Stage 4. I feel so good when I am not doing chemo. It feels so unfair.
47yrs and mother to a 12 year child with autism
Cancer confirmed 9/23/15
Ext right hemicolectomy 10/13/15
35 Lymph nodes & 6 cancer told Stage 3C.
Nov 15 Oxy, Leucovorin, Flurourcil
CT and PET Scan told that cancer was now in abdo & neck lymph nodes.
STAGE 4 told two days before Christmas 2015.
Oxy, Leucovorin, Flurourcil & Panitumumab
MARCH 2016 NED - currently in remission. Stage 4.
After 3 sessions of Vectibux.
PET & CT SCAN July 16 - Still NED but still on chemo and Vectibix.

Willow.NZ
Posts: 176
Joined: Sun Mar 08, 2015 3:05 am

Re: I have distant lymph node spread only with no organ involvement

Postby Willow.NZ » Mon Feb 01, 2016 4:53 am

Hi,

Welcome. If you search the term Olymphian you will see posts from ppl with lymph only spread.

My Dad was diagnosed after discovering enlarged lymph node on neck...see signature. We are in
NZ. He has been on Folfiri since diagnosis (except for his resection of tumour as scar tissue was causing concern for blockage). He had a huge amount of spread to Lymph nodes, no organs. Prognosis was 12 months at diagnosis.

He is doing well and all nodes within normal size..last scans have showed some peritoneal 'haziness' & tomorow we get results from scan from last week to see plan from here. He feels like body would love break but also knows the chemo keeping things at bay so worried to stop...

He was told that cure was not an
Option and long term chemo the way. He has fortunately responded well & who knows, just hope to keep defying the odds.
Dad diagnosed Sept 14 Stage IV. Age 57yrs. Transverse colon - spread to Retroperitoneal, Mesenteric & Supraclavicular lymph nodes. Folfiri commenced Sept 14.
April 15 - Bowel resection
August 15, stable scan
Feb 16 - No signs of cancer on scan...stop chemo & scan in 3 month
Scan April 16, Crazy growth to stomach, lymph nodes & multiple mets to liver. Commencing Folfox.
August: chemo not working. Stopped treatment.
September 3rd 2016 peacefully left this earth.

User avatar
tchan8888
Posts: 208
Joined: Mon Mar 25, 2013 8:41 pm
Location: San Francisco Bay Area

Re: I have distant lymph node spread only with no organ involvement

Postby tchan8888 » Mon Feb 01, 2016 3:18 pm

I have the same condition. Multiple distant
LN tumors in neck, abdomen, and underarm.

First Line: FOLFIRI 28x
Second Line: FOLFOX and Avastin 8x, but significant neuropathy
Current: Clinical trial for pembrozilumab 3 treatments so far

Blessings,

Tom
Tom, 49 now
12/12 Right Hemicolectomy 2X (29 days in hospital)
12/12 Stage IV: multiple distant LN; no organs
20X: FOLFIRI (stopped working)
8X: 5FU
8X: FOLFOX and Avastin
2016: Clinical trial pembrozilumab MSI high

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dianetavegia
Posts: 2724
Joined: Sat May 16, 2009 8:47 pm
Facebook Username: Diane Weldy Tavegia
Location: Villa Rica, Georgia

Re: I have distant lymph node spread only with no organ involvement

Postby dianetavegia » Mon Feb 01, 2016 3:44 pm

Even two years ago, I'd only heard of two people with Lymph only/ no major organs.

I wish I knew something more to say, other than I'm sorry.
Stage III cc surgery 1/7/09. 12 tx FOLFOX
Stage IV PET = 1.5cm liver met. HR 4/11/12

11 years since dx and 7 3/4 years post liver resection.
Pronounced CURED and discharged by onc

“O Lord my God, I cried out to You, And You healed me.” Psalms 30:2

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Shân
Posts: 14
Joined: Wed Sep 30, 2015 6:50 pm
Location: Old Greenwich CT

Re: I have distant lymph node spread only with no organ involvement

Postby Shân » Tue Feb 02, 2016 4:14 pm

Hi All,

I'm new to this too so not entirely sure how to reply correctly to you all, but here's goes!

Thank you Lee, and dianetavegia I am immensely grateful for you who continue to post now that you are NED, you are such inspiration and give me so much hope.

I started chemo again today, Avastin and Irinotecan, planned for 4 sessions to deal with these 2 pesky lymph nodes, CEA was up to 5.77 and biopsy proved positive, so treatment is necessary.

I am very exited about the future of colon cancer cure by way of immunotherapy and wish you all the very best Tom tchan8888 and look forward to hearing successful results which I know are out there.

Robdontgiveup, don’t, from what I can understand incidence of lymph node metastasis is extremely rare but with such new and promising treatments in the pipeline, there is every reason for hope and confience in long term survival. I do believe for us all, your dadWillow.NZ Felicitym23 that cure is a very real option.

I do an awful lot of reading on line, maybe too much searching with subjects like 'long term survival for stage 4 colon cancer with distant lymph node metastasis', but there is some good news out there!
Dx 3/14. Stage 111b. Aged 51 Mother of 4
3/14 Sigmoidectomy (6 positve lymph nodes out of 15)
12 rounds of oxaliplaton, 5 F-U and leucovorin
9/14 PEP scan tumor in superaclavicular lymph node
Stage IV
10/14 Radiation,
1/15 PEP activity in the lymph nodes in abdomen.
12 rounds irinotecan and avastin
4/15 NED
9/15 PEP activity in the lymph nodes in sternum
10/15 Radiation SBRT
1/16 PEP activity in another 2 superaclavicular lymph nodes
2/16 irinotecan and avastin
3/16 NED but CEA 6.1

Willow.NZ
Posts: 176
Joined: Sun Mar 08, 2015 3:05 am

Re: I have distant lymph node spread only with no organ involvement

Postby Willow.NZ » Tue Feb 02, 2016 7:14 pm

We got great news this week...no visible cancer at this point. This gives us real hope. We are realistic & will be nervous for next scan in 3 months after stopping chemo now...but looking back to 18 months ago..things couldn't be better right now.
Dad diagnosed Sept 14 Stage IV. Age 57yrs. Transverse colon - spread to Retroperitoneal, Mesenteric & Supraclavicular lymph nodes. Folfiri commenced Sept 14.
April 15 - Bowel resection
August 15, stable scan
Feb 16 - No signs of cancer on scan...stop chemo & scan in 3 month
Scan April 16, Crazy growth to stomach, lymph nodes & multiple mets to liver. Commencing Folfox.
August: chemo not working. Stopped treatment.
September 3rd 2016 peacefully left this earth.

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Shân
Posts: 14
Joined: Wed Sep 30, 2015 6:50 pm
Location: Old Greenwich CT

Re: I have distant lymph node spread only with no organ involvement

Postby Shân » Wed Feb 03, 2016 9:43 am

That is fabulous news, so happy for you, your Dad and family!
Dx 3/14. Stage 111b. Aged 51 Mother of 4
3/14 Sigmoidectomy (6 positve lymph nodes out of 15)
12 rounds of oxaliplaton, 5 F-U and leucovorin
9/14 PEP scan tumor in superaclavicular lymph node
Stage IV
10/14 Radiation,
1/15 PEP activity in the lymph nodes in abdomen.
12 rounds irinotecan and avastin
4/15 NED
9/15 PEP activity in the lymph nodes in sternum
10/15 Radiation SBRT
1/16 PEP activity in another 2 superaclavicular lymph nodes
2/16 irinotecan and avastin
3/16 NED but CEA 6.1

Felicitym23
Posts: 32
Joined: Sun Jan 24, 2016 2:37 am
Facebook Username: Felicity Malyszko

Re: I have distant lymph node spread only with no organ involvement

Postby Felicitym23 » Wed Feb 03, 2016 4:23 pm

WillowNZ that is wonderful news to hear about your Dad.

I hadn't realised that it was an uncommon thing to have cancer in the lymph nodes. I just took it as part and parcel.

My Dr said he doesn't go on CEA blood results and now that he knows I check. The have been removed from my blood results. Mine went .9 to 1. in a month so its rising.

I feel so well when the chemo has worn off for those few days before I hit the next round. After being misdiagonsed by my GP for over a year. To not feel sick from chemo or the pain I was in before hand. You would never know that I have "cancer". I seriously sucks.

I believe in my heart that that a cure is coming. I hope that it is in my lifetime.

My Dr has told me that we are talking years not months. And he will be honest with me when the time comes that we have done everything, and my time is limited.

Until then I have to believe I can beat this beast. There are more and more of us under 50's that are doing it.
47yrs and mother to a 12 year child with autism
Cancer confirmed 9/23/15
Ext right hemicolectomy 10/13/15
35 Lymph nodes & 6 cancer told Stage 3C.
Nov 15 Oxy, Leucovorin, Flurourcil
CT and PET Scan told that cancer was now in abdo & neck lymph nodes.
STAGE 4 told two days before Christmas 2015.
Oxy, Leucovorin, Flurourcil & Panitumumab
MARCH 2016 NED - currently in remission. Stage 4.
After 3 sessions of Vectibux.
PET & CT SCAN July 16 - Still NED but still on chemo and Vectibix.

Felicitym23
Posts: 32
Joined: Sun Jan 24, 2016 2:37 am
Facebook Username: Felicity Malyszko

Re: I have distant lymph node spread only with no organ involvement

Postby Felicitym23 » Thu Feb 04, 2016 1:46 am

I didn't realise having this was rare.

I thought it must have been the normal. Kill it off in the main area by surgery but we missed it by a split second and it spread.

I have been told by my Dr to stop googling...... And to trust him..... But its my life.... I hate not having any control on killing this cancer.

:D
47yrs and mother to a 12 year child with autism
Cancer confirmed 9/23/15
Ext right hemicolectomy 10/13/15
35 Lymph nodes & 6 cancer told Stage 3C.
Nov 15 Oxy, Leucovorin, Flurourcil
CT and PET Scan told that cancer was now in abdo & neck lymph nodes.
STAGE 4 told two days before Christmas 2015.
Oxy, Leucovorin, Flurourcil & Panitumumab
MARCH 2016 NED - currently in remission. Stage 4.
After 3 sessions of Vectibux.
PET & CT SCAN July 16 - Still NED but still on chemo and Vectibix.

Willow.NZ
Posts: 176
Joined: Sun Mar 08, 2015 3:05 am

Re: I have distant lymph node spread only with no organ involvement

Postby Willow.NZ » Thu Feb 04, 2016 3:56 am

I remember when Dad kept saying his goal was to be in 'remission' & I would go along with it to keep his spirits up, but until recently thought this could never be. I know it's early days but we need to keep believing it. He enjoys taking my son on big walks. I remember crying when he was talking about the Tongariro crossing walk he wants to do with him in a few years...but I truely believe now that they will do it. At this stage keep hoping & believing you will be one of those inspiring cases to defy the odds, at this point that is a very real possibility. I'm all for being realistic & accepting a situation but its natural to hope for that miracle...& they can happen.
Dad diagnosed Sept 14 Stage IV. Age 57yrs. Transverse colon - spread to Retroperitoneal, Mesenteric & Supraclavicular lymph nodes. Folfiri commenced Sept 14.
April 15 - Bowel resection
August 15, stable scan
Feb 16 - No signs of cancer on scan...stop chemo & scan in 3 month
Scan April 16, Crazy growth to stomach, lymph nodes & multiple mets to liver. Commencing Folfox.
August: chemo not working. Stopped treatment.
September 3rd 2016 peacefully left this earth.

DarknessEmbraced
Posts: 3486
Joined: Sat Nov 01, 2014 4:54 pm
Facebook Username: Riann Fletcher
Location: New Brunswick, Canada

Re: I have distant lymph node spread only with no organ involvement

Postby DarknessEmbraced » Thu Feb 04, 2016 8:45 am

Wonderful news about your Dad WillowNZ! :D
Diagnosed 10/28/14, age 36
Colon Resection 11/20/14, LAR (no illeo)
Stage 2a colon cancer, T3NOMO
Lymph-vascular invasion undetermined
0/22 lymph nodes
No chemo, no radiation
Clear Colonoscopy 04/29/15
NED 10/20/15
Ischemic Colitis 01/21/16
NED 11/10/16
CT Scan moved up due to high CEA 08/21/17
NED 09/25/17
NED 12/21/18
Clear colonoscopy 09/23/19
Clear 5 year scans 11/21/19- Considered cured! :)


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