Sigmoid + Distant Lymph Nodes

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Siti
Posts: 103
Joined: Thu Aug 01, 2019 10:58 am

Sigmoid + Distant Lymph Nodes

Postby Siti » Fri Aug 16, 2019 5:08 am

Hey everyone,

I would love to hear your input with regards to this. My husband went for colon resection about 4 weeks ago and has recovered very well. PET-CT scan shows activity on 5 distant lymph nodes (Para Aorta up to Supraclavicular) and the doctors have concluded it's infected.

We just had a meeting with our medical oncologist and he has proposed 2 treatment plans for us to choose:

1-- Watch and wait approach. Essentially he's suggesting we don't do any chemo and wait for another 2 months for CT or till the nodes grow bigger/spread before we start anything. There are 2 benefits to this, 1- my husband will have a good quality of life, and 2- if the nodes grow bigger, then it's easier to track if the chemo is working. I find this suggestion extremely risky because first of all, my husband's tumour is Grade 3 (poorly differentiated) and 30/31 nodes on his pathology came back positive. I wonder why is this was even proposed in the first place?

2-- We start chemo, but not until another 2-3 weeks (so 6-7 weeks after surgery). CAPOX + Avastin for 6 cycles with CT scan scheduled every 2 months. I understand Avastin shouldn't be taken any sooner than 6 weeks after surgery because it might slower the healing process but I am not certain why we can't start 1 cycle of chemo first and add Avastin later on. In his opinion, it's better wait another 2 weeks to start the CAPOX + Avastin than to have Avastin added later.

I am really worried and confused, because I know things move extremely slowly in the Netherlands when it comes to healthcare, largely due to budget constraints and resources. There are no private options in the country. I don't want my husband to be a victim of the system.

Looking forwards to your thoughts.

Thank you!!
Siti
Wife of DH (54) DX on 5/7/19
CEA value: 1.2
T loc: Sigmoid
T type: Adenocarcinoma
T grade: G3
Pos LNs: 30/31
Wild Type for KRAS, NRAS and BRAF
19/7/19 PET-CT Scan: Distant lymph nodes (para-aorta, neck & hip), est. size 0.5-1.5cm.
22/7/19 Surgery: Laparoscopic Colon Resection
26/8/19 Chemo: CAPEOX + Avastin x 9
6/11/19 CT Scan after 3rd cycle, all nodes have shrunk! Yay!!

Rock_Robster
Posts: 399
Joined: Thu Oct 25, 2018 5:27 am
Location: Melbourne, Australia

Re: Sigmoid + Distant Lymph Nodes

Postby Rock_Robster » Fri Aug 16, 2019 9:03 am

Hi Siti,

Sorry to hear about your reason for being here; it sounds like you’re well-informed though and great that he recovered from surgery well.

I don’t have a strong view on the distant LNs as this isn’t really my area sorry, but others will. That said, I’ve never heard of ‘watch and wait’ for LNs that lit up on a PET, and indeed under the circumstances I would be leaning toward chemo now.

I don’t see any reason not to start chemo after 4 weeks, then add Avastin after 6. I restarted FOLFOX (no Avastin) 3 weeks after my rectal resection.

I just wanted to add that I was also diagnosed in the Netherlands (The Hague), and although I agree the system is slow and bureaucratic, I did find the treatment to be thorough and the protocol offered reasonably appropriate (although it did differ from what I now know to be the US / Oz approach).

Best of luck,
Rob
Male 37; Melbourne, Australia
10/2018 Dx 3.5cm RC adenocarcinoma, 12cm from AV
Mod diff, EMVI+ LVI+ PNI-
3 LN; 4 liver mets
pT3pN1aM1a; Stage IVa. MSS, NRAS (G13R)
CEA: Oct-18= 12; Nov-18= 14, Mar-19= 2.4, Aug-19 <2.0
11/18 - FOLFOX x 6
3/19 - Liver resection
4-5/19 - 25 x pelvic radiation; complete met. response
07/19 - ULAR (robot), temp ileo, 1/27 LN
08/19 - Missed liver spot
08-11/19 - FOLFOX x 1, FOLFOXIRI x 1, FOLFIRI x 5
12/19 - Planned liver resection #2 & (01/20) stoma reversal

boxhill
Posts: 404
Joined: Fri Apr 06, 2018 11:40 am

Re: Sigmoid + Distant Lymph Nodes

Postby boxhill » Fri Aug 16, 2019 11:23 am

I would expect that he would have adjuvant chemo no matter what, given the number of malignant nodes that were removed.

My doctors have always said no to PET scans for me, especially soon after surgery, when they said that the chances of a bunch of things lighting up that were not malignant were too high. Not everything that lights up on a PET is malignant. Sometimes it is simply inflamed for some other reason, which seems to be a strong possibility with your husband's nodes. As as example, my husband had a pet scan at a couple years after prostate cancer surgery, because his PSA value was rising suspiciously. His right hip joint lit up. If I recall correctly they biopsied it, and it became clear that it was arthritic inflammation, not bone cancer. A number of years later he had a hip replacement.

It is pretty normal for chemo to start 5 or 6 weeks after surgery. Whether it is better to wait a week in order to start Avastin at the same time, I haven't the faintest idea.

This article gives a very good overview, I think.

https://www.uptodate.com/contents/color ... the-basics

I thought you might be particularly interested in this paragraph:

Benefit has also been shown for adding one of the epidermal growth factor receptor (EGFR)-targeted agents (cetuximab or panitumumab) to first-line chemotherapy if your tumor does not have a RAS or a BRAF V600E mutation. Newer data from clinical trials suggest that the site where the original colorectal cancer was located – right sided (ascending and transverse colon) versus left sided (descending and sigmoid colon, rectum) (figure 1) – might influence the relative benefit of adding an anti-EGFR agent or bevacizumab to the first-line chemotherapy regimen, with cetuximab being more effective in patients with left-sided primary tumors.


I'f your H doesn't have a KRAS mutation, you might ask the oncologist about using cetuximab instead of avastin.
F, 64 at DX CRC Stage IV
3/17/18 blockage, r hemi
11 of 25 nodes,5 mesentery nodes
5mm liver met out
pT3 pN2b pM1
BRAF wild, KRAS G12D
dMMR, MSI-H
5/4/18 FOLFOX
Neulasta 6/28
7/9/18 CT NED
11/20/18 CT NED. Enlarged spleen.
12/20/18 Liver MRI 5mm liver met? and 2 lymph nodes in porta hepatis
12/31/18 Keytruda
6/5/19 Triphasic CT LN and spleen normal, Liver node stable
6/28/19 Pause Keytruda, predisone for joint pain
7/31/19 Restart Keytruda
9/10/19 CT stable

Deb m
Posts: 518
Joined: Tue Jan 14, 2014 10:08 am

Re: Sigmoid + Distant Lymph Nodes

Postby Deb m » Fri Aug 16, 2019 11:48 am

Start folfox as soon as you can, add the other regiment later. If it's in your lymphatic system, you don't want to wait and see. That's my opinion.

Siti
Posts: 103
Joined: Thu Aug 01, 2019 10:58 am

Re: Sigmoid + Distant Lymph Nodes

Postby Siti » Sat Aug 17, 2019 4:24 am

Thank you everyone for your feedback.

Indeed we decided not to go with the watch and wait, it’s too risky.

Boxhill — thank you for sharing. We’ve asked our oncologist about FOLFOX + Anti EGFR but he seem to suggest that both regimens are equally as effective and he would keep this option open for second line.
Wife of DH (54) DX on 5/7/19
CEA value: 1.2
T loc: Sigmoid
T type: Adenocarcinoma
T grade: G3
Pos LNs: 30/31
Wild Type for KRAS, NRAS and BRAF
19/7/19 PET-CT Scan: Distant lymph nodes (para-aorta, neck & hip), est. size 0.5-1.5cm.
22/7/19 Surgery: Laparoscopic Colon Resection
26/8/19 Chemo: CAPEOX + Avastin x 9
6/11/19 CT Scan after 3rd cycle, all nodes have shrunk! Yay!!

WarriorSpouse
Posts: 205
Joined: Tue Aug 16, 2016 9:02 pm

Re: Sigmoid + Distant Lymph Nodes

Postby WarriorSpouse » Sat Aug 17, 2019 11:32 am

I am sorry to read this.

This is the exact same progression as my wife, beginning in the fall of 2014. She had an aggressive treatment plan established by Dana Farber in Boston, MA. One full year of 5FU and Avastin with about 3/4 months or Oxy until neuropathy stopped it.

She was then on maintenance chemo pills and Avastin for years 2 through 4, and now is back on aggressive treatments again with additional positive Para-aortic nodes. If the patient is young and can handle the aggressive treatments do it. Whatever nodes can be removed by surgery do it as well. Be purposeful in action and get other points of view, but do not wait for things to progress further.
Get to treatment as soon as recovery is met from the resection surgery.

Best of luck going forward.
WS
D/H 47 years old, 10/2014, Stage IV M/CRC, nodes 12/15, para-aortic, 5 cm sigmoid resection, positive Virchow. KRAS mut, MSS, Highly Differentiated, Lynch Neg, 5FU/LV and Avastin 1 YR (Oxi for 5 months), Zeloda/Bev since 01/2016. 02/2019 recurrence para-nodes, back to 5FU/LV Oxy/Bev. It is working again. "...Perseverance is not a long race; it is many short races one after the other."-Walter Elliot

Siti
Posts: 103
Joined: Thu Aug 01, 2019 10:58 am

Re: Sigmoid + Distant Lymph Nodes

Postby Siti » Sat Aug 17, 2019 4:42 pm

Thanks for your input WS.

I am really sorry that your wife had to endure this too. How is she on normal occasions? Do you guys lead a normal life? I see in your signature that you’re pending genetic results, what are they?

I can’t really find much info on distant lymph node mets and most papers seem to come out of Japan/Korea. Did you try to contact the doctors there to see if they have better knowledge on how to treat this disease? I tried writing to at least 4-5 of them via contact details on the paper but so far no answer.
Wife of DH (54) DX on 5/7/19
CEA value: 1.2
T loc: Sigmoid
T type: Adenocarcinoma
T grade: G3
Pos LNs: 30/31
Wild Type for KRAS, NRAS and BRAF
19/7/19 PET-CT Scan: Distant lymph nodes (para-aorta, neck & hip), est. size 0.5-1.5cm.
22/7/19 Surgery: Laparoscopic Colon Resection
26/8/19 Chemo: CAPEOX + Avastin x 9
6/11/19 CT Scan after 3rd cycle, all nodes have shrunk! Yay!!

WarriorSpouse
Posts: 205
Joined: Tue Aug 16, 2016 9:02 pm

Re: Sigmoid + Distant Lymph Nodes

Postby WarriorSpouse » Sun Aug 18, 2019 1:24 am

Genetic testing was inconclusive at this time. Maybe we will find out more at a later date.

If you live in the Netherlands you should have access to adequate and professional care. Go to your local cancer center and they should be well aware of what the treatment protocols are for this type of Metastasis. The plan that was followed is called the "Cairo Study" or plan. We are currently beyond that and breaking new ground, I suspect with initial treatment protocols again.

Lymph node metastasis is not the norm for CRC patients. You can find stories here with similar metastasis by searching Colon Talk blog conversations under "Olymphians," "Para Aortic," and "Virchow" Lymph node. The history goes back several years, so do not be discouraged in reading, There have been many advancements with each year moving forward as you will see reading older conversations.

Keep us posted of your progress All the best.
WS
D/H 47 years old, 10/2014, Stage IV M/CRC, nodes 12/15, para-aortic, 5 cm sigmoid resection, positive Virchow. KRAS mut, MSS, Highly Differentiated, Lynch Neg, 5FU/LV and Avastin 1 YR (Oxi for 5 months), Zeloda/Bev since 01/2016. 02/2019 recurrence para-nodes, back to 5FU/LV Oxy/Bev. It is working again. "...Perseverance is not a long race; it is many short races one after the other."-Walter Elliot

jep
Posts: 195
Joined: Sun Jun 11, 2017 7:45 pm

Re: Sigmoid + Distant Lymph Nodes

Postby jep » Sun Aug 18, 2019 6:32 am

Hi everyone....my husband is scheduled to have 2 para aortic nodes removed this Wednesday....the plan is to start maintenance chemo once he is healed and ready....nervous but hopeful...I will post an update later in the week.
Jep
Wife of DH (47) Stage IV CC on 5/16/17
T Loc: recto-sigmoid
T type: Adenocarcinoma
T size: 7.4 cm
T grade: G3
TNM code: T3N2M1
Pos LNs: 8 out of 20
Baseline CEA value: .9
LVI: present
Perineural invasion: present
LAR margins: clear (w/in microns)
Folfox (8/17-1/18)
Scope 6/18 - CLEAR! - 2 polyps removed
PET 10/17/18: 3 pos LNs
Irinotecan + Vectobix (started in 11/18)
CEA: 1.7 (2/19)
Xeloda + radiation (5/19)
Surgery scheduled: 8/21/19 (aborted)
Phase 1 Trial (October 2019 - ?)
Bypass surgery 12/6/2019

WarriorSpouse
Posts: 205
Joined: Tue Aug 16, 2016 9:02 pm

Re: Sigmoid + Distant Lymph Nodes

Postby WarriorSpouse » Sun Aug 18, 2019 9:59 am

Best wishes this week Jep.
I hope that they are successful on getting what they are looking for.
WS

Siti,
...As for do we have a normal life? Remember, once cancer enters a family's life, we all adjust to the "new normal" and appreciate each day. Life will never be the same like we were 20 again, nor 30, or even 40; but life at any age is well worth living!
WS
D/H 47 years old, 10/2014, Stage IV M/CRC, nodes 12/15, para-aortic, 5 cm sigmoid resection, positive Virchow. KRAS mut, MSS, Highly Differentiated, Lynch Neg, 5FU/LV and Avastin 1 YR (Oxi for 5 months), Zeloda/Bev since 01/2016. 02/2019 recurrence para-nodes, back to 5FU/LV Oxy/Bev. It is working again. "...Perseverance is not a long race; it is many short races one after the other."-Walter Elliot

Siti
Posts: 103
Joined: Thu Aug 01, 2019 10:58 am

Re: Sigmoid + Distant Lymph Nodes

Postby Siti » Sun Aug 18, 2019 3:13 pm

Sending you and your husband my best wishes and a successful surgery Jep!

WS, I’m still learning to cope. I am trying my best to stay positive but it’s so overwhelming. Every morning when I wake up, I wished it was just all a bad dream. It’s hard to be happy without feeling sad at the same time, but like you said, life is worth fighting for and I’ve never appreciated our love as much as do now. I’ll never again take for granted of life.
Wife of DH (54) DX on 5/7/19
CEA value: 1.2
T loc: Sigmoid
T type: Adenocarcinoma
T grade: G3
Pos LNs: 30/31
Wild Type for KRAS, NRAS and BRAF
19/7/19 PET-CT Scan: Distant lymph nodes (para-aorta, neck & hip), est. size 0.5-1.5cm.
22/7/19 Surgery: Laparoscopic Colon Resection
26/8/19 Chemo: CAPEOX + Avastin x 9
6/11/19 CT Scan after 3rd cycle, all nodes have shrunk! Yay!!

Brearmstrong
Posts: 89
Joined: Sun Mar 26, 2017 3:24 pm
Location: CT

Re: Sigmoid + Distant Lymph Nodes

Postby Brearmstrong » Sun Aug 18, 2019 8:39 pm

Jep, I am happy to hear that he will have the surgery. I will be thinking of you both and please let us know how he does.

-Brenda
45 F Jan 17 2 sons
tumor appendix/colon
Muc Adeno 4cm
mod diff G2 T4aN2
nodes 8/50
CEA 4.6 after surgery <.05
KRAS G12D MSS
FOLFOX Apr-sep 17
Clean CT Jul 2017 lung 4mm, clean CT oct 17, CEA 3.4, nov 17 8.1. May 18 2.3,1.0,1.3, 1.3, 1.0, 2.3, 2.2, 2.1,2.2,1.6
Oct 2017 clean CT
Nov 17 PET para aortic nodes Stage IV
Folfori w/avastin Dec 17 CEA 7.1
May 18- surgery to remove nodes- 5 positive xeloda continues
Aug 18-CT NED Clear CT's Nov 18, Feb 19, May 19, Aug 19,Nov19

Siti
Posts: 103
Joined: Thu Aug 01, 2019 10:58 am

Re: Sigmoid + Distant Lymph Nodes

Postby Siti » Sat Nov 09, 2019 3:56 pm

Hey everyone,

Just a quick update — my husband had his CT scan last week (after his 3rd chemo cycle). We couldn’t be happier with the results as all his swollen lymph nodes have shrunk. Both of us were in tears when the first thing he said to us was “I’ve got good news”. Our oncologist said if he were to see his CT scan without knowing he’s a cancer patient, he would think he is a normal healthy person :)

I don’t know what the future brings but this certainly gives us some hope and renewed energy since chemo is getting really tough. We’re hoping that chemo would really take care of the nodes so that he can have a long life ahead without suffering.

Thank you all for your advice. Everyone in this forum are truly remarkable and I promise to find a way to contribute back through every possible way — be it time, donations or advice.

Warm wishes from freezing Amsterdam!
Siti
Wife of DH (54) DX on 5/7/19
CEA value: 1.2
T loc: Sigmoid
T type: Adenocarcinoma
T grade: G3
Pos LNs: 30/31
Wild Type for KRAS, NRAS and BRAF
19/7/19 PET-CT Scan: Distant lymph nodes (para-aorta, neck & hip), est. size 0.5-1.5cm.
22/7/19 Surgery: Laparoscopic Colon Resection
26/8/19 Chemo: CAPEOX + Avastin x 9
6/11/19 CT Scan after 3rd cycle, all nodes have shrunk! Yay!!

AlexandraZ
Posts: 107
Joined: Fri Aug 23, 2019 8:25 am

Re: Sigmoid + Distant Lymph Nodes

Postby AlexandraZ » Sat Nov 09, 2019 5:32 pm

Yay Siti, what wonderful news! I'm so happy for you and your husband :D
Boyfriend 28yo dx February 2019, CEA 70,480
Stage 4 CRC with multiple mets to liver & lungs
KRAS, NRAS, BRAF wild type, MSS
12x FOLFIRI + Vectibix
September 2019 CEA 210, 60% reduction in size, chemo break!

Siti
Posts: 103
Joined: Thu Aug 01, 2019 10:58 am

Re: Sigmoid + Distant Lymph Nodes

Postby Siti » Sun Nov 10, 2019 4:22 am

AlexandraZ wrote:Yay Siti, what wonderful news! I'm so happy for you and your husband :D


Thanks Alexandra! I hope you and Jesper are enjoying your break in Mexico. I hope you’ll have a good meeting with the doctors at MSKCC. Sending positive vibes your way! :)
Wife of DH (54) DX on 5/7/19
CEA value: 1.2
T loc: Sigmoid
T type: Adenocarcinoma
T grade: G3
Pos LNs: 30/31
Wild Type for KRAS, NRAS and BRAF
19/7/19 PET-CT Scan: Distant lymph nodes (para-aorta, neck & hip), est. size 0.5-1.5cm.
22/7/19 Surgery: Laparoscopic Colon Resection
26/8/19 Chemo: CAPEOX + Avastin x 9
6/11/19 CT Scan after 3rd cycle, all nodes have shrunk! Yay!!


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