Olymphians w/ surgery advice/experiences??

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jep
Posts: 196
Joined: Sun Jun 11, 2017 7:45 pm

Olymphians w/ surgery advice/experiences??

Postby jep » Wed Jul 31, 2019 10:32 am

Just checking to see if any Olymphians here might have any advice or experiences to share with my husband who is scheduled for a 2nd surgery on August 21st. His only spread is to 2 distant nodes (the more troubling one being a para-aortic), and his surgeon is planning to remove my husband's entire rectum (due to a recurrence found during scope), as well as those 2 nodes (and anything else he may see while he's in there). The plan is to have a vascular specialist in the OR to assist as needed with the node next to the aorta. I'm pretty on edge about this surgery, but my husband is calm and relaxed . . . he wants it all out! Post surgery, his ONC wants him to begin xeloda + avastin as maintenance . . . any advice or thoughts are greatly appreciated, and thank you!!
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: 206
Joined: Tue Aug 16, 2016 9:02 pm

Re: Olymphians w/ surgery advice/experiences??

Postby WarriorSpouse » Thu Aug 01, 2019 12:35 am

Hey Jep,
My wife is about to face the same issue with discussions for the removal of two para-aortic nodes. I will keep you posted on what we learn and what the experiences are. I will post here as we move forward.
Best wishes.
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: 196
Joined: Sun Jun 11, 2017 7:45 pm

Re: Olymphians w/ surgery advice/experiences??

Postby jep » Thu Aug 01, 2019 8:52 am

Thank you WS....I too will keep you posted as we move toward this 8/21 surgery date....we are waiting to hear from MSK, as we had my husband’s most recent notes, scans, reports sent to his doc there....hoping that they agree with our local surgeon (or if not, have a better option for him)....wishing you and your wife the best, and thanks again!
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

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

Re: Olymphians w/ surgery advice/experiences??

Postby Siti » Thu Aug 01, 2019 11:25 am

Hello Jep,

This is my first post.

My husband is in a similar situation. He had his colon resection done via laparoscopy 10 days ago. Recovering very well and will start chemo mid-August. His PET-CT Scan shows a few distant lymph nodes (para-aorta, neck and hip).

We consulted 2 oncologists — one from Singapore and another in the Netherlands. They both suggested chemo to see if the LN shrink and don’t see the need for surgery at this stage.

I am really lost and worried because I don’t know if he would respond well to chemo and his CEA levels are really low so I don’t have a clue how they’re going to monitor his progress.

Trying to stay positive...I wish all the warriors here the best!

P/S: we live in Amsterdam and will be getting treated at the NKI. We were considering getting treated at MSK or MD Anderson if things don’t go well here but we were told that the medical bill would be in the millions of dollars! Is that true?
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!!

MetastaticEquilibria
Posts: 63
Joined: Wed Jul 10, 2019 4:42 am
Location: Japan

Re: Olymphians w/ surgery advice/experiences??

Postby MetastaticEquilibria » Thu Aug 01, 2019 11:16 pm

Siti wrote:P/S: we live in Amsterdam and will be getting treated at the NKI. We were considering getting treated at MSK or MD Anderson if things don’t go well here but we were told that the medical bill would be in the millions of dollars! Is that true?


You can get rough prices from them — look for their “International Patient” inquiry portals. I have done this (I am in Japan), and my recollection is that most procedures were in the high-tens to low-hundreds of thousands of dollars for a cash-basis patient. One procedure means something like surgery or a full course of radiation or chemo. They can review your case and give an estimate up front, which you pay before they begin treatment.

Generally, I concluded it doesn’t make sense to go to them (if you can even afford them) unless you want access to something they specialize in that you cannot get, or would have a hard time getting done, in your country. For example, HAI pump at MSK, or a wide variety of clinical trials at MDA.

Add: you can also request a remote second opinion from them for a-couple-to-a-few thousand dollars. You’ll need to get all your medical records, scans, etc. to them, and everything needs to be translated into English. This might at least put your mind at ease if they concur with your current plan of treatment.
Last edited by MetastaticEquilibria on Thu Aug 01, 2019 11:47 pm, edited 1 time in total.
M55 Stage 4 Japan
12/16 Tumor rect/sig jct
1/17 Resect T3N0M0+LVI
2-6/17 UFT+UZEL
7/17 Recurr.+2 liver mets
7-10/17 FOLFOX+Vectibix
11-12/17 FOLFOX+pelvic rad 60 Gy
1-7/18 FOLFOX+Vectibix
8-9/18 Liver protons 73 GyE
10-12/18 Xeloda+Avastin
2/19 New liver met
3/19 Liver protons 66 GyE
4/19 3 Lung mets
4-6/19 Vectibix
7-9/19 FOLFIRI+Cyramza
9/19 Biliary stent
10-11/19 Lonsurf+Avastin, new liver met
12/19 HAI (via port not pump)
CEA 1.4-223 now 96
CA19-9 2.8-258 now 258
RAS wild MSS MET+ TP53-
UGT1A1*28 homo

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

Re: Olymphians w/ surgery advice/experiences??

Postby Siti » Fri Aug 02, 2019 4:39 am

MetastaticEquilibria wrote:
You can get rough prices from them — look for their “International Patient” inquiry portals. I have done this (I am in Japan), and my recollection is that most procedures were in the high-tens to low-hundreds of thousands of dollars for a cash-basis patient. One procedure means something like surgery or a full course of radiation or chemo. They can review your case and give an estimate up front, which you pay before they begin treatment.

Generally, I concluded it doesn’t make sense to go to them (if you can even afford them) unless you want access to something they specialize in that you cannot get, or would have a hard time getting done, in your country. For example, HAI pump at MSK, or a wide variety of clinical trials at MDA.

Add: you can also request a remote second opinion from them for a-couple-to-a-few thousand dollars. You’ll need to get all your medical records, scans, etc. to them, and everything needs to be translated into English. This might at least put your mind at ease if they concur with your current plan of treatment.


Thanks so much for the tip! I’ll look into it :)
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!!

clj12288
Posts: 8
Joined: Tue Dec 12, 2017 11:09 am

Re: Olymphians w/ surgery advice/experiences??

Postby clj12288 » Fri Aug 02, 2019 7:33 am

Hi jep
I believe I responded to you before on a thread about para-aortic lymph nodes/olymphians.
I just had a major surgery in early June where they went in and got what tissue they could along my aorto/common illiacs as there were several 'hot spots' on scans that were persistent, even after a lot of chemo. The colorectal surgeon who did this told me he couldn't exactly just grab a couple lymph nodes because in that area it's difficult to discern what's a lymph node and what's not. They also had a vascular surgeon in the room thankfully, as they had to use a bovine graft on the area at the aortic bifurcation. I had radiation also to this area a few years ago and it caused very fragile veins/arteries in that area, so when there was manipulation from the colorectal surgeon it began to tear. I don't say this to worry you but rather that it's great to have a vascular surgeon there in case they are needed, and even if something happens, they can work quickly to resolve an issue. I'm doing fine now; it was a long recovery with it being such a long surgery (14 hours) but I am finally feeling back to normal, am back at work and beginning to do more physical activity (6-8 weeks of recovery).
Let me know if you have any questions about this surgery. It's major but you should find some comfort that no surgeon would undertake this if they thought it was highly unlikely to significantly help a patient. For me, I don't know what will happen in the coming months/years, but at this point, I'll be getting at a minimum 6 month break from chemo.
clj, 30
dx '14, stage IIIc sigmoid cc
colectomy, 12 folfox
7/15, stage IV, met to liver, retroperitoneal/para aortic LNs
8/15 - 11/15: folfiri + liver resection
2/16: 14 5FU + avastin & 4 folfiri +avastin
12/16 -2/17 - PA LN removal (5/10 LNs +) & 25 tx radiation
12/17 - PET confirms metastasis to right common illiac node, uptake in PA LNs
14 folfiri + avastin
9/18: Pet progression, left supraclavicular node, biopsy + for mets
Begin folfiri + vectibix
CEA: not useful. 0.9 now
KRAS wild type, MSS

jep
Posts: 196
Joined: Sun Jun 11, 2017 7:45 pm

Re: Olymphians w/ surgery advice/experiences??

Postby jep » Fri Aug 02, 2019 8:10 am

Siti wrote:Hello Jep,

This is my first post.

My husband is in a similar situation. He had his colon resection done via laparoscopy 10 days ago. Recovering very well and will start chemo mid-August. His PET-CT Scan shows a few distant lymph nodes (para-aorta, neck and hip).

We consulted 2 oncologists — one from Singapore and another in the Netherlands. They both suggested chemo to see if the LN shrink and don’t see the need for surgery at this stage.

I am really lost and worried because I don’t know if he would respond well to chemo and his CEA levels are really low so I don’t have a clue how they’re going to monitor his progress.

Trying to stay positive...I wish all the warriors here the best!

P/S: we live in Amsterdam and will be getting treated at the NKI. We were considering getting treated at MSK or MD Anderson if things don’t go well here but we were told that the medical bill would be in the millions of dollars! Is that true?


Hi Siti . . . it sounds like your husband's docs are following a similar path to our doctors here in the U.S. When my husband's nodes popped up on a scan, we did initially try chemo, but there was no change. The nodes did not get bigger, but they also did not shrink. My husband has really pushed for surgery, as this is something he feels strongly about (at this point). His surgeon (and the tumor board) agrees, so we're on that path. Your husband may respond well to the chemo, and hopefully the nodes will just shrink and become a non issue. That was our hope, and I'm sure that your docs are hoping for the same outcome.

My husband's CEA has also never been a great marker for him, but I think your docs will be vigilant with scans as they are monitoring these nodes. Maybe ask about monitoring, and how often they plan on scanning (?). What's the schedule?

Sounds like your husband's plan is a good one right now, and he will need to focus on recovering from surgery (so great that he had lap surgery!).

I will update this tread after surgery (or if any other details come up).
Definitely stay positive, and take care of yourself as well :)

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

jep
Posts: 196
Joined: Sun Jun 11, 2017 7:45 pm

Re: Olymphians w/ surgery advice/experiences??

Postby jep » Fri Aug 02, 2019 8:19 am

clj12288 wrote:Hi jep
I believe I responded to you before on a thread about para-aortic lymph nodes/olymphians.
I just had a major surgery in early June where they went in and got what tissue they could along my aorto/common illiacs as there were several 'hot spots' on scans that were persistent, even after a lot of chemo. The colorectal surgeon who did this told me he couldn't exactly just grab a couple lymph nodes because in that area it's difficult to discern what's a lymph node and what's not. They also had a vascular surgeon in the room thankfully, as they had to use a bovine graft on the area at the aortic bifurcation. I had radiation also to this area a few years ago and it caused very fragile veins/arteries in that area, so when there was manipulation from the colorectal surgeon it began to tear. I don't say this to worry you but rather that it's great to have a vascular surgeon there in case they are needed, and even if something happens, they can work quickly to resolve an issue. I'm doing fine now; it was a long recovery with it being such a long surgery (14 hours) but I am finally feeling back to normal, am back at work and beginning to do more physical activity (6-8 weeks of recovery).
Let me know if you have any questions about this surgery. It's major but you should find some comfort that no surgeon would undertake this if they thought it was highly unlikely to significantly help a patient. For me, I don't know what will happen in the coming months/years, but at this point, I'll be getting at a minimum 6 month break from chemo.


Hi, yes I remember your response. Thank you for this post . . . I'm happy to know that the vascular surgeon worked out for you, as this is making me feel better about my husband's surgery. My husband did have radiation to his lower colon, but not in the direct area of the nodes . . . hopefully that will help with the surgery a bit (?). Also, the plan is to have the 2 nodes dyed (by injection) so that they are easily discernible by the surgeons when they get in there.

Was your surgery open? My husband's will have to be because his first surgery was open and his surgeon is concerned about scar tissue. We are expecting about a 6 week (or more) recovery, but they are also removing his rectum. My husband is a school teacher and is hoping to get back to work some time in early October, but I told him not to rush it . . .
Thank you,
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: 206
Joined: Tue Aug 16, 2016 9:02 pm

Re: Olymphians w/ surgery advice/experiences??

Postby WarriorSpouse » Fri Aug 02, 2019 11:23 am

Siti,
FYI, traditional Chemotherapy treatments, 5FU, Oxy, and Avasin treatments can work for several years for those inflicted with lymph node metastasis. If you are in the Netherlands, they surely have access to those treatments under your current healthcare plan. I would not suggest being a cash patient in the U.S. unless traditional methods of treatment are prohibited there.

Also, those here that are MSS positive, it has been shown that Keytruda has been working with some patients when first line treatments begin to falter. In the U.S., the FDA has approved this treatment outside of regular trial studies, under the "Right to Try Act," when traditional first line treatments have failed. If the FDA says yes to treatment plans, your insurance should cover it if your oncologist prescribes it.

Best withes 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: Olymphians w/ surgery advice/experiences??

Postby Siti » Fri Aug 02, 2019 12:27 pm

Thank you very much for the info, WS. I’ll take note.

According to our doctor in Netherlands, my husband would need capecitabine and oxaliplatin (CAPEOX) for 3 months, but suspect it would likely be 6 months. Which I think is similar to what you’ve mentioned. I’ll ask him about Avastin when we meet next week. He also says that addition of targeted agents has no added value in this stage.

Meanwhile we’re meeting our Singapore oncologist on 6/8/19 when the DNA report returns. Would be interested to see if the same treatment plan is recommended by him.
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!!

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

Re: Olymphians w/ surgery advice/experiences??

Postby Siti » Fri Aug 02, 2019 12:45 pm

Thank you for responding Jep :) It’s true, I need to start taking care of myself because I am on the verge of breaking down. I am so thankful to have you guys to talk to, and also happy that my parents and sis flew into Singapore to give us support and help cook for my husband while he’s recovering.

When we go back to Netherlands, we’ll be on our own again as we’re new expats, trying to navigate through their healthcare system. Doesn’t quite help that we don’t understand Dutch! But hey, we’re trying our best to stay positive and everyone here in this forum has been amazing!

I’m keeping my fingers crossed that our spouses would all enter remission and have a bright future ahead, cured and free from disease!
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!!

TinaFish
Posts: 178
Joined: Sun Jul 21, 2019 10:11 am

Re: Olymphians w/ surgery advice/experiences??

Postby TinaFish » Sat Aug 03, 2019 7:05 pm

Haha, at first, I thought that the OP had misspelled the word "olympians." Reading through the thread, there sure are a lot of olympians on this site! I'd never heard of the word "olymphians" before - I gather it has something to do with lymph nodes?
F 45, single mother to son, 7 and daughter, 3
DX: stage 4 Rectal Cancer June 2019
Tumor Location: ? cm above anal verge
Tumor type: Adenocarcinoma
Tumor size: 5 cm
Tumor grade: ?
TNM code: ?
Stage : Stage IV-B
# of cancerous lymph nodes: ?
Mets: Numerous mets to liver, lungs
CEA: 22 in July; 11 as of August 15, 7 as of Sept 20
MSI status: MSS
KRAS/BRAF status: KRAS mutation
surgery: TBD
Ostomy surgery: TBD
Radiation therapy: TBD
Chemotherapy : CAPEOX+Avastin, 6 cycles, with CT scans after 3rd and 6th cycle.

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

Re: Olymphians w/ surgery advice/experiences??

Postby Siti » Mon Aug 05, 2019 4:29 pm

Hey Jep — did you guys consider proton beam or SBRT (Cyberblade)?
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!!

Cured
Posts: 541
Joined: Thu Nov 27, 2008 10:53 pm
Location: MO

Re: Olymphians w/ surgery advice/experiences??

Postby Cured » Mon Aug 05, 2019 5:29 pm

Jep, I believe that the Netherlands knows well how to treat cancer. I have read results of several clinical trials performed there. But you are right to research as much as you can. WE are the managers of our health; the doctors are our advisers.

May God give you all comfort and strength.
5-08:Stg 3 Rectal: 6/14 Nodes
Ace Surgeon Remvd 90%Rectum,lots of Colon-Full Incision
Ileo Rev'd 6 Mos.
Radiatn+5fu Pre-Surgery
FOLFOX 8 CyclDone 1-09
Clear Scope 8-17; CEA 2-18
Glory to God! Healed by prayers of many: for 10 years
7-18: tumor pressing against brain Removed
Metastatic to lung. CEA 6.9
Folfiri
CEA to 4.5 after 1 chemo
After 8rds CEA 3
CEA 1.8, 2.3,1.7,2.2
12 rds Folfiri
Avastin evy 3 wks
Had Seizure Anti-seizure meds work-no driving for 6 months
Neuro allows me to drive again 0 meds


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