Olymphians w/ surgery advice/experiences??

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

Re: Olymphians w/ surgery advice/experiences??

Postby jep » Mon Aug 05, 2019 8:28 pm

Siti wrote:Hey Jep — did you guys consider proton beam or SBRT (Cyberblade)?


No, this is the first time I’m hearing these terms....I did look them up and I will share this info with my husband.
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

Achilles Torn
Posts: 118
Joined: Fri Dec 16, 2016 2:41 pm

Re: Olymphians w/ surgery advice/experiences??

Postby Achilles Torn » Wed Aug 07, 2019 10:53 am

My lymph node spread is more extensive, but I did meet with a surgeon who seemed confident he could remove para aortic nodes if the spread were limited to that region. It sounds like this is the case for your husband which is good news. All surgical procedures carry risk so it's normal to worry. Based on what I can read hear I'm optimistic you will have a good outcome here.

Keep us posted
AT
40 yo Male. BC Canada. Sigmoid Colectomy Dec. 2016
Pathology T3N2bM1 19 of 24 Nodes Positive + tumour deposits
PET scan - Para-Aortic and Iliac Lymph node spread. Stage VI.
Moderately differentiated. MSS. KRAS/BRAF Wild.
Mutations: TP53, ERBB4, MLL3, PDCD1LG2, PRKDC, SMAD3
FOLFOX Commenced Jan 9/2017 - Avastin(Bev) added after round 1.
June 2017 Dose Reduction on Round 11 due to Neuropathy.
Good PET Scan July 2017 - on maintenance 5FU/Bev every 2 weeks until progression.

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

Re: Olymphians w/ surgery advice/experiences??

Postby Siti » Sat Aug 10, 2019 1:45 am

Hey Olymphians,

I read this and it looks very promising. Anyone any thoughts?
How about those of you from Japan?
MetastaticEquilibria


Micro-CT scan : https://www.tohoku.ac.jp/en/press/lymph_nodes.html

Lymph Node Targeted Therapy:
https://researchoutreach.org/articles/l ... r-therapy/

Do you think they’re going into trials soon?
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 » Sun Aug 11, 2019 1:25 am

Siti wrote:Hey Olymphians,

I read this and it looks very promising. Anyone any thoughts?
How about those of you from Japan?
MetastaticEquilibria


Micro-CT scan : https://www.tohoku.ac.jp/en/press/lymph_nodes.html

Lymph Node Targeted Therapy:
https://researchoutreach.org/articles/l ... r-therapy/

Do you think they’re going into trials soon?


According to your second link, they are planning Phase 1 trials of the lymphatic chemo delivery system, but no time line is given. Contact info is given for the leader of this research, Prof. Kodama at Tohoku University, so you could conceivably send him an e-mail asking about how soon trials may commence.

My guess is that the timing is unlikely to be soon enough for your needs, though. As I understand it, Phase 1 trials are only for testing the safety of a new treatment, not the effectiveness, which doesn’t get directly addressed until Phases 2 and 3. (But note that I’m not in the medical field, and could have this mixed up or misremembered.)
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 » Sun Aug 11, 2019 3:54 am

MetastaticEquilibria wrote:
According to your second link, they are planning Phase 1 trials of the lymphatic chemo delivery system, but no time line is given. Contact info is given for the leader of this research, Prof. Kodama at Tohoku University, so you could conceivably send him an e-mail asking about how soon trials may commence.



I have written to that email yesterday. Let’s see if they reply. I noticed a lot more work on lymph node metastasis coming out of Japan and Korea than the west. I’ll continue to look for answers.
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 » Sun Aug 11, 2019 5:33 am

Siti wrote:
MetastaticEquilibria wrote:
According to your second link, they are planning Phase 1 trials of the lymphatic chemo delivery system, but no time line is given. Contact info is given for the leader of this research, Prof. Kodama at Tohoku University, so you could conceivably send him an e-mail asking about how soon trials may commence.



I have written to that email yesterday. Let’s see if they reply. I noticed a lot more work on lymph node metastasis coming out of Japan and Korea than the west. I’ll continue to look for answers.


Let us know if you hear anything. Note that it is Obon in Japan now, so he may not be checking mail very regularly for the next week or so.
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 » Mon Aug 19, 2019 3:29 am

Hey everyone -- The lab admin has replied, stating that they're going to trial next year and those who are interested to participate can watch for the announcement dates on their website. I am not certain which trial phase they are in, I have enquired and will get back to you once I get an 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!!

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

Re: Olymphians w/ surgery advice/experiences??

Postby MetastaticEquilibria » Mon Aug 19, 2019 6:18 am

Good that you heard back.
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

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

Re: Olymphians w/ surgery advice/experiences??

Postby jep » Mon Aug 19, 2019 11:06 am

Siti wrote:Hey everyone -- The lab admin has replied, stating that they're going to trial next year and those who are interested to participate can watch for the announcement dates on their website. I am not certain which trial phase they are in, I have enquired and will get back to you once I get an answer.


Thank you for looking into this Siti!! Please keep us posted...
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 » Fri Aug 23, 2019 5:49 am

Hello Jep,

This is the reply I got from Kodama admin:

The clinical trial that we plan is on lymph node metastasis treatment using the lymphatic drug delivery system (LDDS). In Japan, our laboratory is supposed to be at the forefront of the research on treatment targeting lymph nodes. Therefore, we are very sorry to tell you that we don't have any more info with regards to lymph node metastasis treatment in Japan.

——

Perhaps you could keep an eye on the trials when they announce it next year on their website? They’ve been testing this since 2016 with promising results and they’ve also received a grant to proceed. Though it would be in phase I.

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!!

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

Re: Olymphians w/ surgery advice/experiences??

Postby jep » Fri Aug 23, 2019 6:18 am

Siti wrote:Hey Jep — did you guys consider proton beam or SBRT (Cyberblade)?


My husband's oncologist has suggested something that sounds like SBRT . . . intense/targeted radiation given in 5 sessions . . . I will double check with him, but it sounds exactly like SBRT . . . I've read that the "Proton Beam" is only for solid tumors (not cancer that has spread to other parts of the body) . . . not sure about that and will have to research a bit more . . . I will definitely be keeping an eye on the possible trial coming out of Japan . . .
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

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

Re: Olymphians w/ surgery advice/experiences??

Postby Rock_Robster » Fri Aug 23, 2019 8:15 am

jep wrote:
Siti wrote:Hey Jep — did you guys consider proton beam or SBRT (Cyberblade)?


My husband's oncologist has suggested something that sounds like SBRT . . .

Also often referred to SABR so could be that.

Good 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

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

Re: Olymphians w/ surgery advice/experiences??

Postby jep » Wed Sep 18, 2019 7:46 pm

Hey everyone....just a quick update on my husband’s LN situation. The surgery did not go as planned and the lymph nodes are not resectable....one is even wrapping around (and slightly compressing) his vena cava....we met with his onc at MSK today and she is very optimistic about radiation (the cyberblade that was mentioned earlier in this thread). She also recommended a clinical trial....so happy to have some options on the table! She feels that radiation can be done now or later, but that the clinical trials aren’t always available; therefore, my husband should really think about how he would like to proceed. She suggested meeting with his radiology oncologist to discuss long term effects....2 more appts in the next week or so, and then important decisions to be made...the highs and lows of this madness are really overwhelming....thank you for the support over the past 2+ years <3
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 Sep 19, 2019 2:30 am

Glad to hear there are options and that my small input was able to help a little.

What would the trial entail?

Wishing your husband the best outcome and stay strong, Jep! You’ve been amazing.
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!!

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

Re: Olymphians w/ surgery advice/experiences??

Postby jep » Thu Sep 19, 2019 8:51 pm

Hi Siti!
The trial is a combination of Temozolomide and Nivolumab. The Temo is a pill and the Nivo is an injection (once every 2 weeks, I believe)....still not sure if my husband qualifies, or if this is the direction he wants to go.....cyberblade radiation sounds very promising as well....tough choices brewing.....
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


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