Olymphians w/ surgery advice/experiences??

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jep
Posts: 145
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

Achilles Torn
Posts: 117
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: 13
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 (Amsterdam)
CEA value: 1.2
T loc: Sigmoid
T type: Adenocarcinoma
T grade: G3
Pos LNs: 30/31
Wild type | BRAF normal
Pre-surgery PET-CT Scan 19/7/19 (Singapore): Distant lymph nodes (para-aorta, neck & hip), lit, est. size 0.5-1.5cm.
Met: clear except lit distant lymph nodes (inconclusive)
Surgery: Laparascopic Colon Resection 22/7/19
Scheduled chemo: late-August CAPEOX + Avastin x 8 (Amsterdam)

MetastaticEquilibria
Posts: 21
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 rectal/sigmoid jct
1/17 Resect stage 2 T3N0M0+LVI
2-6/17 UFT+UZEL
7/17 Recurr.+2 liver mets stage 4
7-10/17 FOLFOX+Vectibix
11-12/17 FOLFOX+pelvic rad (x/gamma 60 Gy)
1-7/18 FOLFOX+Vectibix
8-9/18 Liver rad (protons 73 Gy)
10/18-12/18 Xeloda+Avastin
2/19 New liver met
3/19 Liver rad (protons 66 Gy)
4/19 3 lung mets
4-6/19 Vectibix
7/19-now FOLFIRI+Cyramza
8/19 Lung mets stable
CEA 1.4-223 now 12.6
CA19-9 2.8-105 now 65
RAS wild MSS MET+func TP53-func
UGT1A1*28 homo

Siti
Posts: 13
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 (Amsterdam)
CEA value: 1.2
T loc: Sigmoid
T type: Adenocarcinoma
T grade: G3
Pos LNs: 30/31
Wild type | BRAF normal
Pre-surgery PET-CT Scan 19/7/19 (Singapore): Distant lymph nodes (para-aorta, neck & hip), lit, est. size 0.5-1.5cm.
Met: clear except lit distant lymph nodes (inconclusive)
Surgery: Laparascopic Colon Resection 22/7/19
Scheduled chemo: late-August CAPEOX + Avastin x 8 (Amsterdam)

MetastaticEquilibria
Posts: 21
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 rectal/sigmoid jct
1/17 Resect stage 2 T3N0M0+LVI
2-6/17 UFT+UZEL
7/17 Recurr.+2 liver mets stage 4
7-10/17 FOLFOX+Vectibix
11-12/17 FOLFOX+pelvic rad (x/gamma 60 Gy)
1-7/18 FOLFOX+Vectibix
8-9/18 Liver rad (protons 73 Gy)
10/18-12/18 Xeloda+Avastin
2/19 New liver met
3/19 Liver rad (protons 66 Gy)
4/19 3 lung mets
4-6/19 Vectibix
7/19-now FOLFIRI+Cyramza
8/19 Lung mets stable
CEA 1.4-223 now 12.6
CA19-9 2.8-105 now 65
RAS wild MSS MET+func TP53-func
UGT1A1*28 homo


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