Olymphians w/ surgery advice/experiences??

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Siti
Posts: 150
Joined: Thu Aug 01, 2019 10:58 am

Re: Olymphians w/ surgery advice/experiences??

Postby Siti » Fri Sep 20, 2019 1:26 pm

My colleague recommended this to me recently — her friend knows the founder.

I have yet to write to them but I think if you’re looking for trials this could help guide you to the right direction. I’m not sure if they’re any good but I guess no harm enquiring if you’re interested.

https://trial-in.com/
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: 150
Joined: Thu Aug 01, 2019 10:58 am

Re: Olymphians w/ surgery advice/experiences??

Postby Siti » Mon Sep 23, 2019 1:11 am

Hi Jep,

More knowledge sharing here, I just read about this - Cryotherapy. Essentially they use a probe/ needle to freeze / kill the cancer cells. Minimal invasive. I am not certain if it could work but worth the reading up too. There’s also Immuno-cryotherapy techniques.

All the best and thinking of you and your husband!

I’m getting ready to accompany my husband to the hospital for his second round of chemo today. I hope he doesn’t have bad side effects this time around!
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: 239
Joined: Sun Jun 11, 2017 7:45 pm
Location: New England, USA

Re: Olymphians w/ surgery advice/experiences??

Postby jep » Mon Sep 23, 2019 5:11 pm

Thank you Siti....I will research that technique....sounds very interesting....the trial in NYC is closed....we got the call today....that’s ok though, as we are headed to Yale on Wednesday to see what they have to offer. My husband may decide to go with the radiation (cyberblade)....
Wife of DH (47) Stage IV CC 5/16/17
T Loc: recto-sig
T type: Adenocarcinoma
T size: 7.4 cm
T grade: G3
TNM code: T3N2M1
Pos LNs: 8/20
BL CEA: .9
LVI: present
Perineural invasion: present
LAR margins: clear (w/in microns)
Folfox (8/17-1/18)
Scope 6/18 - CLEAR! - 2 polyps
PET 10/17/18: 3 pos LNs
Irino + Vecti (started in 11/18)
CEA: 1.7 (2/19)
Xel + rad (5/19)
Surgery: 8/21/19 (aborted)
P1 Trial 10/19 - 12/19
Bypass 12/6/19
Folfox + vecti 1/2/19 - 4/3/20
Kid Fail 5/1/20
Folfiri + Avastin 5/4/20 -

jep
Posts: 239
Joined: Sun Jun 11, 2017 7:45 pm
Location: New England, USA

Re: Olymphians w/ surgery advice/experiences??

Postby jep » Wed Sep 25, 2019 2:01 pm

Well, 3 different doctors have now suggested that my husband move forward with a clinical trial....they feel that his treatment needs to be systemic (and that radiation can be done at any point)....great appointment at Smilow today....they have 2 trials in mind for my husband, But the team meets tomorrow to discuss the best trial....availability is uncertain, but we’re due for a little luck :wink:
Wife of DH (47) Stage IV CC 5/16/17
T Loc: recto-sig
T type: Adenocarcinoma
T size: 7.4 cm
T grade: G3
TNM code: T3N2M1
Pos LNs: 8/20
BL CEA: .9
LVI: present
Perineural invasion: present
LAR margins: clear (w/in microns)
Folfox (8/17-1/18)
Scope 6/18 - CLEAR! - 2 polyps
PET 10/17/18: 3 pos LNs
Irino + Vecti (started in 11/18)
CEA: 1.7 (2/19)
Xel + rad (5/19)
Surgery: 8/21/19 (aborted)
P1 Trial 10/19 - 12/19
Bypass 12/6/19
Folfox + vecti 1/2/19 - 4/3/20
Kid Fail 5/1/20
Folfiri + Avastin 5/4/20 -

jep
Posts: 239
Joined: Sun Jun 11, 2017 7:45 pm
Location: New England, USA

Re: Olymphians w/ surgery advice/experiences??

Postby jep » Sat Oct 26, 2019 12:08 pm

Hi everyone...just checking in, as my husband starts a Phase 1 clinical trial at Yale on Monday....immunotherapy....we’re hopeful but nervous. They did a CT scan and noticed that the lymph nodes have shifted a bit and are pressing on his ureter. He will need to have a stint put in....meeting with urologist on Tuesday. It feels like there are always glitches and stumbling blocks at every turn, but I guess that’s just the way it is. Hoping that Monday goes well and there are no reaction or issues. Hope everyone is doing well :)
jep
Wife of DH (47) Stage IV CC 5/16/17
T Loc: recto-sig
T type: Adenocarcinoma
T size: 7.4 cm
T grade: G3
TNM code: T3N2M1
Pos LNs: 8/20
BL CEA: .9
LVI: present
Perineural invasion: present
LAR margins: clear (w/in microns)
Folfox (8/17-1/18)
Scope 6/18 - CLEAR! - 2 polyps
PET 10/17/18: 3 pos LNs
Irino + Vecti (started in 11/18)
CEA: 1.7 (2/19)
Xel + rad (5/19)
Surgery: 8/21/19 (aborted)
P1 Trial 10/19 - 12/19
Bypass 12/6/19
Folfox + vecti 1/2/19 - 4/3/20
Kid Fail 5/1/20
Folfiri + Avastin 5/4/20 -

Siti
Posts: 150
Joined: Thu Aug 01, 2019 10:58 am

Re: Olymphians w/ surgery advice/experiences??

Postby Siti » Sat Oct 26, 2019 2:28 pm

All the best to your husband, I am hoping for good results! stay strong Jep!
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: 150
Joined: Thu Aug 01, 2019 10:58 am

Re: Olymphians w/ surgery advice/experiences??

Postby Siti » Sat Oct 26, 2019 2:45 pm

Is this immunotherapy treatment opened to the MSS patients or are they looking for certain mutations to qualify?
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: 239
Joined: Sun Jun 11, 2017 7:45 pm
Location: New England, USA

Re: Olymphians w/ surgery advice/experiences??

Postby jep » Sat Oct 26, 2019 8:35 pm

My husband is MSS, so yes, they are accepting MSS in this trial.
Wife of DH (47) Stage IV CC 5/16/17
T Loc: recto-sig
T type: Adenocarcinoma
T size: 7.4 cm
T grade: G3
TNM code: T3N2M1
Pos LNs: 8/20
BL CEA: .9
LVI: present
Perineural invasion: present
LAR margins: clear (w/in microns)
Folfox (8/17-1/18)
Scope 6/18 - CLEAR! - 2 polyps
PET 10/17/18: 3 pos LNs
Irino + Vecti (started in 11/18)
CEA: 1.7 (2/19)
Xel + rad (5/19)
Surgery: 8/21/19 (aborted)
P1 Trial 10/19 - 12/19
Bypass 12/6/19
Folfox + vecti 1/2/19 - 4/3/20
Kid Fail 5/1/20
Folfiri + Avastin 5/4/20 -


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