Best clinical trial(s) - stage 4 w liver mets

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Zod
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Best clinical trial(s) - stage 4 w liver mets

Postby Zod » Wed Sep 04, 2019 5:39 pm

Can somebody recommend how to find best relevant clinical trials for my situation? Stage 4 with liver mets, microsatellite stable do no PD-L1, don't seem to have any of the "good" mutations that allow specialized immunotherapy or similar treatments to be used (one genetic test still in progress).

Currently on folfoxiri hoping to become liver-resectable but want to look at other treatments in case can't get cured.

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Jack&KatiesMommy
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Joined: Wed Dec 21, 2011 1:08 pm
Location: Columbus, OH

Re: Best clinical trial(s) - stage 4 w liver mets

Postby Jack&KatiesMommy » Thu Sep 05, 2019 8:18 am

Have you considered an HAI pump at Memorial Sloan Kettering yet? It saved my life....and got me to resection when systemic chemo alone could not. That would be my first step if I was starting over with liver mets.

Cynthia
Cynthia
Mommy to Jack (8) now (16) and Katie (4) now (12)
(My Most Precious Things)
Dx 8/11 Stage IV CRC (liver mets) CEA 2,600+
9/11 Folfiri 2/12: Failed Liver Resection
5/12 HAI pump/removed primary
4/13 Liver Resection
8/13-12/15 (10) RFAs lungs
5/17: Upper Left Lobe of lung resected.
02/18: 3 new mets lymph nodes lung:
05/18: Keytruda (MSS w/Intermediate TMB): CEA: 66.4, 39.2, 23.8, 13, 3.5 1.8, 1.0, 2.8 3.9, 5.0, 5.6, 1.5, .8, .8, 1.1, 1.1, .7
7/18; 9/18; 11/18; 2/19 Clear CT scans

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ginabeewell
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Joined: Wed Oct 24, 2018 10:30 am

Re: Best clinical trial(s) - stage 4 w liver mets

Postby ginabeewell » Thu Sep 05, 2019 9:02 am

Jack&KatiesMommy wrote:Have you considered an HAI pump at Memorial Sloan Kettering yet? It saved my life....and got me to resection when systemic chemo alone could not. That would be my first step if I was starting over with liver mets.

Cynthia


Ditto. And I had heard the sooner you start with the pump the more likely it is to be effective.
45 year old mom of twins (8) and lucky stepmom of 14 and 16 year olds
9/17/18 DX stage 4 CRC w inoperable liver mets
9/20/18 CEA 931
10/1/18 FOLFOX + Vectibix planned 12 rounds
12/12/18 CT scan showed typhlitis (7 days in hospital) but largest met down to 5 cm. Chemo holiday.
12/26/18 CEA 4.6
1/14/18 Resume chemo (#6-8)
3/27/19 HAI pump placement / colon resection
4/8/19 Resume chemo (#9-19) FOLFOX (no OX) + Vectibix
5/20/19 CEA 1.3
7/19/19 1st liver resection
10/16/19 2nd liver resection

Rock_Robster
Posts: 340
Joined: Thu Oct 25, 2018 5:27 am
Location: Melbourne, Australia

Re: Best clinical trial(s) - stage 4 w liver mets

Postby Rock_Robster » Thu Sep 05, 2019 9:24 am

ginabeewell wrote:
Jack&KatiesMommy wrote:Have you considered an HAI pump at Memorial Sloan Kettering yet? It saved my life....and got me to resection when systemic chemo alone could not. That would be my first step if I was starting over with liver mets.

Cynthia


Ditto. And I had heard the sooner you start with the pump the more likely it is to be effective.

And I think the HAI trial at NIH still has places too?
Male 37; Melbourne, Australia
10/2018 Dx 3.5cm RC adenocarcinoma, 12cm from AV
Mod diff, EMVI+ LVI+ PNI-
3 LN; 4 liver mets, resectable
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, TRG 3
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 & stoma reversal

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ginabeewell
Posts: 313
Joined: Wed Oct 24, 2018 10:30 am

Re: Best clinical trial(s) - stage 4 w liver mets

Postby ginabeewell » Thu Sep 05, 2019 10:22 am

Rock_Robster wrote:And I think the HAI trial at NIH still has places too?


Yes - the place I read about it mentioned that there were plenty of slots open and they were happy to open additional ones if more patients apply.
45 year old mom of twins (8) and lucky stepmom of 14 and 16 year olds
9/17/18 DX stage 4 CRC w inoperable liver mets
9/20/18 CEA 931
10/1/18 FOLFOX + Vectibix planned 12 rounds
12/12/18 CT scan showed typhlitis (7 days in hospital) but largest met down to 5 cm. Chemo holiday.
12/26/18 CEA 4.6
1/14/18 Resume chemo (#6-8)
3/27/19 HAI pump placement / colon resection
4/8/19 Resume chemo (#9-19) FOLFOX (no OX) + Vectibix
5/20/19 CEA 1.3
7/19/19 1st liver resection
10/16/19 2nd liver resection

Zod
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Joined: Wed Aug 28, 2019 2:56 pm
Facebook Username: Zod

Re: Best clinical trial(s) - stage 4 w liver mets

Postby Zod » Thu Sep 05, 2019 8:05 pm

I'll ask my oncologist about that. Meet with him right after the next scan (first scan after starting folfoxiri) in 1 1/2 weeks.

Butt
Posts: 25
Joined: Mon Mar 11, 2019 10:48 pm

Re: Best clinical trial(s) - stage 4 w liver mets

Postby Butt » Thu Sep 05, 2019 8:32 pm

I got a HAI pump but it went into lungs.....

Rock_Robster
Posts: 340
Joined: Thu Oct 25, 2018 5:27 am
Location: Melbourne, Australia

Re: Best clinical trial(s) - stage 4 w liver mets

Postby Rock_Robster » Fri Sep 06, 2019 1:29 am

I agree with the others’ advice suggesting that HAI is probably a great place to start, if you’re in the US with liver-limited mets. You could access this directly with a hospital, or a via a trial (the NIH one has the bonus of covering your travel/accommodation costs too).

Another area you may want to investigate in parallel is immunotherapy trials for MSS patients. There are a number around, and there’s also a Facebook group for it. Most of these focus on combining PD1 checkpoint inhibitors (such as Keytruda & Opdivo) with other drugs to elicit a response in MSS patients (as the REGONIVO trial surprisingly did with Regorafenib), but there are also a few more creative ones out there using things like CAR-T, vaccines and onoclytic viruses. Just be aware than most immuno trials will have “any prior immunotherapy” as any exclusion criteria, so you want to choose your trial prudently if you go down this route.

A couple of good starting points for trial searching are below. There are also some groups on various social media that focus on finding trials; let me know if more info there is helpful.

https://www.cancer.gov/about-cancer/tre ... als/search

https://clinicaltrials.gov/

Of course it can’t hurt to also ask your oncologist, but as you’ve clearly already figured we can’t rely on them to do the legwork.

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, resectable
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, TRG 3
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 & stoma reversal

Zod
Posts: 20
Joined: Wed Aug 28, 2019 2:56 pm
Facebook Username: Zod

Re: Best clinical trial(s) - stage 4 w liver mets

Postby Zod » Fri Sep 06, 2019 12:35 pm

Rob,

Can you point me at some social media groups that look at finding clinical trials? I can analyze the technical aspects of the trials but there are so many it's hard to cut through to the important stuff.

Rock_Robster
Posts: 340
Joined: Thu Oct 25, 2018 5:27 am
Location: Melbourne, Australia

Re: Best clinical trial(s) - stage 4 w liver mets

Postby Rock_Robster » Fri Sep 06, 2019 7:34 pm

Zod wrote:Rob,

Can you point me at some social media groups that look at finding clinical trials? I can analyze the technical aspects of the trials but there are so many it's hard to cut through to the important stuff.

No worries, here’s a few more things to have a look at:

CRC Trial Finder: trialfinder.fightcrc.org

This is a general Stage IV group but worth joining as there’s often posts about high-interest trials, results, etc - sometimes using the hashtag #clinicaltrials : https://www.facebook.com/groups/stage4c ... ?ref=share

This is a small group for members currently in a trial: https://www.facebook.com/groups/2497526 ... ?ref=share

If you’re on Twitter, the group @oncoalert often post about trials with the tag #oncoalert. Downside of this is it’s all cancers not just CRC, so most won’t be relevant.

It doesn’t hurt to read the latest ASCO conference proceedings as many high-impact trials get reported there. Highlights are often posted either on the stage 4 FB group or via Twitter (check @ASCO past tweets). The hashtag #ASCO19 will focus on this year’s (past) conference.

Of course there’s also lots of threads here about trials worth searching, including two stickies on the front page - one for NEWS UPDATES that’s updated sometimes with trial announcements and results, and another Trials thread which is less active at the moment.

Hope this is of some help.

Cheers
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, resectable
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, TRG 3
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 & stoma reversal


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