The Colon Club

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.

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

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.

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?

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.

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.

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

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

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.

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