Page 1 of 1

NEW DK37 AND MAIA MSS-CRC CLINICAL TRIAL FINDER!

Posted: Wed May 17, 2017 8:49 am
by DK37
BIG NEWS ANNOUNCEMENT!

I'm excited to announce a new curated Stage IV MSS-CRC clinical trial finder tool that I have developed with the help of Maia from here in Colon Talk, Fight Colorectal Cancer and Flatiron Health! As always, I advocate patients using multiple tools to try to find clinical trials and I am excited to bring my fellow patients "another tool in the toolbox" for them to find potential trials to discuss with their medical teams!

Please check it out - it has been a labor of love for me to work on this project. I never imagined that my personal "trials to watch" spreadsheet I used to post to various CRC support groups would eventually be converted to such an amazing professional-quality resource for fellow patients to use. I'm biased :) but I think it is very user friendly and does an especially good job of finding potential immunotherapy trial options which are sometimes hard to find!

Please check it out and let me know in the comments what you think! It is meant to be "patient powered" so ideas and constructive criticism welcome!!

To Life!
-DK37!
Links:
Trial finder: http://trialfinder.fightcrc.org/
My personal blog on the trial finder: https://adventuresinlivingterminallyopt ... al-finder/
Fight CRC's Press Release: https://fightcolorectalcancer.org/blog/ ... -released/

Re: NEW DK37 AND MAIA MSS-CRC CLINICAL TRIAL FINDER!

Posted: Wed May 17, 2017 10:33 am
by CRguy
In addition to sending you MEGA CHEERS ! ....
I have linked this new information into our Clinical Trials Sticky
A DK37 CURATED MSS-CRC CLINICAL TRIAL FINDER! >> UPDATED

Best wishes buddy
CRguy

Re: NEW DK37 AND MAIA MSS-CRC CLINICAL TRIAL FINDER!

Posted: Wed May 17, 2017 3:31 pm
by DK37
CRguy wrote:In addition to sending you MEGA CHEERS ! ....
I have linked this new information into our Clinical Trials Sticky
A DK37 CURATED MSS-CRC CLINICAL TRIAL FINDER! >> UPDATED

Best wishes buddy
CRguy



Thank you for the sticky CR! Awesome!! I honestly think this trial finder has the potential to help many fellow patients navigate the very confusing world of clinical trials!

Cheers!
-DK

Re: NEW DK37 AND MAIA MSS-CRC CLINICAL TRIAL FINDER!

Posted: Wed May 17, 2017 3:52 pm
by Maia
DK37 wrote: I honestly think this trial finder has the potential to help many fellow patients navigate the very confusing world of clinical trials!


I agree with Tom, on this and on that it is a labor of love, for me, too. May it help many Stage IV patients to find better treatments, that bring durable responses or even a CURE :)

Re: NEW DK37 AND MAIA MSS-CRC CLINICAL TRIAL FINDER!

Posted: Wed May 17, 2017 10:55 pm
by Stanfordmom
Thank you so much, Tom and Cee Cee!

You two are the most wonderful and kindest people. Thank you for working so hard to help all of us!

Sha

Re: NEW DK37 AND MAIA MSS-CRC CLINICAL TRIAL FINDER!

Posted: Thu May 18, 2017 11:04 am
by Lee
Stanfordmom wrote:Thank you so much, Tom and Cee Cee!

You two are the most wonderful and kindest people. Thank you for working so hard to help all of us!

Sha


Agree. We are very fortunate to have both of your expertise on this forum. Thank you for all that you do.

Lee

Re: NEW DK37 AND MAIA LATE STAGE MSS-CRC CLINICAL TRIAL FINDER!

Posted: Fri Jan 05, 2018 2:34 pm
by O Stoma Mia
Just a note to say that the Late Stage MSS-CRC Clinical Trial Finder developed by DK37 and Maia is now being curated and kept up-to-date by Fight CRC's staff and research advocate volunteers, as explained in this November 2017 announcement by Fight CRC.

"Late Stage MSS-CRC Trial Finder: A curated list powered by patients. This trial finder is a one-stop place to find and learn about high-impact clinical trials for CRC patients. You can search for clinical trials open in your geography, and for which you may be eligible. This patient-centered tool emphasizes the relationship between patient values and the desire to find clinical trials with meaningful impact for their treatment. It is curated and reviewed by Fight CRC’s staff and research advocate volunteers in partnership with Dr. Tom Marsilje."

Ref: http://trialfinder.fightcrc.org


Here is link to a booklet on Clinical Trials written by Dr. Tom Marsilje:

Clinical Trials
https://5xlhc2qz20k3jc6dy3g31xb4-wpengine.netdna-ssl.com/wp-content/uploads/2017/10/ClinicalTrials_MiniMag_2017.pdf
.
UPDATE April 2019:
Now the Late Stage MSS-CRC Trial Finder is available as an app, both on Android and on iOS:

https://fightcolorectalcancer.org/blog/fight-crc-to-launch-clinical-trial-finder-app/

Re: NEW DK37 AND MAIA MSS-CRC CLINICAL TRIAL FINDER!

Posted: Fri Jan 05, 2018 3:12 pm
by Robino1
O Stoma Mia wrote:Just a note to say that the Late Stage MSS-CRC Clinical Trial Finder developed by DK37 and Maia is now being curated and kept up-to-date by Fight CRC's staff and research advocate volunteers, as explained in this November 2017 announcement by Fight CRC.

"Late Stage MSS-CRC Trial Finder: A curated list powered by patients. This trial finder is a one-stop place to find and learn about high-impact clinical trials for CRC patients. You can search for clinical trials open in your geography, and for which you may be eligible. This patient-centered tool emphasizes the relationship between patient values and the desire to find clinical trials with meaningful impact for their treatment. It is curated and reviewed by Fight CRC’s staff and research advocate volunteers in partnership with Dr. Tom Marsilje."

Ref: http://trialfinder.fightcrc.org


I've been looking at that trial finder and I think I found the one that Mrs.Zig's husband is on.

Here is the description of theirs from the first post found here: viewtopic.php?f=1&t=59159

BEACON trial Phase III at Sloan Kettering. It has 3 arms to the trial - one is a control arm, one has two drugs used to target BRAF and MEK inhibitor, and another arm has the three drug combo used to target EGFR, BRAF and the MEK signaling pathway.


The trial I found is this one: https://clinicaltrials.gov/ct2/show/NCT02928224

Trial # NCT02928224

http://trialfinder.fightcrc.org/trials/ ... erapyName=

Question: I notice that there are different locations, is it possible to go to a location to get the same trial experience or is it better to go with a major cancer center listed in the top 10 in the country? (like Sloan Kettering)

Re: NEW DK37 AND MAIA MSS-CRC CLINICAL TRIAL FINDER!

Posted: Sun Jan 07, 2018 12:54 am
by O Stoma Mia
Robino1 wrote:Question: I notice that there are different locations, is it possible to go to a location to get the same trial experience or is it better to go with a major cancer center listed in the top 10 in the country? (like Sloan Kettering)

Yes, you are correct. This is the trial that Mr Ziggy is on. However, it is not possible to guarantee in any way that you would get the same trial experience.

The main reason is that this is a Phase 3 randomized clinical trial (RCT) with three arms. If you enroll in this trial at any of the 190 available centers, you will first be randomized to one of the three available treatment groups. There is no guarantee that you will be assigned to.the first group (the three-drug combo group that Mr Ziggy is in). You might be assigned to one of the other two groups. You or your doctor cannot choose which group you are assigned to. This is done automatically by random assignment. This is the way that Phase 3 trials work.

Brief Summary:
This is a multicenter, randomized, open-label, 3-arm Phase 3 study to evaluate encorafenib + cetuximab plus or minus binimetinib versus Investigator's choice of either irinotecan/cetuximab or FOLFIRI/cetuximab, as controls, in patients with BRAFV600E mCRC whose disease has progressed after 1 or 2 prior regimens in the metastatic setting. The study contains a Safety Lead-in Phase in which the safety and tolerability of encorafenib + binimetinib + cetuximab will be assessed prior to the Phase 3 portion of the study.


You can read about Phase 3 trials in this booklet on Clinical Trials written by Dr. Tom Marsilje, particularly page 11, which explains why you have no choice in treatment option for Phase 3 trials. The only choice you have in Phase 3 trials is to drop out of the trial if you are assigned to a group that you don't like:
https://5xlhc2qz20k3jc6dy3g31xb4-wpengine.netdna-ssl.com/wp-content/uploads/2017/10/ClinicalTrials_MiniMag_2017.pdf

"...Patients in RCTs can’t choose their treatment, nor can their doctors..." (page 18)


Zig2017 wrote:It has 3 arms to the trial - one is a control arm, one has two drugs used to target BRAF and MEK inhibitor, and another arm has the three drug combo used to target EGFR, BRAF and the MEK signaling pathway. He starts Tuesday Nov. 28th and was randomized to get the 3 drugs Encorafenab, Binimetinib, Cetux (spelling might be wrong, sorry). Dr. Rona Yaeger is heading it up.

.
.

Re: NEW DK37 AND MAIA MSS-CRC CLINICAL TRIAL FINDER!

Posted: Sun Jan 07, 2018 7:35 am
by Robino1
Thank you. Now I'm understanding how that all works. I've never had a reason to look at trials or even figure out how experimental treatments work before cancer entered my life.

Still learning :)