NEW DK37 AND MAIA MSS-CRC CLINICAL TRIAL FINDER!

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DK37
Posts: 510
Joined: Tue Sep 17, 2013 8:31 am
Location: San Diego

NEW DK37 AND MAIA MSS-CRC CLINICAL TRIAL FINDER!

Postby DK37 » Wed May 17, 2017 8:49 am

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/
6/4/2012 Dx Stage 3C CRC @ 40 yo. MSS, KRAS-WT, BRAF-WT, p53-mut
7/12 FOLFOX/FOLFIRI
2/13 NED!
8/13 Enlarged lymphs - Stable
10/14 Stage IV. Lung & Lymph mets. 5-FU+bev
3/15 Cetuximab
11/15 FOLFIRI + bev
11/16 Signs of FOLFIRI resistance (Lymph mets)
1/17 Palliative radiation for resistant mets
2/17 FOLFIRI + bev + Maraviroc (off-label)
3/17 FOLFIRI + Erbitux + Maraviroc (off-label)
MSS-CRC Clinical Trial Finder: http://trialfinder.fightcrc.org/
2016 Colondar 2.0 Model
DK37 Science Posts List

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CRguy
Posts: 9408
Joined: Sun Feb 10, 2008 6:00 pm

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

Postby CRguy » Wed May 17, 2017 10:33 am

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
Caregiver x 3
Stage IV A rectal cancer/lung met
10 Year survivor
my life is an ongoing totally randomized UNcontrolled experiment with N=1 !
Review of my Journey so far

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DK37
Posts: 510
Joined: Tue Sep 17, 2013 8:31 am
Location: San Diego

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

Postby DK37 » Wed May 17, 2017 3:31 pm

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
6/4/2012 Dx Stage 3C CRC @ 40 yo. MSS, KRAS-WT, BRAF-WT, p53-mut
7/12 FOLFOX/FOLFIRI
2/13 NED!
8/13 Enlarged lymphs - Stable
10/14 Stage IV. Lung & Lymph mets. 5-FU+bev
3/15 Cetuximab
11/15 FOLFIRI + bev
11/16 Signs of FOLFIRI resistance (Lymph mets)
1/17 Palliative radiation for resistant mets
2/17 FOLFIRI + bev + Maraviroc (off-label)
3/17 FOLFIRI + Erbitux + Maraviroc (off-label)
MSS-CRC Clinical Trial Finder: http://trialfinder.fightcrc.org/
2016 Colondar 2.0 Model
DK37 Science Posts List

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Maia
Posts: 2443
Joined: Fri Aug 24, 2012 8:00 am

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

Postby Maia » Wed May 17, 2017 3:52 pm

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 :)

Stanfordmom
Posts: 613
Joined: Wed May 14, 2014 1:32 am

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

Postby Stanfordmom » Wed May 17, 2017 10:55 pm

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
DX 4/2/2014 at 44, stage 4, mets liver and ovaries
Mom to 2 boys
Three surgeries, HAI pump and lots of chemo
fighting!

Lee
Posts: 5463
Joined: Sun Apr 16, 2006 4:09 pm

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

Postby Lee » Thu May 18, 2017 11:04 am

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
rectal cancer - April 2004
46 yrs old at diagnoses
stage III C - 6/13 lymph positive
radiation - 6 weeks
surgery - August 2004/hernia repair 2014
permanent colostomy
chemo - FOLFOX
NED - 10 years and counting!

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O Stoma Mia
Posts: 1072
Joined: Sat Jun 22, 2013 6:29 am

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

Postby O Stoma Mia » Fri Jan 05, 2018 2:34 pm

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
.
.
Last edited by O Stoma Mia on Sun Jan 07, 2018 4:36 am, edited 1 time in total.
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Useful Links:

How to Create a Signature
https://coloncancersupport.colonclub.co ... 97#p421597

How to Find a Board-Certified Surgeon
viewtopic.php?f=1&t=52349&p=410280#p410280

How to interpret a Pathology Report
viewtopic.php?f=1&t=51436&p=399172#p399172

Understanding TNM Staging
http://www.cancer.net/cancer-types/colo ... cer/stages

User avatar
Robino1
Posts: 346
Joined: Fri Aug 11, 2017 12:09 pm
Facebook Username: Robin.lawthers
Location: Florida

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

Postby Robino1 » Fri Jan 05, 2018 3:12 pm

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)
At 54 2014 1st colonoscopy colon cancer detect
Colon resect margins clear. No chemo Stage II
2017
Distend abd, pain in intestines.
CT scan seeding & Ascites
Lap diag - cancer on the omentum
CEA 217 CEA 219
FOLFOX started 6/17
CEA 202 Not genetic
8/29/17 CT excellent melting of tumor.
12/8/17 Markedly decr ant peritoneal nodularity since 8/29/17 compat w/ marked posi respns to therapy
CEA: (2017)9/30 -109; 10/12 -99.1; 11/4 -90.7; 11/30 -70.7; 12/14 -83.4; (2018)1/4 -73.3; 2/1-84.2 Damnit
BRAF V600e

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O Stoma Mia
Posts: 1072
Joined: Sat Jun 22, 2013 6:29 am

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

Postby O Stoma Mia » Sun Jan 07, 2018 12:54 am

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.

.
.
◄▐▐▐▐▐▐▐ ►

Useful Links:

How to Create a Signature
https://coloncancersupport.colonclub.co ... 97#p421597

How to Find a Board-Certified Surgeon
viewtopic.php?f=1&t=52349&p=410280#p410280

How to interpret a Pathology Report
viewtopic.php?f=1&t=51436&p=399172#p399172

Understanding TNM Staging
http://www.cancer.net/cancer-types/colo ... cer/stages

User avatar
Robino1
Posts: 346
Joined: Fri Aug 11, 2017 12:09 pm
Facebook Username: Robin.lawthers
Location: Florida

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

Postby Robino1 » Sun Jan 07, 2018 7:35 am

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 :)
At 54 2014 1st colonoscopy colon cancer detect
Colon resect margins clear. No chemo Stage II
2017
Distend abd, pain in intestines.
CT scan seeding & Ascites
Lap diag - cancer on the omentum
CEA 217 CEA 219
FOLFOX started 6/17
CEA 202 Not genetic
8/29/17 CT excellent melting of tumor.
12/8/17 Markedly decr ant peritoneal nodularity since 8/29/17 compat w/ marked posi respns to therapy
CEA: (2017)9/30 -109; 10/12 -99.1; 11/4 -90.7; 11/30 -70.7; 12/14 -83.4; (2018)1/4 -73.3; 2/1-84.2 Damnit
BRAF V600e


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