A DK37 CURATED MSS-CRC CLINICAL TRIAL FINDER!

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DK37
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A DK37 CURATED MSS-CRC CLINICAL TRIAL FINDER!

Postby DK37 » Wed Jan 04, 2017 5:42 pm

BIG ANNOUNCEMENT FOR CRC PATIENTS/GIVERS:
AN ENTIRELY NEW MSS-CRC CLINICAL TRIAL FINDER BASED UPON MY PERSONAL CURATED CLINICAL TRIAL LIST!

I’m excited to announce for the first time today a MAJOR advocacy project I have been working on for over a year now! Please read below and share – this is one of the most exciting projects I have worked on in my entire life! I think it potentially has the power to save lives.

Everyone acknowledges that clinicaltrials.gov is VERY hard for patients to navigate to get information on clinical trials.
When I first searched for “colorectal cancer” trials – I got >1,200 hits – even as an oncology drug discovery scientist I had no idea how to handle >1,200 hits. I felt like just throwing up my hands & giving up…

This happens to many Stage IV cancer patients EVERY DAY. They become DEER IN HEADLIGHTS, freeze and give up on trying to find a clinical trial.

In the age of immunotherapies – in theory, that could have life or death consequences. Due (in part) to simply… BAD SOFTWARE.

I decided I wanted to do something about it.

So with the incredible help of two other grass-roots collaborators (our very own Maia (!) and Jana Downing), we did.

PRESENTING: THE “NO DEER HERE COLORECTAL MSS TRIALS TRIAL FINDER”
(prototype v1.0 – please contact us with bugs, issues & ideas to improve! Comments below or Email: No.Deer.Here.37@gmail.com..)

It is an ENTIRELY DIFFERENT WAY of organizing MSS-CRC Clinical Trial information for patients, caregivers AND their oncologists.
It is NOT an electronic clinical trial finder (thus it is complementary to e.g. the Colon Cancer Alliance CRC trial finder!)

It is a CURATED list of trials based upon fellow patient feedback to me of what THEY wanted to know – it is NOT a list of ALL possible CRC trials.

All via an EASY TO USE WEB PAGE (thank you Jana Downing!) and WEB & PHONE APPS (thank you Maia!).

This curated list of MSS-CRC patient eligible trials started as my own personal “trial list” at home. Working with Maia and Jana, I am THRILLED to offer this continuously updated trial information resource now to ALL MSS-CRC patients.

There is a heavy focus on: IMMUNOTHERAPY trials and non-immunotherapy trials with SIGNS OF CLINICAL EFFICACY already shown.

It is updated in close to real time.

It includes these key patient AND oncologist needed parameters: 1.) Prior PD1 inhibitor use exclusion criteria 2.) Hyperlinks to scientific/medical literature to help facilitate MD medical discussion

Here is the link – the Web Page went live today! The Web & Phone Apps are accessible from the web page: http://colorectalmsstrials.org/

The three of us hope you find our project very helpful as informational resources to facilitate medical discussions with your oncologist/medical team!

To Life!
-DK37

PS: The methodology I use to create the curated ~REAL TIME trial list is NOT MSS-CRC specific. It can be done for ANY CANCER TYPE. I welcome advocates and activists from other cancer types to contact me – I would love to share the methodology I use in order to potentially aid many more Stage IV patients – NO MATTER WHAT THE RIBBON COLOR. The total cost of the CRC project so far is: $200. In terms of continuing workload (overhead) – it only requires 1-2 HOURS PER WEEK. I do it in my spare time, it really is THAT EASY…
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
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Re: A DK37 CURATED MSS-CRC CLINICAL TRIAL FINDER!

Postby CRguy » Wed Jan 04, 2017 6:19 pm

VERY IMPRESSIVE !!!!!

I have linked this topic into our permanent sticky for CLINICAL TRIALS and Important Links

CHEERS and Mega Harmony to you folks for such an important and timely project !
CRguy
Caregiver x 3
Stage IV A rectal cancer/lung met
11 Year survivor
my life is an ongoing totally randomized UNcontrolled experiment with N=1 !
Review of my Journey so far

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Maia
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Re: A DK37 CURATED MSS-CRC CLINICAL TRIAL FINDER!

Postby Maia » Wed Jan 04, 2017 6:26 pm

CRguy, put

Canada

in the search box of the app and you will see!!
Everyone can try their USA state or country. : )

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CRguy
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Re: A DK37 CURATED MSS-CRC CLINICAL TRIAL FINDER!

Postby CRguy » Wed Jan 04, 2017 6:50 pm

SWEEEEET app ! :mrgreen:

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HopeForJesse
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Location: Philadelphia

Re: A DK37 CURATED MSS-CRC CLINICAL TRIAL FINDER!

Postby HopeForJesse » Wed Jan 04, 2017 6:57 pm

This is amazing!!! THANKS VERY MUCH as always!
DH DX 01/16 49 YO inop RC stage IV liver mets
MSS, mod dif adenocarcinoma, high grade dysplasia, TP53 APC,BRCA2
12/15 CEA 241, FOLFOX to 11/16
LAR/ileo 5/16 Clear margins 1/29 nodes
HAI, reversal, liver resections/ablations 7/16
FUDR 8/16 FOLFOX resume 8/16 reaction -NED 3 mos
Rising CEA 3/17 Xeloda, 5/17 -12/17 Erbitux & Iri stable but lung/lymph mets CEA 2.7
4/18 CEA 87 :( radiation to sternum met recommended
Ephesians 3:20 Our God is able to do immeasurably more than we can ask or imagine!

lpas
Posts: 999
Joined: Wed Nov 19, 2014 11:11 pm

Re: A DK37 CURATED MSS-CRC CLINICAL TRIAL FINDER!

Postby lpas » Wed Jan 04, 2017 11:05 pm

What an incredible resource!! Thanks so much to all involved.
11/14 Dx sigmoid CC @ 45yo
12/14 Colectomy + hysterectomy
Stage IIIB, T3N1bM0, 2/20 nodes, MSS, G2, KRAS(A146T), TP53, SMAD4, ERBB2, CEA 1.0
2/15-7/15 XELOX & Celebrex
3/16 Ovarian mass removed. Benign fibroid
9/16 clean scope
4/18 clean CT
Ongoing Celebrex, Tagamet & other carefully-targeted supplements
Post-chemo CEA 3.0, 2.5, 2.3, 2.0, 1.6, 1.3, 1.8, 2.1, 1.8, 2.0, 1.8, 1.9, 1.7, 1.5, 1.6, 1.5, 1.4, 1.4, 1.3, 1.3, 1.6, 1.6, 1.3, 1.4, 1.6, 2.2
Mom to a 4 & 6yo

karaj
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Location: Boston
Contact:

Re: A DK37 CURATED MSS-CRC CLINICAL TRIAL FINDER!

Postby karaj » Wed Jan 04, 2017 11:27 pm

Many, many thanks for this wonderful resource! I feel more empowered already.
36 y/o female, dx at 32
8/14 dx Stage IIIC, 10/30 lymph nodes
8/14-9/14: sigmoidoscopy, fertility preservation, port-a-cath
9/14 - 3/15: FOLFOX (allergic to oxaliplatin, underwent desensitization)
4/15: NED
1/16: dx Stage IV, recurrence in three lymph nodes behind abdomen
2/16: FOLFIRI
8/16: NED
8/17: NED, currently under no treatment, scans every 3 months
http://www.karaincancerland.com

karaj
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Joined: Mon Aug 18, 2014 10:17 pm
Location: Boston
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Re: A DK37 CURATED MSS-CRC CLINICAL TRIAL FINDER!

Postby karaj » Wed Jan 04, 2017 11:32 pm

Many, many thanks for this wonderful resource! I feel more empowered already.
36 y/o female, dx at 32
8/14 dx Stage IIIC, 10/30 lymph nodes
8/14-9/14: sigmoidoscopy, fertility preservation, port-a-cath
9/14 - 3/15: FOLFOX (allergic to oxaliplatin, underwent desensitization)
4/15: NED
1/16: dx Stage IV, recurrence in three lymph nodes behind abdomen
2/16: FOLFIRI
8/16: NED
8/17: NED, currently under no treatment, scans every 3 months
http://www.karaincancerland.com

hawkowl
Posts: 97
Joined: Sun Dec 14, 2014 5:29 am
Location: MN/FL

Re: A DK37 CURATED MSS-CRC CLINICAL TRIAL FINDER!

Postby hawkowl » Thu Jan 05, 2017 2:17 am

This is great! Thank you so much
Dx 12/2014 T3N2MX (iliac nodes) low rectal
12/2014-4/2015: FOLFOX (8 cycles)
4/2015-6/2015: 28 cycles of chemoradiation with xeloda
8/2015: Robotic APR with iliac node dissection; path showed ypT0,ypN0 (complete pathological response).
11/2015 scans clear, CEA 2.1
11/2015 parastomal hernia repair
3/2016 CEA 1.7
10/2017 CEA remains in normal range (1.4), scans stable.
6/2018 CEA still normal.

Totally disabled due to oxaliplatin induced neuropathy and dysautonomia

Wonderfullymade
Posts: 122
Joined: Tue Jan 12, 2016 4:33 pm

Re: A DK37 CURATED MSS-CRC CLINICAL TRIAL FINDER!

Postby Wonderfullymade » Thu Jan 05, 2017 9:49 am

You guys are amazing! Thank you for all your time and expertise! I really love the name also!
Wonderfullymade
DX 3/2015 53
Stage IVa CC w/liver met
BRAF/KRAS wild type MSI-High Lynch?
Folfox 3 cycles
5/2015 ER for subtotal colectomomy due to perforated colon, ovary removed
Folfuri/Pantiumumab 5 cycles
8/2015 liver resection, gallbladder removed and new LN
10/2015 CT scan new nodes
10/2015 Pembro started CEA 2.2
5/2017 stable lung things, coltis, lymph nodes stable cea 1/2017 1.1

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

Re: A DK37 CURATED MSS-CRC CLINICAL TRIAL FINDER!

Postby Maia » Thu Jan 05, 2017 10:12 am

We wish it helps to those looking for clinical trials!
It's made with dedication and I would say even with love.
I'm personally grateful to Tom, who allowed me to participate/make real something that has been a long-time kept dream/interest for me. : )

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peanut_8
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Joined: Sun May 25, 2014 1:31 pm
Location: Capital of Texas

Re: A DK37 CURATED MSS-CRC CLINICAL TRIAL FINDER!

Postby peanut_8 » Thu Jan 05, 2017 10:47 am

Thanks you guys. So helpful!!!
Terri aka peanut
diagnosed Jan 14, RC stage 2a, age 56
permanent colostomy
MSS
April 14, 28 chemo/rad with Xeloda
June 14 adjuvant Xeloda 6 rounds
currently NED

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GrouseMan
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Location: SE Michigan USA

Re: A DK37 CURATED MSS-CRC CLINICAL TRIAL FINDER!

Postby GrouseMan » Thu Jan 05, 2017 2:44 pm

DK - Thanks for this - I took a look at the site today attempting to locate a few options for my wife, now that she has failed her first trial (Iri, Erbitux and Avastin) A 20% growth (4 to 6 mm) in 2 of them over a period of 9 months which is the criteria for failure. They were small to begin with. I see a few trials you list I may attempt to investigate further. She is MSS-CRC and all mets other than the ones in her abdomen are stable and under control (calcified or gone). She only has 4 or 5 I think she said and the biggest is pressing against her ureter between kidney and bladder. They are not all that big yet. Any trials on your priority list?

Regards,

GrouseMan
DW 53 dx Jun 2013
CT mets Liver Spleen lung. IVb CEA~110
Jul 2013 Sig Resct
8/13 FolFox,Avastin 12Tx mild sfx, Ongoing 5-FU Avastin every 3 wks.
CEA: good marker
7/7/14 CT Can't see the spleen Mets.
8/16/15 CEA Up, CT new abdominal mets. Iri, 5-FU, Avastin every 2 wks.
1/16 Iri, Erbitux and likely Avastin (Trial) CEA going >.
1/17 CEA up again dropped from Trial, Mets growth 4-6 mm in abdomen
5/2/17 Failed second trial, Hospitalized 15 days 5/11. Home Hospice 5/26, at peace 6/4/2017

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

Re: A DK37 CURATED MSS-CRC CLINICAL TRIAL FINDER!

Postby DK37 » Fri Jan 06, 2017 7:23 am

CRguy wrote:
I have linked this topic into our permanent sticky for CLINICAL TRIALS and Important Links

CRguy


THANKS CR!!!

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

Re: A DK37 CURATED MSS-CRC CLINICAL TRIAL FINDER!

Postby DK37 » Fri Jan 06, 2017 7:32 am

ALSO - this is a true grass-roots effort run by 3 simple activists... (me, Maia from CT and Jana Downing, a Stage IV MSS-CRC patient/activist not on CT).

I KNOW we have/will miss the occasional trial that meets the curation parameters I have chosen to use [ 1.) Immunotherapy trial that allows MSS-CRC patient participation - Phases 1-3 and 2.) Non-immunotherapy trial which showed CRC clinical efficacy in Phase 1 - Phase 2-3 trials only ]

YOU CAN BE A PART/HELP this Grassroots effort PLEASE contact us (either by Colon Talk PM or the email listed on the website & app) if you see:

1.) a trial you think meets the curation parameters that is not listed/missing in the trial finder list
2.) if you call a trial on the list and they say they are no longer recruiting MSS-CRC, let us know that too - so it can be removed from the list!

We want to keep this list as accurate and real-time (currently ~weekly) as possible!

This can be a true CRC patient/caregiver COMMUNITY effort - led by US as key drivers of the project!
The methodology used to construct the list is sound - but "many pairs of eyes" will make it run even better!

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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