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.firstname.lastname@example.org
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!
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
8/13 Enlarged lymphs - Stable
10/14 Stage IV. Lung & Lymph mets. 5-FU+bev
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 ModelDK37 Science Posts List