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Metastatic Breast Cancer Trial Search

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We are proud to present Metastatic Trial Talk, the first-ever clinical trial search engine designed specifically for people with metastatic breast cancer. Check it out, and please post here to share your experience using the tool!

Metastatic Trial Talk was developed by BreastCancerTrials.org in collaboration with Breastcancer.org, Living Beyond Breast Cancer, Metastatic Breast Cancer Network, Triple Step Toward the Cure, Young Survival Coalition. It was made possible by funding from the Avon-Pfizer Metastatic Breast Cancer Grants Program.



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Comments

  • kebab
    kebab Member Posts: 98
    edited September 2015
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    I took a brief look this morning. I really love the short questionnaire that begins the process. Seems to collect all the relevant information. I did have a hard time finding information about where the trials of interest are located though. There's no geographical information given in the details, and often when I clicked the Contact information link, all I got was a page listing the same email and phone number over and over... and still no hint of where the trial is available.

    Thanks for this new tool though! I look forward to checking it out some more.

  • moderators
    moderators Posts: 8,278
    edited September 2015
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    kebab, thanks for the feedback. We really hope that the tool can help some people!

  • leggo
    leggo Member Posts: 379
    edited September 2015
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    Hi Mods. This is a great thing. Just thought I'd give you my Canadian perspective. It worked without zip code, so that's good and possibly opens up some options for us. The contact information is a very helpful tool. Thank you! I wish we had something like this for Canadian trials. We, as a rule, don't know about them unless we research them ourselves or oncs think we benefit, so we're kinda on our own. I've always disliked how trials here have been kept within some secret oncologist society. Probably don't want to be inundated with phone calls , so this gives even us Canadians a little extra ammo.

  • moderators
    moderators Posts: 8,278
    edited September 2015
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    Really great feedback, leggo! Thanks for sharing!

  • GemStateGirl
    GemStateGirl Member Posts: 55
    edited September 2015
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    I just looked at this quickly and have to say I think it will be a fantastic resource. I did find some of the studies didn't list the location sites but then some of them actually did. Not sure why some do and some don't because I think the location of the studies is really important information in trying to figure out which ones would be feasible to do. In the ones that listed locations sites, I liked the feature of listing the number of miles the closest site was to your home. I also liked the feature listing how often you would need to visit the site. All in all, I'm thrilled to have this available. Thank you for creating it.

  • LindaE54
    LindaE54 Member Posts: 1,379
    edited September 2015
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    Ditto what Leggo said. I'm also in Canada. Thank you Mods.

  • nancyh
    nancyh Member Posts: 185
    edited September 2015
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    Mods - thank you so much, this is awesome. My onc is trying to find a pi3kinase or MEK inhibitor trial that would accept me...now I can help her with the search. Thanks!

  • NYCchutzpah
    NYCchutzpah Member Posts: 148
    edited October 2015
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    Thanks Mods I have to discuss this with my oncologist I am so fortunate to be very close to the city/

  • Nanita_daughter
    Nanita_daughter Member Posts: 13
    edited October 2015
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    Anyone considering or on the immunotherapy trial MPDL3280A? Mom is screening for this trial, would appreciate anyones thoughts, experience! thank you!!

    Nancyh- Cobimetinib is a MEK inhibitor actually with trials open for first line treatment for TNBC…I would also go www.clinicaltrials.gov and see the other combinations

  • bestbird
    bestbird Member Posts: 232
    edited October 2015
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    As a software developer, designer, tester, and Project Manager before my retirement, I'm accustomed to validating new software and enjoyed participating in testing this new and promising site.

    Upon seeing this announcement, I went back to validate the results and still found some of the same critical issues I reported after my initial testing:

    1. One might expect that the more sites of metastasis that are checked, the broader the range of available trials would be.In fact, the results do not support this.

    a. When only Bone is checked, 57 trials are listed.

    b. When Brain and Bone are checked, 46 trials are listed.

    In fact, the set of trials returned for both metastatic sites should be larger than for just one metastatic site. If a patient has both brain and bone mets, they should be able to see all trials for either brain or bone, whereas I suspect that the logic is using AND instead of OR.

    2. Similar to the above, when the area for "Breast Cancer Type" is left unchecked, 101 trials are returned. But if one checks "TNBC" there are 174 trials in the list. This makes no sense whatsoever. If nothing is checked under "Breast Cancer Type" then trials that pertain to all types of breast cancer (TNBC, Hromone Positive, HER2+) should be returned.

    Until this key issue is fixed, people with mbc will be denied the opportunity to view and assess all trials that may be of benefit to them.

  • KiwiCatMom
    KiwiCatMom Member Posts: 2,337
    edited October 2015
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    Page won't load here in New Zealand. :(

  • moderators
    moderators Posts: 8,278
    edited October 2015
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    Bestbird and Kiwi, I sent your comments along!!

  • bestbird
    bestbird Member Posts: 232
    edited October 2015
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    Mods, thank you!

  • nancyh
    nancyh Member Posts: 185
    edited October 2015
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    Bestbird - I agree with you about the "and" versus "or" logic, but another possible explanation for the search results returning fewer studies when more boxes are checked is because certain mets, brain in particular, are exclusion criteria for participating in many trials. Not sure if the tool is sophisticated enough to look at exclusion criteria, but that crossed my mind when I was using it.

    Another possible explanation is simply that the underlying data contained in the clinical trials database is likely pretty jumbled, fragmented, and non-codified. I worked in healthcare IT for 20 years and have a tiny glimpse into how few data standards exist in the industry.

    Just a general comment, this tool, while not perfect is still a step in the right direction and easier to use than the search functions on clinicaltrials.gov, which I find super frustrating. (again, it probably speaks more to the complexities in the underlying data sources than to bugs with the software, but that's just a hunch on my part).

    My hat is off to the folks who developed this tool - look forward to version 2.0!

  • bestbird
    bestbird Member Posts: 232
    edited October 2015
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    nancyh, you raise a good point about exclusion criteria! That doesn't seem to be what is happening in the searches.

    I checked Female, Postmenopausal and Hormone Receptor Positive.

    1. Then I checked Liver as the site of metastases and received 3 results when clicking on the "Radiation Oncology" filter. The three results, which were relevant for liver mets, were:

    NCT01697371

    NCT01642290

    NCT02206334

    2. Then I checked only Brain as the site of metastases and received 2 results when clicking on the "Radiation Oncology" filter. The two results, which were relevant for brain mets, were:

    NCT00377156

    NCT01445483

    3.When I checked both Brain and Liver, I received exactly the same 2 results when clicking on the "Radiation Oncology" filter as I received in Step 2. The two results, which were relevant for brain mets only, were:

    NCT00377156

    NCT01445483

    4. Thinking this might be a cache clearing problem, I unchecked all metastatic sites and obtained the results. Then I re-did step 3 and received exactly the same two trials when clicking Radiation Oncology.

    So there's definitely an issue with the logic. Hopefully it will not be hard to fix.

  • bestbird
    bestbird Member Posts: 232
    edited October 2015
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    suersis, ain't that the truth! :)

  • bestbird
    bestbird Member Posts: 232
    edited October 2015
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    Mods, just wondering whether you may have heard anything from the developers regarding the above issues?

    Once the items have been corrected, this will be an outstanding tool for enabling those with mbc to easily view all viable clinical trials!

    Many thanks!

  • moderators
    moderators Posts: 8,278
    edited October 2015
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    No, we didn't, but we'll take a look and will pass this comments along. Thank you!

  • 3-16-2011
    3-16-2011 Member Posts: 279
    edited October 2015
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    First thank you so much for this resource. My. MO only chrecks for trials at my cancer center. Knowing all that could be avaiable is important to me.

    best bird has some awesome comments from her expertise!

    I have no expertise but would like to add a wish list that may or may not be do able.

    You ask for zipcode but infformation is not organized in any way related to geography. And at times it is difficult to find where the study is being preformed.

    I would like a key word search if possible in which we could search by things like brca, parb inhibitor, etc.

    Thank you again for efforts in creatibg this

  • bestbird
    bestbird Member Posts: 232
    edited November 2015
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    nancyh, in walking through the issues with the Metastatic Trial Search development team, indeed you were right about the exclusion criteria! The team is still working on a few items that will be available in another release.

    I was impressed with the team's receptivity and desire to create a perfect tool!

  • My-sister
    My-sister Member Posts: 1
    edited November 2015
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    Hello,

    I would like to know how my sister can benefit from these trials, her oncologist did not recommended them to her as they could be expensive?

  • bevin
    bevin Member Posts: 519
    edited November 2015
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    Hoping someone comes along for some input on your query soon. Good luck with your sister. Praying you can find a path to control her mets.

    There is also a stage 4 brain mets forum on this site where lots of information is shared.

  • bestbird
    bestbird Member Posts: 232
    edited November 2015
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    Normally the clinical trial drugs are free.  My understanding is that the patient pays for any travel and accommodation if they need to obtain the drug out of town.  It would be good to check who pays for scans and tests.  Good luck!


  • Artista928
    Artista928 Member Posts: 1,458
    edited November 2015
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    I guess I'm not clear. Is this in addition to getting your recommended therapy or do you stop that and choose clinical trial? Because it you don't stop your tx, then how can they tell if it's the clinical trial that worked or the tx you are on?

  • stagefree
    stagefree Member Posts: 360
    edited November 2015
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    Dear Mods,

    the word 'new' means 'hope' in Mbcland. Thanks for your efforts.

    Love

    Ebru

  • letmywifelive
    letmywifelive Member Posts: 303
    edited March 2016
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    Any ideas which of the clinical trials prolong life significantly - in terms of years ?

  • bestbird
    bestbird Member Posts: 232
    edited March 2016
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    Each person responds differently to a specific therapy. One person may do well for years on a protocol while another person with the same cancer profile who is on the exact same protocol may have no therapeutic response whatsoever. This represents one of the most challenging and heartbreaking dilemmas facing those with mbc and their loved ones.

  • bestbird
    bestbird Member Posts: 232
    edited March 2016
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    There are a few issues with the tool that are still being worked on, so please follow the instructions below for using the tool to bypass the issues.

    After launching the tool, please enter information only in the following sections. Entering any additional information may skew the results

    Information to be entered (enter nothing else but this):

    • Year of Birth
    • Female or Male
    • Pre-menopausal or Post-menopausal (presented if "Female" was selected above)
    • Breast cancer type


  • letmywifelive
    letmywifelive Member Posts: 303
    edited March 2016
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    Very promising research on delivering chemo successfully to brain (overcoming blood - brain barrier)

    http://www.thedailybeast.com/articles/2015/11/10/p...


  • JimmieBell
    JimmieBell Member Posts: 59
    edited April 2016
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    Great opportunity.

    My oncologist is doing a clinical trial in San Antonio. She's not allowed to advertise and has been unable to fill just one vacancy, so I am helping get the word out.

    The patient must be triple negative (ER- & HER2-) metastatic breast cancer and this has to be the first treatment (since reoccurrence). The drug is the same immunotherapy drug that Jimmy Carter took (pembrolizumab) with or without a chemotherapy agent. Plus the study is phase III, so not nearly as risky. If you, or someone you know meets the criteria, just PM me and I'll put you in touch. I'm going to look up the clinical trial and put it in the comments if I can. Sure hope we find a candidate. This research helps us all.