Topic: Metastatic Breast Cancer Trial Search

Sep 24, 2015 10:41AM kebab wrote:

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.

Sep 24, 2015 02:45PM leggo wrote:

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.

Sep 24, 2015 05:21PM GemStateGirl wrote:

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.

Sep 24, 2015 07:36PM nancyh wrote:

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!

Oct 2, 2015 09:41PM Nanita_daughter wrote:

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

Oct 4, 2015 02:42AM KiwiCatMom wrote:

Page won't load here in New Zealand. :(

Oct 5, 2015 02:08PM Bestbird wrote:

Mods, thank you!

Oct 6, 2015 06:21PM Bestbird wrote:

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.

Oct 14, 2015 10:41PM Bestbird wrote:

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!

Oct 18, 2015 10:52AM 3-16-2011 wrote:

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

Nov 12, 2015 03:54PM My-sister wrote:

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?

Nov 15, 2015 09:27AM Bestbird wrote:

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!

Nov 24, 2015 08:26PM stagefree wrote:

Dear Mods,

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

Love

Ebru

Mar 3, 2016 01:30PM - edited Mar 3, 2016 02:32PM by Bestbird

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.

Mar 23, 2016 06:18AM letmywifelive wrote:

Very promising research on delivering chemo successfully to brain (overcoming blood - brain barrier)

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