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Topic: Metastatic Breast Cancer Trial Search

Forum: Stage IV/Metastatic Breast Cancer ONLY —

A place for those managing the ups & downs of a Stage IV/metastatic breast cancer diagnosis. Please respect that this forum is for Stage IV members only. There is a separate forum For Family and Caregivers of People with a STAGE IV Diagnosis.

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Posted on: Sep 24, 2015 11:00AM - edited Jul 17, 2020 03:08PM by Moderators

Moderators wrote:

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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Sep 24, 2015 11:41AM 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.

Stay-at-home mom to 13-yo daughter and 11-yo son. stage iv, node and bone mets; 03/2013 liver mets; 05/2016 brain mets; hospice care. Dx 4/22/2008, IDC, Left, 2cm, Stage IIB, Grade 3, 1/11 nodes, ER+/PR+, HER2- Chemotherapy 6/14/2008 AC + T (Taxol) Hormonal Therapy 11/1/2008 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Dx 3/14/2012, IDC, Stage IV, metastasized to bone, mets Chemotherapy 8/14/2013 Xeloda (capecitabine) Chemotherapy 7/21/2014 Carboplatin (Paraplatin), Taxol (paclitaxel) Dx 11/3/2015, ILC, Right, 6cm+, ER+/PR-, HER2+ (FISH) Targeted Therapy 11/27/2015 Herceptin (trastuzumab) Chemotherapy 11/27/2015 Gemzar (gemcitabine)
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Sep 24, 2015 03:26PM Moderators wrote:

kebab, thanks for the feedback. We really hope that the tool can help some people!

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Sep 24, 2015 03:45PM 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.

"Once more into the fray... Into the last good fight I'll ever know... Live and die on this day... Live and die on this day." - The Grey
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Sep 24, 2015 04:18PM Moderators wrote:

Really great feedback, leggo! Thanks for sharing!

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Sep 24, 2015 06:21PM 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.

Original dx Stage IIIc, July 2011; bone mets, December 2013; liver mets, May 2014. Treatments: Mast (Rt), ACT Chemo, Radiation, Tamoxifen, Faslodex/Zometa, Xeloda/Zometa, Halaven/Zometa, Ixempra/Zometa Dx 7/27/2011, IDC, 3cm, Stage IIIC, Grade 2, 28/28 nodes, mets, ER+/PR+, HER2-
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Sep 24, 2015 06:22PM LindaE54 wrote:

Ditto what Leggo said. I'm also in Canada. Thank you Mods.

Linda - dx at 54. Decision to stop all treatments on 9 Jan 2018 Dx 11/26/2013, IDC, Left, 1cm, Stage IV, metastasized to bone/liver/other, Grade 3, mets, ER+/PR+, HER2- Radiation Therapy 12/18/2013 External: Bone Hormonal Therapy 12/29/2013 Femara (letrozole) Hormonal Therapy 5/27/2014 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Radiation Therapy 5/28/2014 External: Bone Radiation Therapy 8/27/2014 External: Bone Hormonal Therapy 9/24/2014 Femara (letrozole) Radiation Therapy 12/13/2014 External: Bone Hormonal Therapy 2/16/2017 Faslodex (fulvestrant) Chemotherapy 5/14/2017 Taxol (paclitaxel) Radiation Therapy 6/4/2017 External: Bone Chemotherapy 10/2/2017 Ellence (epirubicin) Chemotherapy 10/22/2017 CEF Chemotherapy 12/27/2017 Halaven (eribulin)
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Sep 24, 2015 08:36PM 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!

Stage 4 in 2009, mets to liver, lungs, bones, and brain. Dx 8/12/2002, IDC, 1cm, Stage IIB, 3/12 nodes, ER+/PR+, HER2- Chemotherapy 10/1/2002 AC Chemotherapy 1/1/2003 Taxol (paclitaxel) Hormonal Therapy 5/1/2003 Dx 4/2/2007, IDC, 1cm, Stage II, ER+/PR+, HER2- Chemotherapy 6/1/2007 CMF Dx 9/1/2009, IDC, Stage IV, metastasized to brain/bone/liver/lungs, mets, ER+/PR+, HER2- Targeted Therapy 9/1/2009 Avastin (bevacizumab) Chemotherapy 9/1/2009 Abraxane (albumin-bound or nab-paclitaxel) Hormonal Therapy 6/1/2010 Femara (letrozole) Chemotherapy 9/1/2011 Xeloda (capecitabine) Hormonal Therapy 1/1/2012 Faslodex (fulvestrant) Chemotherapy 6/1/2012 Navelbine (vinorelbine) Chemotherapy 5/1/2013 Gemzar (gemcitabine) Hormonal Therapy 6/1/2013 Aromasin (exemestane) Targeted Therapy 8/1/2013 Afinitor (everolimus) Chemotherapy 10/28/2013 Halaven (eribulin) Chemotherapy 11/12/2014 Taxotere (docetaxel) Chemotherapy 10/1/2015 Adriamycin (doxorubicin) Targeted Therapy Ibrance (palbociclib)
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Oct 2, 2015 02:30PM NYCchutzpah wrote:

Thanks Mods I have to discuss this with my oncologist I am so fortunate to be very close to the city/

Dx 12/27/2011, Stage IV, mets, ER+ Radiation Therapy 4/9/2012 Breast, Lymph nodes
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Oct 2, 2015 10:41PM 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

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Oct 3, 2015 03:21PM - edited Oct 3, 2015 03:29PM by Bestbird

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.

Dx 10/6/2011, IDC, Left, Stage IV, ER+/PR+, HER2-
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Oct 4, 2015 03:42AM KiwiCatMom wrote:

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

Dx 9/25/2006, IDC, 1cm, Stage I, Grade 1, 0/6 nodes, ER+/PR+, HER2- Surgery 10/19/2006 Lumpectomy: Left Hormonal Therapy 12/10/2006 Radiation Therapy 12/15/2006 Breast Dx 2/9/2013, IDC, Stage IV, ER+/PR+, HER2- Hormonal Therapy 2/19/2013 Femara (letrozole) Radiation Therapy 2/19/2013 Bone
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Oct 4, 2015 01:13PM Moderators wrote:

Bestbird and Kiwi, I sent your comments along!!

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Oct 5, 2015 03:08PM Bestbird wrote:

Mods, thank you!

Dx 10/6/2011, IDC, Left, Stage IV, ER+/PR+, HER2-
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Oct 6, 2015 05:59PM nancyh wrote:

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!

Stage 4 in 2009, mets to liver, lungs, bones, and brain. Dx 8/12/2002, IDC, 1cm, Stage IIB, 3/12 nodes, ER+/PR+, HER2- Chemotherapy 10/1/2002 AC Chemotherapy 1/1/2003 Taxol (paclitaxel) Hormonal Therapy 5/1/2003 Dx 4/2/2007, IDC, 1cm, Stage II, ER+/PR+, HER2- Chemotherapy 6/1/2007 CMF Dx 9/1/2009, IDC, Stage IV, metastasized to brain/bone/liver/lungs, mets, ER+/PR+, HER2- Targeted Therapy 9/1/2009 Avastin (bevacizumab) Chemotherapy 9/1/2009 Abraxane (albumin-bound or nab-paclitaxel) Hormonal Therapy 6/1/2010 Femara (letrozole) Chemotherapy 9/1/2011 Xeloda (capecitabine) Hormonal Therapy 1/1/2012 Faslodex (fulvestrant) Chemotherapy 6/1/2012 Navelbine (vinorelbine) Chemotherapy 5/1/2013 Gemzar (gemcitabine) Hormonal Therapy 6/1/2013 Aromasin (exemestane) Targeted Therapy 8/1/2013 Afinitor (everolimus) Chemotherapy 10/28/2013 Halaven (eribulin) Chemotherapy 11/12/2014 Taxotere (docetaxel) Chemotherapy 10/1/2015 Adriamycin (doxorubicin) Targeted Therapy Ibrance (palbociclib)
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Oct 6, 2015 07:21PM 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.

Dx 10/6/2011, IDC, Left, Stage IV, ER+/PR+, HER2-
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Oct 14, 2015 11:39PM Bestbird wrote:

suersis, ain't that the truth! :)

Dx 10/6/2011, IDC, Left, Stage IV, ER+/PR+, HER2-
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Oct 14, 2015 11:41PM 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!

Dx 10/6/2011, IDC, Left, Stage IV, ER+/PR+, HER2-
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Oct 15, 2015 06:25AM Moderators wrote:

No, we didn't, but we'll take a look and will pass this comments along. Thank you!

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Oct 18, 2015 11:52AM 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

3-16-2011 Dx 3/16/2011, IDC, 2cm, Stage IIA, Grade 2, 1/15 nodes, ER+/PR+, HER2- Chemotherapy 5/3/2011 AC + T (Taxol) Surgery 10/18/2011 Prophylactic ovary removal Radiation Therapy 11/10/2011 Surgery 10/10/2012 Reconstruction (left): Free TRAM flap; Reconstruction (right): Free TRAM flap Dx 11/5/2014, Stage IV, ER+/PR+ Hormonal Therapy 1/1/2015 Aromasin (exemestane) Targeted Therapy 10/15/2015 Afinitor (everolimus)
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Nov 2, 2015 11:23AM Bestbird wrote:

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!

Dx 10/6/2011, IDC, Left, Stage IV, ER+/PR+, HER2-
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Nov 12, 2015 04:54PM 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?

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Nov 13, 2015 11:02AM bevin wrote:

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.

Age 45, Oncotype 11, Primary Tumor 2.1 cm, smaller satellite tumor nearby Dx 8/8/2010, IDC, 2cm, Stage II, Grade 3, 0/5 nodes, ER+/PR+, HER2- Surgery 8/10/2010 Lumpectomy: Right; Lymph node removal: Right, Sentinel Radiation Therapy 10/10/2010 Breast
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Nov 15, 2015 10:27AM 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!


Dx 10/6/2011, IDC, Left, Stage IV, ER+/PR+, HER2-
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Nov 15, 2015 12:04PM Artista928 wrote:

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?

Dx'd at 50. Doing it all, all by myself. Stopped Letrozole after 5 weeks. Debilitating se's. Back on Tamox now. Dx 6/2/2015, IDC, Left, 6cm+, Stage IIIA, Grade 3, 1/4 nodes, ER+/PR+, HER2- (DUAL) Surgery 8/6/2015 Lymph node removal: Left, Sentinel; Mastectomy: Left; Prophylactic mastectomy: Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Chemotherapy 11/3/2015 AC + T (Taxotere) Radiation Therapy 5/2/2016 Whole-breast: Breast, Lymph nodes, Chest wall Hormonal Therapy 6/28/2016 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 12/9/2016 Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Hormonal Therapy 2/14/2017 Femara (letrozole) Hormonal Therapy 3/26/2017 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 9/1/2017 Reconstruction (right): Fat grafting, Silicone implant
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Nov 24, 2015 09:26PM stagefree wrote:

Dear Mods,

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

Love

Ebru

Dx 4/9/2012, IDC, Stage IV, Grade 1, mets, ER+/PR-, HER2- Chemotherapy 4/11/2012 Xeloda (capecitabine) Hormonal Therapy 8/24/2012 Hormonal Therapy 6/8/2016 Arimidex (anastrozole), Zoladex (goserelin) Chemotherapy 6/8/2016 Cytoxan (cyclophosphamide), Xeloda (capecitabine)
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Mar 1, 2016 09:05AM letmywifelive wrote:

Any ideas which of the clinical trials prolong life significantly - in terms of years ?

Dx 10/2013, ILC/IDC, Left, Stage IIB, 2/2 nodes, ER+/PR+, HER2- Dx 2/2016, Stage IV, metastasized to bone, ER+/PR+, HER2- Dx 1/2017, Stage IV, metastasized to liver, ER+/PR-, HER2- Radiation Therapy Whole-breast: Breast, Lymph nodes Radiation Therapy External: Bone Chemotherapy AC + T (Taxol) Hormonal Therapy Femara (letrozole) Targeted Therapy Ibrance (palbociclib) Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Chemotherapy Xeloda (capecitabine) Chemotherapy Halaven (eribulin)
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Mar 3, 2016 02:30PM - edited Mar 3, 2016 03:32PM 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.

Dx 10/6/2011, IDC, Left, Stage IV, ER+/PR+, HER2-
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Mar 18, 2016 06:27PM Bestbird wrote:

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


Dx 10/6/2011, IDC, Left, Stage IV, ER+/PR+, HER2-
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Mar 23, 2016 07:18AM letmywifelive wrote:

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

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


Dx 10/2013, ILC/IDC, Left, Stage IIB, 2/2 nodes, ER+/PR+, HER2- Dx 2/2016, Stage IV, metastasized to bone, ER+/PR+, HER2- Dx 1/2017, Stage IV, metastasized to liver, ER+/PR-, HER2- Radiation Therapy Whole-breast: Breast, Lymph nodes Radiation Therapy External: Bone Chemotherapy AC + T (Taxol) Hormonal Therapy Femara (letrozole) Targeted Therapy Ibrance (palbociclib) Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Chemotherapy Xeloda (capecitabine) Chemotherapy Halaven (eribulin)
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Apr 22, 2016 06:24PM JimmieBell wrote:

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.

Dx 2008, LCIS, Stage 0, 0/0 nodes Dx 12/2012, ILC, 2cm, Stage IV, Grade 1, 0/2 nodes, mets, ER+/PR+, HER2- Surgery 1/9/2013 Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Dx 4/17/2013, ILC, 3cm, Stage IV, Grade 1, ER+/PR+, HER2- Targeted Therapy 4/25/2013 Avastin (bevacizumab) Chemotherapy 4/25/2013 Taxol (paclitaxel) Targeted Therapy 2/28/2014 Afinitor (everolimus)

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