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Topic: Are you currently (or have you been) in a Clinical Trial?

Forum: Stage IV/Metastatic Breast Cancer ONLY —

Please respect that this forum is for members with stage IV/metastatic breast cancer only. There is a separate forum for caregivers and friends: Caring for Someone with Stage 4 or Mets.

Posted on: Nov 29, 2018 07:40AM

Kattysmith wrote:

I am about to start a clinical trial and am wondering about the experiences of others. I'm feeling a little rocky and at sea, because I've been in the care of a wonderful oncologist for the past three years, and I knew without a doubt that his prime objective was the same as mine - to keep me stable and maintain a good quality of life. It was all about me.

Now, I'm embarking on this trial on a different campus and with a different doctor. I really like the doctor who heads it (he is a close colleague of my oncologist and has conferred with him), but I not-so-secretly worry that the prime focus will not be on my well-being, that it will be secondary to the study objectives. My initial meeting with the CO pretty much dispelled my fear that I would be a lab rat, but the closer I get to starting, the more leery I get. I'm normally not anxious about treatments.

I haven't had any treatment at all for several weeks, because the last treatment was ineffective and my onc wanted to get me into a trial, so the waiting hasn't helped. I'm normally pretty chill about everything, including starting new treatments, but entering a clinical trial is a different kettle of fish.

What has been your experience? Have you felt cared for?

First diagnosed borderline Stage 2 IDC, left breast in 2003. No problems until a surprise (!) Stage IV recurrence in 2015! In addition to treatments listed below, I started monthly injections of Xgeva for bone support in July 2016. Dx 10/23/2015, Left, Stage IV, metastasized to other, Grade 3, 0/3 nodes, ER+, HER2- Chemotherapy 11/3/2015 AC Hormonal Therapy 2/4/2016 Femara (letrozole) Targeted Therapy 2/4/2016 Ibrance (palbociclib) Immunotherapy 12/22/2018 Hormonal Therapy Faslodex (fulvestrant)
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Nov 4, 2021 05:32PM SusaninSF wrote:

Cure-ious, Thanks for the validation on the ARX-788 drug. I don't think I read anything about the NRG1 fusion in any of my genomic profiles. I know it is required for the trial at Stanford. Hope said she sent my genomic reports to Stanford so I guess they can figure it out?

Dee, Appreciate your kind words. I don't mind going to LA for treatments so hopefully that will work out.

Hugs, Susan

Mets to brain, lung, liver, eye, femur bone. 1/6/22 started on ARX788 trial. Dx 2000, DCIS, <1cm, Stage 0, Grade 3, 0/2 nodes, ER+/PR+, HER2- Surgery 8/31/2000 Lumpectomy: Left, Right; Lymph node removal: Right, Sentinel; Reconstruction (right) Dx 2008, DCIS, <1cm, Stage 0, Grade 3, 0/2 nodes, ER+/PR+, HER2- Surgery 3/2/2008 Mastectomy: Right Dx 3/29/2014, Stage IV, metastasized to brain/bone/lungs/other, mets, ER+/PR-, HER2- (FISH) Hormonal Therapy 3/31/2014 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Radiation Therapy 4/28/2014 External: Brain Chemotherapy 10/30/2014 Xeloda (capecitabine) Radiation Therapy 1/8/2015 External: Bone Radiation Therapy 6/6/2016 External Hormonal Therapy 11/16/2016 Faslodex (fulvestrant) Targeted Therapy 12/21/2016 Ibrance (palbociclib) Radiation Therapy 11/27/2017 External: Brain Hormonal Therapy 8/21/2018 Femara (letrozole) Targeted Therapy 8/21/2018 Piqray (alpelisib) Chemotherapy 4/23/2019 Taxol (paclitaxel) Chemotherapy 6/19/2019 Abraxane (albumin-bound or nab-paclitaxel) Radiation Therapy 10/23/2019 External: Brain Immunotherapy 10/25/2019 Targeted Therapy 2/18/2020 Trodelvy (sacituzumab govitecan-hziy) Dx 3/8/2021, Stage IV, metastasized to liver Hormonal Therapy 3/12/2021 Aromasin (exemestane) Targeted Therapy 3/16/2021 Verzenio Chemotherapy 9/8/2021 Carboplatin (Paraplatin), Gemzar (gemcitabine) Chemotherapy 11/2/2021 Halaven (eribulin) Radiation Therapy 12/21/2021 External: Bone Targeted Therapy 1/6/2022
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Nov 4, 2021 07:52PM Simone80 wrote:

Susan, I'm so sorry to hear about your progression. I hope you can get into one of the trials you are looking at.

Grannax, I hope you find something that can keep your cancer stable.

Dx 7/2001, IDC, Right, 1cm, Stage IIIA, Grade 3, 7/13 nodes, ER+/PR+, HER2- Dx 1/2019, IDC, 1cm, Stage IV, metastasized to bone/other, ER+/PR+, HER2- (FISH) Targeted Therapy Ibrance (palbociclib) Hormonal Therapy Femara (letrozole)
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Nov 4, 2021 11:33PM SusaninSF wrote:

Thanks Simone! My MO confirmed that I qualify for the trial but won't feel comfortable until I'm actually enrolled. Nervous that it will fill up but she wants to wait until after my 2nd week of chemo next Tuesday so we can have more time since I am off on the 3rd week.

Hugs, Susan

Mets to brain, lung, liver, eye, femur bone. 1/6/22 started on ARX788 trial. Dx 2000, DCIS, <1cm, Stage 0, Grade 3, 0/2 nodes, ER+/PR+, HER2- Surgery 8/31/2000 Lumpectomy: Left, Right; Lymph node removal: Right, Sentinel; Reconstruction (right) Dx 2008, DCIS, <1cm, Stage 0, Grade 3, 0/2 nodes, ER+/PR+, HER2- Surgery 3/2/2008 Mastectomy: Right Dx 3/29/2014, Stage IV, metastasized to brain/bone/lungs/other, mets, ER+/PR-, HER2- (FISH) Hormonal Therapy 3/31/2014 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Radiation Therapy 4/28/2014 External: Brain Chemotherapy 10/30/2014 Xeloda (capecitabine) Radiation Therapy 1/8/2015 External: Bone Radiation Therapy 6/6/2016 External Hormonal Therapy 11/16/2016 Faslodex (fulvestrant) Targeted Therapy 12/21/2016 Ibrance (palbociclib) Radiation Therapy 11/27/2017 External: Brain Hormonal Therapy 8/21/2018 Femara (letrozole) Targeted Therapy 8/21/2018 Piqray (alpelisib) Chemotherapy 4/23/2019 Taxol (paclitaxel) Chemotherapy 6/19/2019 Abraxane (albumin-bound or nab-paclitaxel) Radiation Therapy 10/23/2019 External: Brain Immunotherapy 10/25/2019 Targeted Therapy 2/18/2020 Trodelvy (sacituzumab govitecan-hziy) Dx 3/8/2021, Stage IV, metastasized to liver Hormonal Therapy 3/12/2021 Aromasin (exemestane) Targeted Therapy 3/16/2021 Verzenio Chemotherapy 9/8/2021 Carboplatin (Paraplatin), Gemzar (gemcitabine) Chemotherapy 11/2/2021 Halaven (eribulin) Radiation Therapy 12/21/2021 External: Bone Targeted Therapy 1/6/2022
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Nov 5, 2021 11:06AM - edited Nov 5, 2021 11:13AM by Moissy

NKB- I was in a trial of erdafitinib-an FGFR inhibitor plus Ibrance. There's another trial I'm aware of that accepts bone-only. It’s forTaxol and Radium-223. Previous Taxol treatment is allowed as long as it has been more than two years ago.

Taxol and Radium-223 trial






Dx 2004, IDC, 6cm+, Grade 2, 0/1 nodes, ER+, HER2- Dx 2015, Stage IV, ER+/PR+, HER2-
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Nov 5, 2021 12:02PM Cure-ious wrote:

Susan, NRG1 is a ligand (protein that binds and activates) HER3, so this is the same general signaling pathway as HER2. The Stanford trial inactivates HER3 signaling, which is often turned up when cancer cells escape the HER2 inhibitors. If either/both of these work, the Her2-specific CAR-T could go on your list as well..

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Nov 5, 2021 01:38PM SusaninSF wrote:

Thanks for the explanation, Cure-ious. I am HER2 IHC 2+ equivocal and have ERBB3 gene mutations. My IHC number was technically 2.5 so could be rounded up to positive. Not sure what this all means for NRG1 fusion.

My MO is trying her best to help me but she is so busy and there isn't a resource at UCSF to help us find trials. Does anyone know if there are other resources that can help me do this?


Mets to brain, lung, liver, eye, femur bone. 1/6/22 started on ARX788 trial. Dx 2000, DCIS, <1cm, Stage 0, Grade 3, 0/2 nodes, ER+/PR+, HER2- Surgery 8/31/2000 Lumpectomy: Left, Right; Lymph node removal: Right, Sentinel; Reconstruction (right) Dx 2008, DCIS, <1cm, Stage 0, Grade 3, 0/2 nodes, ER+/PR+, HER2- Surgery 3/2/2008 Mastectomy: Right Dx 3/29/2014, Stage IV, metastasized to brain/bone/lungs/other, mets, ER+/PR-, HER2- (FISH) Hormonal Therapy 3/31/2014 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Radiation Therapy 4/28/2014 External: Brain Chemotherapy 10/30/2014 Xeloda (capecitabine) Radiation Therapy 1/8/2015 External: Bone Radiation Therapy 6/6/2016 External Hormonal Therapy 11/16/2016 Faslodex (fulvestrant) Targeted Therapy 12/21/2016 Ibrance (palbociclib) Radiation Therapy 11/27/2017 External: Brain Hormonal Therapy 8/21/2018 Femara (letrozole) Targeted Therapy 8/21/2018 Piqray (alpelisib) Chemotherapy 4/23/2019 Taxol (paclitaxel) Chemotherapy 6/19/2019 Abraxane (albumin-bound or nab-paclitaxel) Radiation Therapy 10/23/2019 External: Brain Immunotherapy 10/25/2019 Targeted Therapy 2/18/2020 Trodelvy (sacituzumab govitecan-hziy) Dx 3/8/2021, Stage IV, metastasized to liver Hormonal Therapy 3/12/2021 Aromasin (exemestane) Targeted Therapy 3/16/2021 Verzenio Chemotherapy 9/8/2021 Carboplatin (Paraplatin), Gemzar (gemcitabine) Chemotherapy 11/2/2021 Halaven (eribulin) Radiation Therapy 12/21/2021 External: Bone Targeted Therapy 1/6/2022
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Nov 5, 2021 02:18PM - edited Nov 5, 2021 02:19PM by BevJen

Susan,

I haven't found any easy ways to sort through these, but here are a couple of sites that could maybe help you:

https://metastatictrialtalk.org

https://www.metavivor.org/mbc-prep/clinical-trial-search/

https://www.cancerresearch.org/en-us/patients/clin...


I know there are more, but this can give you a start. Of course, you can also sort through clinical trials.gov, but that one is a behemoth and can be very confusing.

Hope this helps even a little bit.

Bev

Microwave Ablations,Liver 3x ;Radiation Therapy to Femur (Both) April 2021; total hip replacement (R) and placement of rod (L) to stabilize femur both sides; immunotherapy (single agent - keytruda) Dx 11/2003, ILC, Left, Stage IIIC, 13/18 nodes, ER+/PR+, HER2- Dx 6/2006, ILC, Stage IV, metastasized to other, ER+, HER2- Dx 5/2019, ILC, Stage IV, metastasized to liver, ER+/PR+, HER2- Surgery 7/5/2019 Targeted Therapy 7/31/2019 Ibrance (palbociclib) Immunotherapy Keytruda (pembrolizumab) Surgery Lymph node removal: Left, Sentinel; Mastectomy: Left, Right; Reconstruction (left): Pedicled TRAM flap; Reconstruction (right): Pedicled TRAM flap Chemotherapy TAC Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery Lymph node removal; Mastectomy; Reconstruction (left): Pedicled TRAM flap; Reconstruction (right): Pedicled TRAM flap Hormonal Therapy Faslodex (fulvestrant) Hormonal Therapy Femara (letrozole) Radiation Therapy
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Nov 6, 2021 01:34AM - edited Nov 6, 2021 01:45AM by SusaninSF

Thanks BevJen! Will check out those sites. I was using MBCConnect but it didn't seem comprehensive. When I've been on trials before they have been at UCSF so all the coordination was taken care of. I don't know how much time it would take to try to get on one on my own.

AlabamaDee, I didn't know that UCSF joined the trial site group. Too bad I don't qualify for that trial since I have been on Xeloda, Abraxane, Trodelvy, Gem/Carbo and now Halaven. Scared

Has anyone tried to get access to a trial drug though the Early Access Program or Right to Try?

Mets to brain, lung, liver, eye, femur bone. 1/6/22 started on ARX788 trial. Dx 2000, DCIS, <1cm, Stage 0, Grade 3, 0/2 nodes, ER+/PR+, HER2- Surgery 8/31/2000 Lumpectomy: Left, Right; Lymph node removal: Right, Sentinel; Reconstruction (right) Dx 2008, DCIS, <1cm, Stage 0, Grade 3, 0/2 nodes, ER+/PR+, HER2- Surgery 3/2/2008 Mastectomy: Right Dx 3/29/2014, Stage IV, metastasized to brain/bone/lungs/other, mets, ER+/PR-, HER2- (FISH) Hormonal Therapy 3/31/2014 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Radiation Therapy 4/28/2014 External: Brain Chemotherapy 10/30/2014 Xeloda (capecitabine) Radiation Therapy 1/8/2015 External: Bone Radiation Therapy 6/6/2016 External Hormonal Therapy 11/16/2016 Faslodex (fulvestrant) Targeted Therapy 12/21/2016 Ibrance (palbociclib) Radiation Therapy 11/27/2017 External: Brain Hormonal Therapy 8/21/2018 Femara (letrozole) Targeted Therapy 8/21/2018 Piqray (alpelisib) Chemotherapy 4/23/2019 Taxol (paclitaxel) Chemotherapy 6/19/2019 Abraxane (albumin-bound or nab-paclitaxel) Radiation Therapy 10/23/2019 External: Brain Immunotherapy 10/25/2019 Targeted Therapy 2/18/2020 Trodelvy (sacituzumab govitecan-hziy) Dx 3/8/2021, Stage IV, metastasized to liver Hormonal Therapy 3/12/2021 Aromasin (exemestane) Targeted Therapy 3/16/2021 Verzenio Chemotherapy 9/8/2021 Carboplatin (Paraplatin), Gemzar (gemcitabine) Chemotherapy 11/2/2021 Halaven (eribulin) Radiation Therapy 12/21/2021 External: Bone Targeted Therapy 1/6/2022
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Nov 7, 2021 09:14AM - edited Nov 7, 2021 09:15AM by Kattysmith

This Post was deleted by Kattysmith.
First diagnosed borderline Stage 2 IDC, left breast in 2003. No problems until a surprise (!) Stage IV recurrence in 2015! In addition to treatments listed below, I started monthly injections of Xgeva for bone support in July 2016. Dx 10/23/2015, Left, Stage IV, metastasized to other, Grade 3, 0/3 nodes, ER+, HER2- Chemotherapy 11/3/2015 AC Hormonal Therapy 2/4/2016 Femara (letrozole) Targeted Therapy 2/4/2016 Ibrance (palbociclib) Immunotherapy 12/22/2018 Hormonal Therapy Faslodex (fulvestrant)
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Nov 7, 2021 09:29AM Kattysmith wrote:

I've been trying to post a link to a new trial that will be opening up by the first of the year, but I must be gaga from the time change because I can't seem to do it It will be open to various types of late-stage cancers including TNBC.

Just Google MEM-288 and you can read all about it as well as follow the links to the trial.

First diagnosed borderline Stage 2 IDC, left breast in 2003. No problems until a surprise (!) Stage IV recurrence in 2015! In addition to treatments listed below, I started monthly injections of Xgeva for bone support in July 2016. Dx 10/23/2015, Left, Stage IV, metastasized to other, Grade 3, 0/3 nodes, ER+, HER2- Chemotherapy 11/3/2015 AC Hormonal Therapy 2/4/2016 Femara (letrozole) Targeted Therapy 2/4/2016 Ibrance (palbociclib) Immunotherapy 12/22/2018 Hormonal Therapy Faslodex (fulvestrant)
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Nov 7, 2021 12:46PM - edited Nov 7, 2021 09:23PM by Husband11

Study of MEM-288 Oncolytic Virus in Solid Tumors Including Non-Small Cell Lung Cancer (NSCLC) - Full Text View - ClinicalTrials.gov


Memgen Announces FDA Clearance of IND Application for MEM-288 | Business Wire

Concerned husband Dx 2008, Left, Stage IIIB, Grade 3, 7/14 nodes, ER+/PR+, HER2- Dx 5/2016, Stage IV, metastasized to liver, ER+/PR+, HER2- Chemotherapy Xeloda (capecitabine) Targeted Therapy Ibrance (palbociclib) Chemotherapy Hormonal Therapy Femara (letrozole)
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Nov 7, 2021 04:11PM BevJen wrote:

Wow, this one looks interesting. If I am reading it correctly, though, the only BC candidates are trip negative.

What caught my eye was the reference to dendritic cells near the beginning -- there was a study that closed maybe a year or two ago regarding dendritic cells (I think these are being looked at more in Europe?) and I wrote to the head person a couple of times, but they didn't have any reports ready.

Very interesting. Thanks Katty and Husband11. I hope this one opens up to more types of BC.

Microwave Ablations,Liver 3x ;Radiation Therapy to Femur (Both) April 2021; total hip replacement (R) and placement of rod (L) to stabilize femur both sides; immunotherapy (single agent - keytruda) Dx 11/2003, ILC, Left, Stage IIIC, 13/18 nodes, ER+/PR+, HER2- Dx 6/2006, ILC, Stage IV, metastasized to other, ER+, HER2- Dx 5/2019, ILC, Stage IV, metastasized to liver, ER+/PR+, HER2- Surgery 7/5/2019 Targeted Therapy 7/31/2019 Ibrance (palbociclib) Immunotherapy Keytruda (pembrolizumab) Surgery Lymph node removal: Left, Sentinel; Mastectomy: Left, Right; Reconstruction (left): Pedicled TRAM flap; Reconstruction (right): Pedicled TRAM flap Chemotherapy TAC Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery Lymph node removal; Mastectomy; Reconstruction (left): Pedicled TRAM flap; Reconstruction (right): Pedicled TRAM flap Hormonal Therapy Faslodex (fulvestrant) Hormonal Therapy Femara (letrozole) Radiation Therapy
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Nov 7, 2021 05:39PM NicoleRod wrote:

Husband that looks great but it says NOT YET RECRUITING????

Dx 12/14 Stage 0, Grade 3, ER+/PR, HER2- (FISH),Dx 04/19, Stage IV mets to bone/liver, Hormonal Therapy 04/19 - 10/19 Ibrance/let/faslodex 10/19 **TNBC AUG 2021 Dec 2019-May 2020 Xeloda Failed May-July 2020 - Doxil Failed Dx 12/19/2014, DCIS, Right, Stage 0, Grade 3, ER+/PR+, HER2- (FISH) Dx 2/5/2019, IDC, Right, Stage IIA, Grade 3, ER+/PR-, HER2- Dx 3/2019, Stage IV, metastasized to bone/liver, Grade 3, ER+/PR-, HER2- Hormonal Therapy 4/28/2019 Surgery Chemotherapy Doxil (doxorubicin) Chemotherapy Xeloda (capecitabine) Radiation Therapy Surgery Mastectomy: Left, Right
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Nov 7, 2021 06:03PM BevJen wrote:

Nicole,

I'd contact the sponsors -- there were a couple listed. See what they say.


Microwave Ablations,Liver 3x ;Radiation Therapy to Femur (Both) April 2021; total hip replacement (R) and placement of rod (L) to stabilize femur both sides; immunotherapy (single agent - keytruda) Dx 11/2003, ILC, Left, Stage IIIC, 13/18 nodes, ER+/PR+, HER2- Dx 6/2006, ILC, Stage IV, metastasized to other, ER+, HER2- Dx 5/2019, ILC, Stage IV, metastasized to liver, ER+/PR+, HER2- Surgery 7/5/2019 Targeted Therapy 7/31/2019 Ibrance (palbociclib) Immunotherapy Keytruda (pembrolizumab) Surgery Lymph node removal: Left, Sentinel; Mastectomy: Left, Right; Reconstruction (left): Pedicled TRAM flap; Reconstruction (right): Pedicled TRAM flap Chemotherapy TAC Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery Lymph node removal; Mastectomy; Reconstruction (left): Pedicled TRAM flap; Reconstruction (right): Pedicled TRAM flap Hormonal Therapy Faslodex (fulvestrant) Hormonal Therapy Femara (letrozole) Radiation Therapy
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Nov 7, 2021 07:41PM NicoleRod wrote:

Bev. I sent the trial to my MO and told her it said not yet recruiting but that it also says it would start Nov 2021...and asked if she thought it would be a good fit for me and could she contact DUKE.... I see its only at Duke and Moffitt (Florida) I am only like 3 and half to 4 hours from Duke its do-able


Dx 12/14 Stage 0, Grade 3, ER+/PR, HER2- (FISH),Dx 04/19, Stage IV mets to bone/liver, Hormonal Therapy 04/19 - 10/19 Ibrance/let/faslodex 10/19 **TNBC AUG 2021 Dec 2019-May 2020 Xeloda Failed May-July 2020 - Doxil Failed Dx 12/19/2014, DCIS, Right, Stage 0, Grade 3, ER+/PR+, HER2- (FISH) Dx 2/5/2019, IDC, Right, Stage IIA, Grade 3, ER+/PR-, HER2- Dx 3/2019, Stage IV, metastasized to bone/liver, Grade 3, ER+/PR-, HER2- Hormonal Therapy 4/28/2019 Surgery Chemotherapy Doxil (doxorubicin) Chemotherapy Xeloda (capecitabine) Radiation Therapy Surgery Mastectomy: Left, Right
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Nov 8, 2021 12:23AM - edited Nov 8, 2021 12:27AM by Cure-ious

That is an exciting trial!; Nicole the press says it opens Dec 31 of this year. But you still might want to wait a bit, this first part is just 18 patients, so should go quickly, and for the next phase they say they would add on immunotherapy.. Also, they say you should have had prior immunotherapy

https://www.businesswire.com/news/home/20211103005...


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Nov 8, 2021 08:34AM NicoleRod wrote:

'curious....im sorry I thought MEM WAS immunotherapy?

Dx 12/14 Stage 0, Grade 3, ER+/PR, HER2- (FISH),Dx 04/19, Stage IV mets to bone/liver, Hormonal Therapy 04/19 - 10/19 Ibrance/let/faslodex 10/19 **TNBC AUG 2021 Dec 2019-May 2020 Xeloda Failed May-July 2020 - Doxil Failed Dx 12/19/2014, DCIS, Right, Stage 0, Grade 3, ER+/PR+, HER2- (FISH) Dx 2/5/2019, IDC, Right, Stage IIA, Grade 3, ER+/PR-, HER2- Dx 3/2019, Stage IV, metastasized to bone/liver, Grade 3, ER+/PR-, HER2- Hormonal Therapy 4/28/2019 Surgery Chemotherapy Doxil (doxorubicin) Chemotherapy Xeloda (capecitabine) Radiation Therapy Surgery Mastectomy: Left, Right
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Nov 8, 2021 12:42PM Husband11 wrote:

"MEM-288 is an oncolytic adenovirus encoding transgenes for human interferon beta (IFNß) and the company's proprietary recombinant chimeric CD40 ligand. MEM-288, armed with Memgen's proprietary CD40 ligand, leverages a validated target that powerfully activates the patient's immune system. The company's proprietary CD40 ligand has been evaluated in earlier clinical studies and demonstrated significant immune activation without the toxicity that had previously prevented development of safe CD40-based therapeutics. Because the CD40 system works as a master "on switch" for the immune system upstream from the immune checkpoint inhibitors, it holds promise in those patients whose disease has progressed despite treatment with immune checkpoint inhibitors."

It is clearly an immune based therapy on its own, but perhaps it might be enhanced by an additional immune based therapy.

Concerned husband Dx 2008, Left, Stage IIIB, Grade 3, 7/14 nodes, ER+/PR+, HER2- Dx 5/2016, Stage IV, metastasized to liver, ER+/PR+, HER2- Chemotherapy Xeloda (capecitabine) Targeted Therapy Ibrance (palbociclib) Chemotherapy Hormonal Therapy Femara (letrozole)
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Nov 8, 2021 02:28PM moth wrote:

NIcole, immunotherapy is a super broad term. It includes all sorts of checkpoint inhibitors as well as immune stimulators.

Their inclusion criteria include "Progressed following therapy with at least one PD-1 or PD-L1 checkpoint inhibitor (regardless of PD-L1 expression status), except for patients with pancreatic cancer" So you'd need to progress on keytruda or tecentriq

Also, they inject the med right into the tumor so it needs to be accessible. It's not an IV med.

super interesting. I'd qualify for it when I progress but I don't know whether I'd be up for it...

https://clinicaltrials.gov/ct2/show/NCT05076760


I take weekends off

Initial dx at 50. Seriously?? “Sometimes the future changes quickly and completely and we’re left with only the choice of what to do next." blog: Never Tell Me the Odds

Dx 12/2017, IDC, Left, 1cm, Stage IA, Grade 3, 0/5 nodes, ER-/PR-, HER2- (IHC) Surgery 12/12/2017 Lumpectomy: Left; Lymph node removal: Sentinel Chemotherapy 2/14/2018 AC + T (Taxol) Radiation Therapy 8/13/2018 Whole-breast: Breast Dx 2/2020, IDC, Stage IV, metastasized to liver/lungs, Grade 3, ER-/PR-, HER2- Chemotherapy 3/18/2020 Taxol (paclitaxel) Immunotherapy 3/19/2020 Tecentriq (atezolizumab) Chemotherapy 11/26/2020 Abraxane (albumin-bound or nab-paclitaxel) Dx 12/9/2020, IDC, Right, Stage IV, metastasized to lungs, Grade 3, PR-, HER2- (IHC) Radiation Therapy 12/9/2020 External: Chest wall Dx 1/28/2021, IDC, Left, Stage IV, metastasized to bone Radiation Therapy 3/3/2021 External: Bone
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Nov 8, 2021 10:26PM KarPC wrote:

That’s an interesting trial. I will be following it since I am triple negative. Gosh, do they inject all your tumors? I have scattered lung nodules - some are under 1cm and would not qualify but if all my lung nodules did qualify would they inject all of them? I am exhausted just thinking about it.🤣

​May 2021 lung nodule flipped from ER+ to triple negative. Liver tumor may still be ER+ Dx 4/2016, IDC, Both breasts, 2cm, Stage IIA, Grade 3, 0/14 nodes, ER+/PR-, HER2- Surgery 5/17/2016 Lymph node removal: Sentinel; Mastectomy: Left, Right; Reconstruction (left); Reconstruction (right) Chemotherapy 6/10/2016 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Hormonal Therapy 10/1/2016 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Dx 2/1/2018, IDC, <1cm, Stage IV, metastasized to liver/lungs, Grade 3, ER+/PR-, HER2- Radiation Therapy 2/2/2018 External: Liver Targeted Therapy 2/16/2018 Ibrance (palbociclib) Hormonal Therapy 2/17/2018 Faslodex (fulvestrant), Femara (letrozole), Zoladex (goserelin) Chemotherapy 2/19/2020 Xeloda (capecitabine) Targeted Therapy 10/14/2020 Afinitor (everolimus) Targeted Therapy 6/1/2021 Piqray (alpelisib)
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Nov 10, 2021 12:36AM - edited Nov 10, 2021 12:55AM by Cure-ious

A couple of exciting new papers!

1) A new Nature paper identifies a gene, DDR1, that acts in TNBC to protect the cancer cells from the immune system. Knockdown or inactivation of DDR1, or a DDR1-specific monoclonal antibody developed by the authors, greatly increases killing of TNBC by T cells.

https://www.sciencedaily.com/releases/2021/11/2111...

this paper extends earlier findings that show that DDR1 is over-expressed in many breast cancers, not just TNBC, and that inhibition of anti-DDR1 antibodies increase T cell infiltration and response to checkpoint immunotherapy.

https://www.spandidos-publications.com/10.3892/or....

https://pubmed.ncbi.nlm.nih.gov/30801016/

*It is interesting to consider that cancers which have mutated from ER-positive to ER-negative become much more accessible to killing by the immune system, and the reason is unknown. Perhaps these cells have mutated or lost expression of DDR1?

2) In unrelated work, another group found that PI3KCA-mutant ER-positive breast cancers can be effectively treated with CDK4,6 inhibitors if they are used in combination with a DDR1 inhibitor.

https://www.nature.com/articles/s41388-021-01819-0

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Nov 10, 2021 01:05AM Cure-ious wrote:

A few days ago, the biotech Parthenon, who are collaborators of the authors of the Nature paper described above, announced they have raised 65M funding to pursue the development of PRTH-101, a DDR1 inhibitor. They say DDR1 forms a "barbed-wire-like" structure around breast and other cancers, protecting them from immune system attack, so the goal is to disable this physical barrier to enable T cells to get in...

https://endpts.com/can-new-drugs-punch-holes-in-ca...

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Nov 10, 2021 05:22AM - edited Nov 10, 2021 06:13AM by NicoleRod

Is it just me??? I have been doing research about PARP inhibitors for TNBC and I see 2 available..HOWEVER, from what I "think" I am understanding is that our MO's can only prescribe this IF we have the BRACA GENE!!!!! So really in order to get a PARP inhibitor if we don't have that gene (I don't) and are TN we need to get into a trial ... is this correct? Cross Posting

ALSO regarding the MEM trial...if they are injecting the tumors directly how does that work with bone mets???

Dx 12/14 Stage 0, Grade 3, ER+/PR, HER2- (FISH),Dx 04/19, Stage IV mets to bone/liver, Hormonal Therapy 04/19 - 10/19 Ibrance/let/faslodex 10/19 **TNBC AUG 2021 Dec 2019-May 2020 Xeloda Failed May-July 2020 - Doxil Failed Dx 12/19/2014, DCIS, Right, Stage 0, Grade 3, ER+/PR+, HER2- (FISH) Dx 2/5/2019, IDC, Right, Stage IIA, Grade 3, ER+/PR-, HER2- Dx 3/2019, Stage IV, metastasized to bone/liver, Grade 3, ER+/PR-, HER2- Hormonal Therapy 4/28/2019 Surgery Chemotherapy Doxil (doxorubicin) Chemotherapy Xeloda (capecitabine) Radiation Therapy Surgery Mastectomy: Left, Right
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Nov 10, 2021 08:40AM NicoleRod wrote:

FOR THOSE INTERESTED IN PARP INHIBITORS INFO (LIKE I WAS) i got a GREAT easy to read explination in a FB group...

PARP inhibitors are targeted therapy for BRCA1/2 mutated patients. BRCA can be a germline (hereditary) DNA mutation, or it can be somatic (acquired), which means it's not in a person's DNA, it's only found in the DNA of the cancer cells. The reason for not using PARP inhibitors for those who are BRCA-negative is because it if the DNA damage repair gene (BRCA) is functioning properly, the targeted therapy would likely not work for that person. In other words, there's no need to repair something that isn't broken (BRCA works properly, not mutated). I know this is a long explanation. So, if you do not have a BRCA mutation (germline or somatic), exposing you to a PARP inhibitor would likely not stop your cancer from growing/spreading. It would be a treatment failure that potentially allows your cancer to progress.Using an everyday repair analogy - if your car stopped running because the motor was broken, replacing your tires wouldn't "fix" the broken motor. Even if your tires aren't in good shape, replacing them won't get the motor running. Using a PARP inhibitor for someone who doesn't have a "broken" DNA repair gene (BRCA 1/2) would likely not kill their cancer, because BRCA mutation is not what's fueling the growth, or allowing the cancer cells to continue living.Dana Farber does these cute little science videos, this one explains how PARP inhibitors work. The video is embedded in this article: https://blog.dana-farber.org/.../how-do-parp-inhibitors.../

Dx 12/14 Stage 0, Grade 3, ER+/PR, HER2- (FISH),Dx 04/19, Stage IV mets to bone/liver, Hormonal Therapy 04/19 - 10/19 Ibrance/let/faslodex 10/19 **TNBC AUG 2021 Dec 2019-May 2020 Xeloda Failed May-July 2020 - Doxil Failed Dx 12/19/2014, DCIS, Right, Stage 0, Grade 3, ER+/PR+, HER2- (FISH) Dx 2/5/2019, IDC, Right, Stage IIA, Grade 3, ER+/PR-, HER2- Dx 3/2019, Stage IV, metastasized to bone/liver, Grade 3, ER+/PR-, HER2- Hormonal Therapy 4/28/2019 Surgery Chemotherapy Doxil (doxorubicin) Chemotherapy Xeloda (capecitabine) Radiation Therapy Surgery Mastectomy: Left, Right
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Nov 10, 2021 10:17AM Piggy99 wrote:

Nicole, that is generally correct, but BRCA is not the only DNA repair gene out there, so you don’t have to have a BRCA mutation to be potentially sensitive to PARP inhibitors. CHEK2 mutations are believed to be similar to BRCA mutations with respect to PARP inhibitors, and Lynparza (olaparib) is already approved for CHEK2 mutant prostate cancer. Not yet approved for breast, but there is a trial for the newer, better PARPi talazoparib open to CHEK2 mutant breast cancer NCT02401347: TalazoparibBeyond BRCA (TBB) Trial.

Diagnosed as Stage IV de novo at age 42. Dx 1/23/2018, ILC/IDC, Left, 6cm+, Stage IV, metastasized to bone, Grade 2, ER+/PR+, HER2- Hormonal Therapy 1/31/2018 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Targeted Therapy 2/8/2018 Ibrance (palbociclib) Hormonal Therapy 3/31/2018 Femara (letrozole)
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Nov 10, 2021 11:34AM NicoleRod wrote:

Piggy thanks..too bad that trial is only in CA....


Dx 12/14 Stage 0, Grade 3, ER+/PR, HER2- (FISH),Dx 04/19, Stage IV mets to bone/liver, Hormonal Therapy 04/19 - 10/19 Ibrance/let/faslodex 10/19 **TNBC AUG 2021 Dec 2019-May 2020 Xeloda Failed May-July 2020 - Doxil Failed Dx 12/19/2014, DCIS, Right, Stage 0, Grade 3, ER+/PR+, HER2- (FISH) Dx 2/5/2019, IDC, Right, Stage IIA, Grade 3, ER+/PR-, HER2- Dx 3/2019, Stage IV, metastasized to bone/liver, Grade 3, ER+/PR-, HER2- Hormonal Therapy 4/28/2019 Surgery Chemotherapy Doxil (doxorubicin) Chemotherapy Xeloda (capecitabine) Radiation Therapy Surgery Mastectomy: Left, Right
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Nov 10, 2021 02:58PM NicoleRod wrote:

Dee you are so informed and on the ball..gosh I feel so inadequate.....anyway I don't remember if you said but I am assuming with new biopsy your cancer is still neuroendocrine?

Dx 12/14 Stage 0, Grade 3, ER+/PR, HER2- (FISH),Dx 04/19, Stage IV mets to bone/liver, Hormonal Therapy 04/19 - 10/19 Ibrance/let/faslodex 10/19 **TNBC AUG 2021 Dec 2019-May 2020 Xeloda Failed May-July 2020 - Doxil Failed Dx 12/19/2014, DCIS, Right, Stage 0, Grade 3, ER+/PR+, HER2- (FISH) Dx 2/5/2019, IDC, Right, Stage IIA, Grade 3, ER+/PR-, HER2- Dx 3/2019, Stage IV, metastasized to bone/liver, Grade 3, ER+/PR-, HER2- Hormonal Therapy 4/28/2019 Surgery Chemotherapy Doxil (doxorubicin) Chemotherapy Xeloda (capecitabine) Radiation Therapy Surgery Mastectomy: Left, Right
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Nov 10, 2021 03:10PM SusaninSF wrote:

AlabamaDee,

I am in a similar place to you and doing everything I can to try to calm the anxiety: yoga, dance, acupuncture, qi gong, massage, seeing a regular talk therapist and a specialized onco psychologist. I also started taking a low dose of 7.5 mgs of Remeron, an anti-depressant. I take Gabapentin and cough syrup with Codeine for my persistent cough at night. All three meds have helped me to sleep which makes a big difference. I feel that I have made a lot of progress in trying to stay positive despite the very scary prospects. But I can't completely get rid of the anxiety all of the time.

I am on Halaven now. It is very tolerable but I know it is the last-resort FDA-approved treatment. I have high hopes to get on the ARX-788 trial at USC. My MO is working on it.

My biggest bright light is that my bloodwork and vitals continue to be good despite my progression, weakness, and shortness of breath. I believe that my body can perform miracles if I give it the proper love and care. I was recently introduced to an amazing acupuncturist who restricted my diet: no dairy, no red chili, no sweets, no fried or greasy food, no alcohol, tea, or coffee. Altogether, I have a top-notch team of alternative and Western medicine practitioners. I will do what I need to do to give my body the support it needs. I am also lucky to have the incredible support of friends and family.

I am grateful to have lived this long with the extensive list of mets I had at my original Stage IV diagnosis. And that for most of these 7+ years I have had a high quality of life. I am grateful that I'm mobile and not in pain. But I want more. I want to be here to support my husband and kids. I want to be here because I love my life.

I hope that you and I and the other wonderful and kind people on this board live long enough to see new and better treatments, perhaps even a cure.

Big hugs, Susan


Mets to brain, lung, liver, eye, femur bone. 1/6/22 started on ARX788 trial. Dx 2000, DCIS, <1cm, Stage 0, Grade 3, 0/2 nodes, ER+/PR+, HER2- Surgery 8/31/2000 Lumpectomy: Left, Right; Lymph node removal: Right, Sentinel; Reconstruction (right) Dx 2008, DCIS, <1cm, Stage 0, Grade 3, 0/2 nodes, ER+/PR+, HER2- Surgery 3/2/2008 Mastectomy: Right Dx 3/29/2014, Stage IV, metastasized to brain/bone/lungs/other, mets, ER+/PR-, HER2- (FISH) Hormonal Therapy 3/31/2014 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Radiation Therapy 4/28/2014 External: Brain Chemotherapy 10/30/2014 Xeloda (capecitabine) Radiation Therapy 1/8/2015 External: Bone Radiation Therapy 6/6/2016 External Hormonal Therapy 11/16/2016 Faslodex (fulvestrant) Targeted Therapy 12/21/2016 Ibrance (palbociclib) Radiation Therapy 11/27/2017 External: Brain Hormonal Therapy 8/21/2018 Femara (letrozole) Targeted Therapy 8/21/2018 Piqray (alpelisib) Chemotherapy 4/23/2019 Taxol (paclitaxel) Chemotherapy 6/19/2019 Abraxane (albumin-bound or nab-paclitaxel) Radiation Therapy 10/23/2019 External: Brain Immunotherapy 10/25/2019 Targeted Therapy 2/18/2020 Trodelvy (sacituzumab govitecan-hziy) Dx 3/8/2021, Stage IV, metastasized to liver Hormonal Therapy 3/12/2021 Aromasin (exemestane) Targeted Therapy 3/16/2021 Verzenio Chemotherapy 9/8/2021 Carboplatin (Paraplatin), Gemzar (gemcitabine) Chemotherapy 11/2/2021 Halaven (eribulin) Radiation Therapy 12/21/2021 External: Bone Targeted Therapy 1/6/2022
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Nov 10, 2021 05:59PM NinaCA wrote:

Beautiful thoughts Susan. I too see "last resort chemo" looming in the distance but I have been blessed with feeling okay and being able to extend life as long as I have. I sing with 2 sweet Adeline choruses and keep up my energy and focus that way. I ask Alexa to play dance music to make me start moving in the morning. I Hope to get a new dog soon to keep me walking, an 8 year old rescue, mine passed a away in Sept. Hugs, Nina

Dx 2/1998, IDC, Left, 5cm, Stage IIIA, ER+/PR+, HER2- Dx 1/2003, Stage IV, metastasized to liver, ER+/PR+, HER2- Dx 7/2015, Stage IV, metastasized to liver, ER+/PR+, HER2- (FISH) Dx 1/2020, ILC/IDC, Stage IV, metastasized to liver/other, ER+, HER2- (FISH) Hormonal Therapy Faslodex (fulvestrant) Targeted Therapy Ibrance (palbociclib) Chemotherapy Xeloda (capecitabine) Surgery Surgery
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Nov 10, 2021 06:01PM Cure-ious wrote:

For the trial Dee was on, ARV-471, the company has said it is winding down and results will be presented in San Antonio. Pfizer (maker of Ibrance) is moving it forward, the plans are to have three clinical trials start in 2022; 1) phase 3, ARV-471 alone or with Ibrance; 2) phase 1b, ARV-471 with everolimus and potentially in other combinations; 3) phase 1 neo-adjuvant, hoping to move it to early stage

THANKS, DEE!!!! Hoping you find the next big drug in whatever trial comes next...

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