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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 IV or Mets.

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Posted on: Nov 29, 2018 06:40AM

Posted on: Nov 29, 2018 06:40AM

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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Jun 17, 2022 07:18PM nicolerod wrote:

Susan they allow you to do chemo while u wait the 4 months

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 Cryoblation on 2 of 4 tumors in liver. Dec 2019-May 2020 Xeloda Failed May-July 2020 - Doxil Failed Dx 12/19/2014, DCIS, Right, Stage 0, Grade 3, ER+/PR+, HER2- 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; Mastectomy (Left); Mastectomy (Right)
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Jun 17, 2022 11:03PM - edited Jun 17, 2022 11:35PM by cure-ious

Susan, I'm sorry to hear you have to change again! In addition to the NIH Rosenberg trial, I like the TREM2- Keytruda immunotherapy trial. TREM-2 is a monoclonal antibody that gets rid of macrophages that surround many solid tumors and prevent them from responding to immunotherapy. For that reason, this trial is open to ER-positive MBC in addition to TNBC. The trial does not limit prior treatments, but does say you had to have progressed on some prior immunotherapy trial "if indicated for the tumor type", which I think does not apply to us since we don't have other immunotherapy trials open to us. The closest for west coast folks would be OHSU in Portland or Mayo Clinic in Scottsdale AZ.

Update: The trial has been going on for a year, and they presented an abstract at ASCO 2022 (third link below). They treated 28 people with a variety of different cancers types; 15 had TREM-2 antibody alone and only 13 had TREM-2 plus Keytruda. The TREM-2 monoclonal appears to be safe without major SEs. Of these, 11 had a stable response, ranging in duration from 9-42 weeks; 6 subjects with stable disease have now progressed and 5 remain on treatment.

https://clinicaltrials.gov/ct2/show/NCT04691375

https://www.sciencedirect.com/science/article/pii/...

https://meetings.asco.org/abstracts-presentations/...

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Jun 18, 2022 11:45AM gg27 wrote:

Sadiesservant, Honestly I can't remember what the trial drug is targeting. All I remember about that time is all the blood draws over 2 days (I think there about 15+ as they were every hour) and 2 liver biopsies. I'm not even sure I ever had that information but I'm sure you can look it up when the time comes. I think it will be a long time before BC Cancer covers it as the trial is closed.

good luck on Monday. I know how you feel, list of options is getting short for me as well, but MO says we will circle back to things that worked well for me in the past & see if they do anything for me.

Dx 10/2008, IDC, Both breasts, 3cm, Stage IIB, Grade 2, 3/9 nodes, mets, ER+/PR+, HER2- Surgery 1/8/2009 Lymph node removal; Mastectomy; Mastectomy (Left); Mastectomy (Right) Chemotherapy 2/1/2009 Other Radiation Therapy 7/5/2009 Whole breast: Breast, Lymph nodes Dx 5/14/2014, IDC, Both breasts, Stage IV, metastasized to bone/liver/other, 9/20 nodes, mets, ER+/PR+, HER2- Chemotherapy Abraxane (albumin-bound or nab-paclitaxel)
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Jun 18, 2022 12:03PM 50sgirl wrote:

GG, I am glad to see that you are still doing well in the trial, even if you are the lone participant left. I know you don’t post often these days, but it is always good to hear from you.

Sadiesservant, I hope you have good results from Monday’s scans. Do you know how soon you will receive the results? Waiting can be hard.

Lynne


Dx 6/5/2015, ILC/IDC, Left, 3cm, Stage IV, metastasized to bone, ER+/PR+, HER2- Hormonal Therapy 6/9/2015 Arimidex (anastrozole) Dx 8/9/2016, ILC/IDC, Left, 3cm, Stage IV, metastasized to bone/liver/other, ER+/PR+, HER2- Hormonal Therapy 8/10/2016 Faslodex (fulvestrant) Targeted Therapy 8/30/2016 Ibrance (palbociclib) Hormonal Therapy 7/3/2018 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Chemotherapy 10/2/2018 Xeloda (capecitabine) Chemotherapy 2/10/2019 Taxol (paclitaxel) Hormonal Therapy 11/12/2019 Aromasin (exemestane) Targeted Therapy 11/13/2019 Afinitor (everolimus) Hormonal Therapy 12/26/2019 Femara (letrozole) Chemotherapy 3/8/2020 Adriamycin (doxorubicin) Targeted Therapy 2/6/2021 Verzenio Chemotherapy 4/12/2021 Halaven (eribulin) Chemotherapy 9/30/2021 Cytoxan (cyclophosphamide), Methotrexate (Amethopterin, Mexate, Folex) Chemotherapy 2/11/2022 translation missing: en.treatments.chemotherapy.chemotherapy_regimen.options.short_drugs.epithilone.ixempra
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Jun 18, 2022 12:31PM sadiesservant wrote:

Thanks all. My MO is pretty responsive so I imagine I will hear from him as soon as the results are available. It’s elms to be taking a couple of days so I expect Thursday or Friday. Hopefully worrying for nothing. As to circling back, so far only endocrine treatments and Capecitabine have been effective. My MO feels I’m now endocrine resistant but I’m hoping, based on the biopsy results which came back as strongly ER+, that I can squeeze out a couple more hormone based treatments.

Dx 4/2001, IDC, Right, 1cm, Stage IIA, Grade 3, 1/10 nodes, ER+ Surgery 5/10/2001 Lumpectomy; Lumpectomy (Right); Lymph node removal; Lymph node removal (Right): Sentinel, Underarm/Axillary Chemotherapy 6/7/2001 CEF Radiation Therapy 12/17/2001 Whole breast: Breast Hormonal Therapy 12/20/2001 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Hormonal Therapy 1/2/2007 Femara (letrozole) Hormonal Therapy 10/21/2007 Arimidex (anastrozole) Dx 1/3/2017, IDC, Right, Stage IV, metastasized to bone/lungs, ER+/PR+, HER2- Chemotherapy 1/27/2017 Taxol (paclitaxel) Hormonal Therapy 3/28/2017 Arimidex (anastrozole) Targeted Therapy 4/19/2017 Ibrance (palbociclib) Dx 10/12/2017, IDC, Right, Stage IV, metastasized to other Chemotherapy 10/20/2017 Xeloda (capecitabine) Radiation Therapy 11/15/2017 External Local Metastases 11/15/2017 Radiation therapy: Bone Hormonal Therapy 1/18/2018 Faslodex (fulvestrant) Radiation Therapy 8/2/2018 External Local Metastases 8/2/2018 Radiation therapy: Bone Radiation Therapy 11/5/2018 External Local Metastases 11/5/2018 Radiation therapy: Bone Targeted Therapy 10/9/2019 Verzenio Radiation Therapy 11/3/2020 External Local Metastases 11/3/2020 Radiation therapy: Bone Dx 1/22/2021, IDC, Right, 1cm, Stage IV, metastasized to liver, Grade 2, ER+/PR+, HER2- Chemotherapy 2/4/2021 Xeloda (capecitabine) Chemotherapy 10/8/2021 Other Chemotherapy 1/7/2022 Other
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Jun 19, 2022 12:27PM susaninsf wrote:

rosie24,

Is this a variant of ADC Therapeutic's earlier drug, ADCT-502? That trial was terminated due to high toxicity. Hopefully, they went back to the drawing board after learning something from that trial.

Please keep us informed of how it is going. Hope you do well on it!

Hugs, Susan

Mets to brain, lung, liver, eye, femur bone. Dx 2000, DCIS, <1cm, Stage 0, Grade 3, 0/2 nodes, ER+/PR+, HER2- Surgery 8/31/2000 Lumpectomy; Lumpectomy (Left); Lumpectomy (Right); Lymph node removal; 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; Mastectomy (Right) Dx 3/29/2014, DCIS, Left, 4cm, Stage IV, metastasized to brain/bone/lungs/other, mets, ER+/PR-, HER2- Hormonal Therapy 3/31/2014 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Radiation Therapy 4/28/2014 External Local Metastases 4/28/2014 Brain Chemotherapy 10/30/2014 Xeloda (capecitabine) Radiation Therapy 1/8/2015 External Local Metastases 1/8/2015 Radiation therapy: 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 Local Metastases 11/27/2017 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 Local Metastases 10/23/2019 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 Other Chemotherapy 11/2/2021 Other Targeted Therapy 1/6/2022 Targeted Therapy 6/24/2022 Enhertu (fam-trastuzumab deruxtecan-nxki)
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Jun 19, 2022 01:16PM - edited Jun 21, 2022 07:19AM by rosie24

Thanks for the heads up on the earlier ADCT trial. I don't know if they're related

Edited to add: Susan, I read up on the earlier trial and the same chemo drug will be used in my study, PBD for short. This one is targeting TNMBC, along with some other cancer types. I do hope they've made some progress since 2018 when the earlier trial was stopped. I didn't see whether the antibody was named.

Dx 1/23/2019, DCIS/IDC, Left, 3cm, Stage IV, metastasized to liver, Grade 2, ER+/PR-, HER2- Hormonal Therapy 1/23/2019 Femara (letrozole) Targeted Therapy 1/24/2019 Ibrance (palbociclib) Surgery 12/3/2019 Lumpectomy; Lumpectomy (Left) Surgery 12/3/2019 Lymph node removal Radiation Therapy 3/17/2020 Whole breast Dx IDC/DCIS, ER-/PR-, HER2-
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Jun 20, 2022 09:59AM susaninsf wrote:

Cure-ious,

Thanks for the advice on PY314! Portland, OR is a plane ride away but not too far. I had it on my list of promising trials but ranked lower down because there is no CA site. I may be able to get on Enhertu soon but will talk to my MO about PY314.

Hugs, Susan

Mets to brain, lung, liver, eye, femur bone. Dx 2000, DCIS, <1cm, Stage 0, Grade 3, 0/2 nodes, ER+/PR+, HER2- Surgery 8/31/2000 Lumpectomy; Lumpectomy (Left); Lumpectomy (Right); Lymph node removal; 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; Mastectomy (Right) Dx 3/29/2014, DCIS, Left, 4cm, Stage IV, metastasized to brain/bone/lungs/other, mets, ER+/PR-, HER2- Hormonal Therapy 3/31/2014 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Radiation Therapy 4/28/2014 External Local Metastases 4/28/2014 Brain Chemotherapy 10/30/2014 Xeloda (capecitabine) Radiation Therapy 1/8/2015 External Local Metastases 1/8/2015 Radiation therapy: 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 Local Metastases 11/27/2017 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 Local Metastases 10/23/2019 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 Other Chemotherapy 11/2/2021 Other Targeted Therapy 1/6/2022 Targeted Therapy 6/24/2022 Enhertu (fam-trastuzumab deruxtecan-nxki)
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Jun 20, 2022 12:34PM bevjen wrote:

Susan,

My doc is trying to get approval for compassionate use or off label on enhertu. So confident is she that I've got my first infusion scheduled. I have two Erbb2 mutations but show up as HER2 0. Just a thought.

Microwave Ablations of the Liver: 7/2019; 10/2020; 12/2020 Radiation Therapy for Bone Mets to Femur (Both sides) April 2021 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 7/4/2019 Targeted Therapy 7/31/2019 Ibrance (palbociclib) Immunotherapy Radiation Therapy Surgery Lymph node removal; Lymph node removal (Left): Sentinel; Mastectomy; Mastectomy (Left); Mastectomy (Right); Reconstruction (Left): Pedicled TRAM flap; Reconstruction (Right): Pedicled TRAM flap Chemotherapy TAC Hormonal Therapy Faslodex (fulvestrant) 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 Femara (letrozole)
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Jun 20, 2022 01:27PM susaninsf wrote:

Bevjen,

Appreciate your information. I feel pretty confident she can get it done. She got me onto Keytruda and Trodelvy though those were only approved for TNBC. The results are already out that Enhertu works on HER2 low and I am HER2 2+.

Crossing my fingers!

Hugs, Susan

Mets to brain, lung, liver, eye, femur bone. Dx 2000, DCIS, <1cm, Stage 0, Grade 3, 0/2 nodes, ER+/PR+, HER2- Surgery 8/31/2000 Lumpectomy; Lumpectomy (Left); Lumpectomy (Right); Lymph node removal; 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; Mastectomy (Right) Dx 3/29/2014, DCIS, Left, 4cm, Stage IV, metastasized to brain/bone/lungs/other, mets, ER+/PR-, HER2- Hormonal Therapy 3/31/2014 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Radiation Therapy 4/28/2014 External Local Metastases 4/28/2014 Brain Chemotherapy 10/30/2014 Xeloda (capecitabine) Radiation Therapy 1/8/2015 External Local Metastases 1/8/2015 Radiation therapy: 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 Local Metastases 11/27/2017 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 Local Metastases 10/23/2019 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 Other Chemotherapy 11/2/2021 Other Targeted Therapy 1/6/2022 Targeted Therapy 6/24/2022 Enhertu (fam-trastuzumab deruxtecan-nxki)

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