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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 07:40AM

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 11/4/2015 AC Hormonal Therapy 2/5/2016 Femara (letrozole) Targeted Therapy 2/5/2016 Ibrance (palbociclib) Immunotherapy 12/23/2018 Hormonal Therapy Faslodex (fulvestrant)
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May 20, 2022 04:59PM susaninsf wrote:

pnw,

I'm on my fourth trial (Ibrance, Piqray, Trodelvy, ARX-788) and the documentation, scan frequency, etc. required are all similar to what you described for ARV-471. I haven't any problems with my insurance paying for the extra scans and tests. Insurance doesn't have to pay for the drug so I think they come out ahead. In any case, that's what insurance is for!

One of the benefits of being on a trial is that they assign a trial coordinator to schedule everything for you and you get priority in scheduling. The main reason, for me, is to get early access to great new treatments. At this point, I'm down to old-school chemos or Phase I trials. Every trial I've been on has worked well and the first three were all eventually approved.

Looks like you are in the early stages of your MBC diagnosis so trials may not make sense for you. But keep in mind that a lot of trials exclude patients with prior chemo treatments (including ADCs) so you can plan ahead.

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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May 20, 2022 08:36PM gg27 wrote:

PNW,

Like Susan, I've been on 4 drug trials & they almost all have these crazy tests which take days of waiting around. The one I'm on right now req'd blood tests every hour for 14 hours the first 2 days. Because I'm in Canada I don't have the insurance issues but it does take a lot out of you. I have been able get access to drugs that I wouldn't have been able to get otherwise. I was on the Ibrance trial which worked for me for 30 months & it was my second or third line which isn't allowed here, first line only.

I've done trials throughout the 8 years that I've had mets. If a line fails me, my MO looks for a trial to extend the number of lines which will be available to me. good luck

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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May 21, 2022 09:46AM spouse4life wrote:

Like Husband, my wife is also taking 9 mg of Enobosarm daily. I too am not convinced it has done much to reduce the disease ,as her tumor markers continue to rise; however, she has had no side effects and she feels pretty darn awesome on it.

I can also say with certainty that VERU (the company trying to bring enobosarm to market) is not shutting down. In fact, they have a microtubule inhibitor they are also studying for breast cancer. The recruitment for that study seems to be on pause...but only because that same drug just had a phase 3 trial for severe covid end early at the request of an independent panel...as it was working too well compared to treatment as usual. It seemingly worked so well, the FDA has suggested they file for an emergency use authorization to bring to market quickly. I suspect as a small company...most of theeir manpower has been diverted to this.

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May 22, 2022 10:00PM mikainsb wrote:

I am on ARV-471. It isn't working for me. I am on the hunt for something new.

A word about trial protocols: Yeah, they are a pain in the ass. But, I was on a trial drug (H3B-6545) for 15 months with virtually no side affects. I was literally hiking 30 miles a week. The first month or two you feel like you are constantly at the doctors (CTs, MRIs, blood work, EKGs... omg it is a full time job) but you get to a point where you might be on a drug that really works for you, has a slim side effect profile, and you only go in like once a month. Those 15 months were totally worth it for me. I got to live without thinking about cancer. I just want to find another drug like that.

I will do anything for another working trial drug over more chemo.

Dx 2008, DCIS, Left, Stage 0, ER+/PR+, HER2- Surgery 10/1/2008 Lumpectomy; Lumpectomy (Left) Chemotherapy 12/1/2008 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Radiation Therapy 4/1/2009 Breast Dx 7/1/2011, DCIS, 1cm, Stage IB, 0/30 nodes, ER+/PR+, HER2- Surgery 7/13/2011 Mastectomy; Mastectomy (Left); Mastectomy (Right) Chemotherapy 8/13/2011 Adriamycin (doxorubicin) Surgery 1/3/2012 Reconstruction (Left): DIEP flap; Reconstruction (Right): DIEP flap Dx 11/11/2015, Left, Stage IV, metastasized to bone, ER+/PR+, HER2- Targeted Therapy 3/1/2016 Ibrance (palbociclib) Hormonal Therapy 4/15/2016 Faslodex (fulvestrant) Targeted Therapy 6/25/2018 Afinitor (everolimus) Hormonal Therapy 6/25/2018 Aromasin (exemestane) Chemotherapy 9/2/2018 Xeloda (capecitabine) Hormonal Therapy 10/16/2019 Chemotherapy 6/22/2021 Surgery
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May 23, 2022 10:49AM cure-ious wrote:

Mika, It's very impressive you can navigate from one trial to another- sounds like it'd be good to move off of endocrine therapy for a bit. How about the TREM2-immunotherapy trial?

PY314 (TREM-2) Antibody, alone or with KeytrudaPhase 1a/b. Completes: 10/28/2023 - Mayo Clinic Scottsdale https://www.sciencedaily.com/releases/2020/08/2008... https://clinicaltrials.gov/ct2/show/NCT04691375

Or one with a PARP inhibitor? TALALVE: Talazoparib with Avelumab Completion: Dec 31 2022 Salt Lake City https://clinicaltrials.gov/ct2/show/NCT03964532 No prior PARPi or Immunotherapy

Or the Rosenberg trial: https://www.clinicaltrials.gov/ct2/show/NCT01174121

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May 23, 2022 05:18PM mikainsb wrote:

Thank you cure-ious. I will definitely take those back to my oncologist and I am super appreciative of the links.

I am under the impression that PARP correlates with PDL amplification which I don't have. It would be great to be wrong.

The Rosenberg trial has always been on my list, since it made headlines. I was under the impression I should get through the more traditional options first. Well, I have gotten through most of them at this point.

I have mostly switched methodologies at every hop. CDK4 to chemo to endocrine to chemo to endocrine. I was thinking to revert to CDK4, since it has been 4 years, if nothing else was promising.

Any info on people revisiting CDK4s?

Dx 2008, DCIS, Left, Stage 0, ER+/PR+, HER2- Surgery 10/1/2008 Lumpectomy; Lumpectomy (Left) Chemotherapy 12/1/2008 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Radiation Therapy 4/1/2009 Breast Dx 7/1/2011, DCIS, 1cm, Stage IB, 0/30 nodes, ER+/PR+, HER2- Surgery 7/13/2011 Mastectomy; Mastectomy (Left); Mastectomy (Right) Chemotherapy 8/13/2011 Adriamycin (doxorubicin) Surgery 1/3/2012 Reconstruction (Left): DIEP flap; Reconstruction (Right): DIEP flap Dx 11/11/2015, Left, Stage IV, metastasized to bone, ER+/PR+, HER2- Targeted Therapy 3/1/2016 Ibrance (palbociclib) Hormonal Therapy 4/15/2016 Faslodex (fulvestrant) Targeted Therapy 6/25/2018 Afinitor (everolimus) Hormonal Therapy 6/25/2018 Aromasin (exemestane) Chemotherapy 9/2/2018 Xeloda (capecitabine) Hormonal Therapy 10/16/2019 Chemotherapy 6/22/2021 Surgery
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May 23, 2022 05:43PM bevjen wrote:

Mikainsb,

No info about what you are seeking, but I'm sure you know that the Rosenberg trials (there are 2) are extremely difficult to get into. My oncologist says it's because they are looking for the perfect tumor so they can demonstrate results.

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 7/5/2019 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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May 23, 2022 06:23PM susaninsf wrote:

mikainsb,

I was on Ibrance for 20 months starting in 12/2016. Tried Verzenio last year and it worked for 6 months.

At this point, I'm happy to get 6 months.

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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May 23, 2022 10:35PM - edited May 23, 2022 10:36PM by cure-ious

MIka, Susan is right about Verzenio, some people have gotten 16 months in late line, and apparently it works well on liver mets.

The MONARCH 2,3 trials had over half of the 132 patients having more than 3 sites of mets, and with a median of least 3 prior therapies for MBC. Overall anti-cancer responses were seen in nearly 20% of patients where the median duration of the response was nearly 9 months;whereas over 70% (of those patients who responded) got a median response of at least 6 months. So Susan fits right in there with those numbers!

You still would take that with endocrine therapy, here is one trial that has giredestrant with 1) Abemaciclib 2) Ribociclib 3) Ipatasertib 4) Inavolisib 5) Everolimus or 6) Samuraciclib (CDK7 inhibitor)

https://clinicaltrials.gov/ct2/show/NCT04802759

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May 24, 2022 12:17AM sadiesservant wrote:

Just chiming in. I got 15 months out of Verzenio. Mind you, technically Ibrance did not fail earlier - I failed Ibrance with wonky blood.

Dx 4/2001, IDC, Right, 1cm, Stage IIA, Grade 3, 1/10 nodes, ER+ Surgery 5/11/2001 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 10/22/2007 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 3/29/2017 Arimidex (anastrozole) Targeted Therapy 4/20/2017 Ibrance (palbociclib) Dx 10/12/2017, IDC, Right, Stage IV, metastasized to other Chemotherapy 10/21/2017 Xeloda (capecitabine) Radiation Therapy 11/15/2017 External Local Metastases 11/15/2017 Radiation therapy: Bone Hormonal Therapy 1/19/2018 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 10/10/2019 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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