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.

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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Jul 2, 2022 01:56AM karpc wrote:

Saulius - thanks for your input. Luckily my onc and I had a good chat today and she agreed with me that a biopsy isn’t necessary right now. Thansk

​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; Mastectomy; Mastectomy (Left); Mastectomy (Right); Reconstruction (Left); Reconstruction (Right) Chemotherapy 6/9/2016 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Hormonal Therapy 9/30/2016 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 Local Metastases 2/2/2018 translation missing: en.treatments.local_metastases.local_metastases_types.short_options.liver_stereostatic-body-radiation-therapy: Liver Targeted Therapy 2/15/2018 Ibrance (palbociclib) Hormonal Therapy 2/17/2018 Faslodex (fulvestrant), Femara (letrozole), Zoladex (goserelin) Chemotherapy 2/18/2020 Xeloda (capecitabine) Targeted Therapy 10/14/2020 Afinitor (everolimus) Targeted Therapy 6/1/2021 Piqray (alpelisib)
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Jul 2, 2022 08:16PM - edited Jul 3, 2022 10:21AM by nicolerod

I don't know where else to post this...so just wondering if you all have heard about this drug.. its mainly for people with Wilsons Disease but it cured..yes cured women with mTNBC.....

https://empirefinancialresearch.com/articles/a-free-markets-failure-that-may-be-costing-lives

also this:

https://journals.lww.com/oncology-times/pages/articleviewer.aspx?year=2014&issue=02100&article=00010&type=Fulltext#:~:text=%E2%80%9CCopper%20depletion%20was%20most%20effective%20in%20the%20triple-negative,progression-free%20survival%20%28PFS%29%20was%20estimated%20at%2084%20percent

and this:

https://pubmed.ncbi.nlm.nih.gov/34911956/

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 4/29/2019 Surgery Chemotherapy Doxil (doxorubicin) Chemotherapy Xeloda (capecitabine) Radiation Therapy Surgery Mastectomy; Mastectomy (Left); Mastectomy (Right)
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Jul 3, 2022 09:26AM mikainsb wrote:

On Elacestrant: I was on a similar mechanism (oral SERD) trial drug. I have the ESFR1 mutation. I was on the drug for 15 months. It was by far the lowest symptom profile medication I ever took and was great. I was literally hiking 30 miles a week. I have exceptionally high hopes that Elacestrant will be fantastic for many women with ESFR1. Like the CDKs which gave many of us 2 years. I suspect Elacestrant will give many a year.


Fingers crossed

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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Jul 3, 2022 11:29AM husband11 wrote:

The idea of copper depletion treatment has been around for quite a while. I don’t recall hearing way back that it was specific to triple negative breast cancer, but that news is very exciting, as it might explain why previous trials had poorer results

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 6/5/2017 Chemotherapy Xeloda (capecitabine) Targeted Therapy Ibrance (palbociclib) Hormonal Therapy Femara (letrozole)
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Jul 3, 2022 12:37PM nicolerod wrote:

Yea I am just wondering if it only works if people have High copper....?? I was tested in 2019 and was "normal" level...

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 4/29/2019 Surgery Chemotherapy Doxil (doxorubicin) Chemotherapy Xeloda (capecitabine) Radiation Therapy Surgery Mastectomy; Mastectomy (Left); Mastectomy (Right)
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Jul 3, 2022 04:02PM husband11 wrote:

Just a guess, but I would say it wouldn’t require high copper levels. Normal copper levels can sustain tumor angiogenesis, and low levels are needed to suppress it (and the cancer).

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 6/5/2017 Chemotherapy Xeloda (capecitabine) Targeted Therapy Ibrance (palbociclib) Hormonal Therapy Femara (letrozole)
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Jul 3, 2022 09:40PM karpc wrote:

Nicole - I met with dr. Rosenberg by zoom appointment 4 years ago . He’s a naturopathic doctor in Florida. He recommended the copper treatment depletion therapy for me. At the time I was choosing my alternative treatments and what I could afford and ended up picking other things to try . He said it was best for those with low tumor burden and I was a good candidate at the time but probably not now. I haven’t really followed it since then so I don’t have more insight. It seems like the trials for it weren’t going anywhere although it looks like a promising treatment.

​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; Mastectomy; Mastectomy (Left); Mastectomy (Right); Reconstruction (Left); Reconstruction (Right) Chemotherapy 6/9/2016 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Hormonal Therapy 9/30/2016 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 Local Metastases 2/2/2018 translation missing: en.treatments.local_metastases.local_metastases_types.short_options.liver_stereostatic-body-radiation-therapy: Liver Targeted Therapy 2/15/2018 Ibrance (palbociclib) Hormonal Therapy 2/17/2018 Faslodex (fulvestrant), Femara (letrozole), Zoladex (goserelin) Chemotherapy 2/18/2020 Xeloda (capecitabine) Targeted Therapy 10/14/2020 Afinitor (everolimus) Targeted Therapy 6/1/2021 Piqray (alpelisib)
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Jul 4, 2022 01:09PM nicolerod wrote:

Kar thanks..I am considering consulting with him or this MO in NH that use to be involved with this trial at MSK...

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 4/29/2019 Surgery Chemotherapy Doxil (doxorubicin) Chemotherapy Xeloda (capecitabine) Radiation Therapy Surgery Mastectomy; Mastectomy (Left); Mastectomy (Right)
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2 hours ago susaninsf wrote:

karpc,

I was on Keytruda (It didn't work for me) and have never been TN. Once a drug is approved you can get it off-label if your insurance approves it.

Who is your MO in Hawaii? My Mom and SIL both see Dr. Sumida.

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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