Posted on:
Nov 29, 2018 07:40AM
K
Joined:
Oct 2016
Posts:
725
Latest activity:
Dec 4, 2021
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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karpc
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Aug 2016
Posts:
194
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Aug 10, 2022
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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
6/10/2016 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
Local Metastases
2/2/2018 translation missing: en.treatments.local_metastases.local_metastases_types.short_options.liver_stereostatic-body-radiation-therapy: Liver
Targeted Therapy
2/16/2018 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)
N
nicolerod
Joined:
Mar 2019
Posts:
2,834
Latest activity:
Aug 10, 2022
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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)
M
mikainsb
Joined:
Nov 2008
Posts:
36
Latest activity:
Jul 25, 2022
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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
Hormonal Therapy
1/21/2022
Targeted Therapy
7/18/2022 Verzenio
Surgery
H
husband11
Joined:
Jan 2009
Posts:
2,233
Latest activity:
Aug 9, 2022
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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)
N
nicolerod
Joined:
Mar 2019
Posts:
2,834
Latest activity:
Aug 10, 2022
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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)
H
husband11
Joined:
Jan 2009
Posts:
2,233
Latest activity:
Aug 9, 2022
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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)
K
karpc
Joined:
Aug 2016
Posts:
194
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Aug 10, 2022
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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
6/10/2016 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
Local Metastases
2/2/2018 translation missing: en.treatments.local_metastases.local_metastases_types.short_options.liver_stereostatic-body-radiation-therapy: Liver
Targeted Therapy
2/16/2018 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)
N
nicolerod
Joined:
Mar 2019
Posts:
2,834
Latest activity:
Aug 10, 2022
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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)
S
susaninsf
Joined:
Oct 2006
Posts:
1,170
Latest activity:
Aug 10, 2022
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Jul 5, 2022 01:12PM
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)
K
karpc
Joined:
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Posts:
194
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Aug 10, 2022
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Jul 6, 2022 02:30AM
karpc
wrote:
HiSusan - I see Dr. Kagihara. She is a very young and new onc at queens specializing in breast cancer. I’ve only been seeing her since January but I love her. My last onc was past retirement age and got short and snippy at times. It’s strange having such a young onc but she has the passion and drive that I was looking for. - Kar
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
6/10/2016 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
Local Metastases
2/2/2018 translation missing: en.treatments.local_metastases.local_metastases_types.short_options.liver_stereostatic-body-radiation-therapy: Liver
Targeted Therapy
2/16/2018 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)