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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 04:40AM

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 19, 2021 03:16PM SusaninSF wrote:

I have my slot on the ARX-788 trial at USC but still have to do screening (CTs, EKGs, etc.). The main downside of the trial is there is a 28 day washout period. According to the trial page on clinicaltrials.gov, it was a 14-day washout but they have since doubled it. I wonder why. That is a long time to be off treatments. My MO wants me to do one more cycle of eribulin since I seem to be doing well on it. This means I won't be able to get the trial drug until the end of the year.

Pretty disappointed.

- 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 19, 2021 06:40PM Cure-ious wrote:

Susan, Congratulations on the trial slot!!! the drug looks superb, too bad for the long washout but then again, the rest of the body gets to recover a bit...

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Nov 20, 2021 10:57PM SusaninSF wrote:

AlabamaDee,

Will be thinking of you tomorrow and sending positive energy your way.

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 22, 2021 04:16PM emac877 wrote:

I had a question for you all, at what point did you decide to opt to go in to a trial? Forgive me if this question has been answered somewhere and I missed it. I found the thread looking for info on the SERENA trials. Several of you are familiar to me from other threads. I am learning a lot just reading through here. I am not currently in a trial and am stable on my current therapy. I am just an information hound and like to know my options in advance should things progress. Thanks.

Dx 2/8/2018, IDC, Right, 2cm, Stage IIB, Grade 2, 1/3 nodes, ER+/PR+, HER2- (IHC) Surgery 3/22/2018 Lumpectomy: Right; Lymph node removal: Underarm/Axillary Chemotherapy 6/8/2018 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Radiation Therapy 8/26/2018 Whole-breast: Breast, Chest wall Dx 12/4/2019, IDC, Stage IV, metastasized to bone Radiation Therapy 12/23/2019 External: Bone Surgery 12/31/2019 Hormonal Therapy 1/6/2020 Faslodex (fulvestrant) Targeted Therapy 1/7/2020 Verzenio Hormonal Therapy 12/9/2020 Aromasin (exemestane) Hormonal Therapy 6/23/2021 Faslodex (fulvestrant)
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Nov 23, 2021 07:07AM perky2020 wrote:

emac877 that is a great question! I asked my MO and my secondary MO and they both said for me next they would recommend Xeloda which is a chemo. Then I hear many trials do not allow patience that have had chemo and that we should do a trial before we are heavily treated?

Dx 2/6/2015, IDC, Left, 2cm, Stage IIA, Grade 2, 0/3 nodes, ER+/PR-, HER2- (FISH) Surgery 3/16/2015 Lymph node removal: Sentinel; Mastectomy: Left; Reconstruction (left) Chemotherapy 5/26/2015 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Hormonal Therapy 9/30/2015 Arimidex (anastrozole) Hormonal Therapy 11/1/2016 Aromasin (exemestane) Dx 12/27/2016, IDC, Stage IV, metastasized to bone, ER+/PR-, HER2- Hormonal Therapy 1/2/2017 Faslodex (fulvestrant) Targeted Therapy 1/11/2017 Ibrance (palbociclib) Radiation Therapy 1/14/2017 External: Bone Radiation Therapy 4/20/2020 External: Bone Radiation Therapy 6/25/2021 External: Bone Targeted Therapy 9/13/2021 Afinitor (everolimus) Hormonal Therapy 9/13/2021 Aromasin (exemestane)
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Nov 23, 2021 09:57AM Moissy wrote:

Wow, Dee, that trial list is so well compiled andhelpful! Thanks for posting.

Dx 2004, IDC, 6cm+, Grade 2, 0/1 nodes, ER+, HER2- Dx 2015, Stage IV, ER+/PR+, HER2-
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Nov 23, 2021 01:47PM GG27 wrote:

My MO suggested that instead of standard of care, I might want to look at a trial for a new drug, Ibrance. I would never have had the opportunity to be on Ibrance if I hadn't gone on the trial. I got 30 cycles out of it. When it was finally approved, approval was for first line only, which here in BC, I believe it still is 7 years later. I am now on my fourth drug trial, fifth or sixth lifestyle trial. I am happy to extend the number of lines I have open to me, even if some of the trial drugs are not a good fit for me.

cheers, dee

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: Left, 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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Nov 23, 2021 05:04PM SusaninSF wrote:

Wow Dee! 30 cycles is amazing! I was also on an Ibrance trial and got 20 months (27 or 28 cycles) on it. It was just a dosage trial, 100 vs. 125 mgs so very low risk.

I've been on three trials so far, Ibrance, Piqray and Trodelvy. All are now FDA approved. Hope my luck will continue on the ARX-788 trial I'm trying to join.

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 23, 2021 05:21PM SusaninSF wrote:

Found three other sessions at SABC that might be interesting those of us who are ER+/HER2- or low, Elacestrant and Opdivo+Yervoy on Wednesday and Neratinib+Herceptin+Faslodex on Thursday.

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 23, 2021 05:43PM BevJen wrote:

Susan,

I think that second one is the Summit basket trial that Shetland pony was on.

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 23, 2021 05:54PM - edited Nov 23, 2021 05:55PM by Cure-ious

Good catch, Susan!! Time to work in some trials in that have immunotherapy (IO) as well. Dee, for your list, it seems that if I-F worked for any reasonable time, we should head to trials for SERDs or PROTACS well before trying Xeloda. And for anything with immunotherapy, it should include some compound designed to expose the tumor by releasing immunosuppressive cells.

And we need better biomarkers too- PDL1 expression, for example, is a very poor predictor of who does or does not respond to IO...

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Nov 23, 2021 06:05PM - edited Nov 23, 2021 09:10PM by moth

Re the pd-l1 expression and response, one reason I've heard as contributing to the outcome disparities is that the tests evaluating the marker expression are not yet consistent. Dr Hope Rugo's paper on it https://academic.oup.com/jnci/advance-article/doi/...


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 23, 2021 08:04PM Cure-ious wrote:

Yep, and maybe how hidden the tumor is by other immune cells- it seems this field has gone on for so long now there ought to be some promising approaches being tested trials for ER-positive cancers, but how is that ever going to happen when we don't even have biomarkers that work...

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Nov 24, 2021 08:20AM Moissy wrote:

Oh, Dee, how frustrating. So many hoops to jump through and then a last-minute curve ball. I hope you get an answer back quickly on the CERAN trial.

Dx 2004, IDC, 6cm+, Grade 2, 0/1 nodes, ER+, HER2- Dx 2015, Stage IV, ER+/PR+, HER2-
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Nov 24, 2021 09:06AM moth wrote:

Frustrating news Dee. I hope you hear something good soon!

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 24, 2021 09:21AM - edited Nov 25, 2021 04:57AM by NewGardener

Hi everyone

I want to thank you all for the great discussion that takes place here. I don't always chime in but I lurk a lot and continue to learn.

For perky2020 and emac877, I definitely recommend considering trials sooner rather than latter because you have more opportunities. I suggest tracking webinars and sites like this for ideas because it's better to plan a bit. There's not always a lot of time at progression to set things up.

Five of my 11 lines of MBC treatments have now been in trials. Only 2 worked with any duration - 2 years with palbo/bazedoxifene also 18 months with inavolisib/GDC-077 with fulvestrant (it's a pik3ca inhibitor). Enobosarm, the Lilly CDK7, and the TTK inhibitor didn't work for me. But I've managed to get this far with only 2 chemos. Had to do the second because I did find myself in a visceral crisis in late 2019. But here I am. My oncologist can't believe that I've gone 11 months on abemaciclib, but it does appear from my last scan that I might be looking again soon. I'm really hoping to figure out a way to access Trodelvy in Canada for ER+.

SusaninSF - good luck on your new trial. I have to admit I watch what you and your oncologist come up with to figure out my wish list:)

Edited after seeing the moderator post below - AlabamaDee - Good luck! I look forward to your next update.

Take care all,

Heather



Dx 2004, Stage IIA, ER+/PR+, HER2- Surgery 11/23/2004 Mastectomy: Right Chemotherapy 12/27/2004 AC + T (Taxol) Hormonal Therapy 4/1/2005 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Dx 2010, Stage IV, ER+/PR+, HER2- Hormonal Therapy 2/1/2010 Femara (letrozole) Surgery 3/1/2010 Prophylactic ovary removal Hormonal Therapy 4/1/2012 Faslodex (fulvestrant) Targeted Therapy 10/22/2013 Afinitor (everolimus) Hormonal Therapy 10/22/2013 Aromasin (exemestane) Chemotherapy 11/4/2014 Xeloda (capecitabine) Hormonal Therapy 7/19/2015 Targeted Therapy 7/19/2015 Targeted Therapy 7/27/2017 Targeted Therapy 1/23/2018 Hormonal Therapy 1/24/2018 Faslodex (fulvestrant) Targeted Therapy 10/8/2019 Chemotherapy 11/25/2019 Taxol (paclitaxel) Targeted Therapy 9/29/2020 Targeted Therapy 12/16/2020 Verzenio
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Nov 24, 2021 12:36PM - edited Nov 24, 2021 12:37PM by Husband11

This Post was deleted by Husband11.
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 24, 2021 12:55PM ShetlandPony wrote:

AlabamaDee, I am awed by your determination and intelligence in keeping up with trial info and seeking treatment. Form your comment on the liver mets thread, it sounds like you will join this CERAN trial?

I feel like I should be like AlabamaDee, but am having trouble finding the drive. I'm not attending (virtually) SABCS as I ought to, either. I'm like one of those air-filled holiday decorations on someone's front lawn, lying there all deflated with no air to hold me up. I'd love to switch from Faslodex to one of these newer meds, but I suppose I would not qualify for a trial at this point. I just updated my profile to show that I got 1 1/2 years on the SUMMIT trial. I was taken off it this month because of progression in the form of a new met to the transverse colon, for which I had surgery because the colon was almost blocked. The surgeon noted "multiple peritoneal nodules along the peritoneal surfaces, bowel mesentery and on the intestines". Up until now, all we knew was liver mets only, and the bile duct. And the bile duct is working fine now and last scan showed no active liver mets! All I am on right now is Faslodex. Awaiting genomic sequencing, seeing onc next week.

2011 Stage I ITCs sn, premenopausal, Oncotype 16. 2014 Stage IV mets breast,liver. TaxolNEAD. Ibrance+letrozole 2yrs. Fas+afinitor nope. XelodaNEAD 2yrs. Eribulin,Doxil nope. SUMMIT FaslodexHerceptinNeratinib for Her2mut NEAD 1 1/2yrs. GI/perit mets Dx 2011, ILC, 1cm, Stage IA, Grade 1, 0/1 nodes, ER+/PR+, HER2- Dx 2014, ILC, 2cm, Stage IV, metastasized to liver/other, Grade 2, ER+/PR+, HER2- Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Radiation Therapy Whole-breast: Breast Surgery Lumpectomy
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Nov 24, 2021 09:08PM SusaninSF wrote:

AlabamaDee,

I hope you can get on the OP-1250 trial. I think it's a very promising drug. The company is right here in the Bay Area but there are no trial sites in California. So sorry to hear that you were rejected from the AC682 trial but it sounded a lot riskier than OP-1250. I totally understand your anxiety about waiting to get set up on a trial while you are progressing. It's stressful trying to get into a trial and then there are the "normal" stresses of changing treatment. Will it work? Will I suffer terrible SEs?

I've had some good news about my ARX-788 trial. My MO spoke to the company and they said that the washout period is 14 days, not 28 days. I had pointed out to the trial site doctor that the clinicaltrials.gov site said 14 days but they said that info was old. Somehow, the trial site doctor didn't have the latest information! The company also allowed me to get my screening at UCSF so that will save me a lot of traveling. I am so lucky to have such an amazing MO who goes to bat for me every time no matter how busy she is. I'm crossing my fingers that I don't get a last-minute curveball too. So far, my bloodwork has been good despite my liver progression.

Your tenacity is so inspirational. Your example has really helped me to keep going and not accept that my treatment options are over.

Love and light, 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 24, 2021 09:19PM Moderators wrote:

Hi all! Just a quick note to let you know somehow Alabamadee's account was compromised and the posts above that have now been deleted were NOT her posts. We are taking further actions to remedy the situation, but please disregard the posts previously made from her account, other than the ones still standing. Thank you for your patience and understanding!

--The Mods

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Nov 25, 2021 12:50AM BSandra wrote:

Dee, congratulations - very good news!!!:)

Saulius

Since May'21:NED. Mar'21:axilla LN surgery. Sep'19-Mar'21:NED. Feb'19:recurrence, left breast,IBC. May'18-Feb'19:NED. Jun'18:DC/CIK. Aug'17:stage IV de novo at age 33. Dx 8/4/2017, IDC, Left, 6cm+, Stage IV, metastasized to liver, Grade 2, ER-/PR-, HER2+ (IHC) Chemotherapy 8/27/2017 Taxotere (docetaxel) Targeted Therapy 8/28/2017 Herceptin (trastuzumab) Targeted Therapy 8/28/2017 Perjeta (pertuzumab) Chemotherapy 3/12/2019 Taxotere (docetaxel) Surgery 7/22/2019 Mastectomy: Left Radiation Therapy 9/9/2019 Whole-breast: Lymph nodes, Chest wall Surgery 4/15/2021 Lymph node removal: Underarm/Axillary Radiation Therapy 12/13/2021 3DCRT: Lymph nodes
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Nov 25, 2021 08:12AM Moderators wrote:

Hi again all! This is to let you know Alabamadee's account was once again compromised. We have now disabled that account, per her request, and she will post here once she has created a new account. Please let us know via PM if you have any questions!

--The Mods

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Nov 25, 2021 08:29AM Husband11 wrote:

That's very sad that someone would hijack her account. What is wrong with people?

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 26, 2021 04:20AM Moderators wrote:

AlabamaDee's account continues to be compromised. The poster above, AlabamaDeee, which started out as BamaD is NOT the real AlabamaDee. We are in contact with the real AlabamaDee and she has NOT re-registered. Please do not respond to anyone claiming to be AlabamaDee until we notify you.

Please be cautious about sharing your email addresses, or any personal information over PM.

We are working on this issue. Please contact us via PM, or to community@breastcancer.org if you have any concerns.

Warmly,

The Mods

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Nov 26, 2021 08:10AM - edited Nov 26, 2021 08:16AM by SusaninSF

To the moderators,

Oh no. I have been PMing with AlabamaDee. I hope that doesn't put my account at risk. Let me know what I should do.

I'm so sad that, when she needs us the most, someone has hacked into her account.

- 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 26, 2021 09:15AM Cure-ious wrote:

Dang these bots!

It seems to me we had some comments from a new poster on here yesterday that have now disappeared? or perhaps I am hallucinating from the post-Thanksgiving feast...

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Nov 27, 2021 10:20PM SusaninSF wrote:

I wanted to let you all know that Theresa45 died this morning. I knew something was wrong because we texted each other a lot and she didn't respond to my last text. Her husband sent me an email with the terrible news. As you all know, Theresa was always so kind and considerate. She was having a lot of trouble breathing so I'm glad she is no longer suffering.

My heart is broken.

- 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 27, 2021 10:46PM Cure-ious wrote:

Oh, I'm so sorry to hear about Theresa- she was looking forward to trying the PACT trial just this last summer, this is very sad

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Nov 27, 2021 11:50PM Nkb wrote:

SusanSF- this is very sad, I am so sorry to hear this-

Dx 12/2011, ILC, Both breasts, 6cm+, Stage IIIC, Grade 2, 34/40 nodes, ER+/PR+ Surgery 2/4/2012 Lymph node removal: Left, Right, Underarm/Axillary; Mastectomy: Left, Right Chemotherapy 2/28/2012 AC + T (Taxol) Radiation Therapy 9/11/2012 Hormonal Therapy 10/21/2012 Arimidex (anastrozole) Dx 5/2017, ILC, Stage IV, metastasized to bone, ER+/PR-, HER2- Hormonal Therapy 6/1/2017 Faslodex (fulvestrant) Targeted Therapy 6/1/2017 Ibrance (palbociclib) Targeted Therapy 3/13/2019 Afinitor (everolimus) Hormonal Therapy 3/13/2019 Aromasin (exemestane) Chemotherapy 3/10/2020 Xeloda (capecitabine)
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Nov 28, 2021 04:41AM Moderators wrote:

We're so sorry to hear such unwelcome news. Our sincerest condolences to Theresa's family and friends.

The Mods

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