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Topic: How are people with liver mets doing?

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: Aug 16, 2013 07:02PM

blondie1 wrote:

I continue to be very scared once I found my liver mets progressed after having to go off doxil. I am hoping to find some support in alleviating my deep seated fears by hearing other stories of people living and dealing with liver mets. My onc says I have such a petite frame (105) that an enlarged liver will definitely cause me some pain until chemo takes care of it.

How are others doing and getting through this with a positive attitude?

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Dec 1, 2021 07:50AM NicoleRod wrote:

Ok...what a relief that is to be over with. Thank you all for being here for me!!!! It means so much to me. So I had a long conversation with my MO... turns out the MRI of the liver I had on Monday... there are 2 tiny new lesions..so this is considered progression...we are gonna move to Trodlevy..... I welcome all prayers for minimal to no side effects... Thank you my dear sisters.


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 **TNBC AUG 2021 Dec 2019-May 2020 Xeloda Failed May-July 2020 - Doxil Failed Dx 12/19/2014, DCIS, Right, Stage 0, Grade 3, ER+/PR+, HER2- (FISH) 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: Left, Right
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Dec 1, 2021 08:06AM BevJen wrote:

Had an appointment with my MO yesterday. Most recent scan (October) was a good one -- bones stable, liver mets significantly tamped down, nothing else really going on. Have been on very reduced dose of xeloda combined with neratinib. Two sets of labs since most recent scan. Basically stable after a xeloda adjustment downward, but she wants another scan in early January. Talking now about enhertu as a possible next treatment, since I have Errb2 mutations (so technically low HER2, as I understood it). A bit scared about enhertu, since the list of side effects is long and includes a high degree of pneumonitis among users.

Still going to PT for my dual hip surgeries in April. Found out (shock to me) that I may have trouble getting into a trial since I am still having some issues with ambulation. Motivation to step it up in PT, I guess.

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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Dec 1, 2021 08:50AM candy-678 wrote:

I have been off the boards the last 12 hours. Good to come back here to good news !!!!

Nicole- Thank God no brain cancer !!!!! I am glad you stayed for the MRI and the doctor discussion about the results. I pray the new treatment for the liver mets is an easy one as far as side effects (I have not read about the med) and that you get some stability for once. BTW... what was the headache that took you to the ER? I was thinking maybe you had a stroke. Thank God it was not that either. Did they give you some meds for the headache? Your posts seemed like you were a little off---typos, etc. That could be a sign of a stroke too.

BevJen- Happy for you that your scans were good. Woohoo. I have not discussed the "next plan" with my MO. I have read that with Lynparza the median PFS is 7 months. I am 3 months in. Happy it is working and hoping it will for a long time, but we have not discussed what would be next.

Found mets on CT for unrelated issue. I only had 2 treatments with IV chemo for the Stage II, then found Stage 4 and switched to hormone therapy/targeted therapy. I consider myself de novo. Xgeva use for bone mets. Liver bx Apr 2021 shows ER- now. Dx 6/2017, ILC/IDC, Left, 3cm, Stage IIB, Grade 3, 0/1 nodes, ER+/PR+, HER2- Surgery 7/11/2017 Lymph node removal: Sentinel; Mastectomy: Left Chemotherapy 8/1/2017 AC Dx 9/2017, ILC/IDC, Stage IV, metastasized to bone/liver, 0/1 nodes, ER+/PR+, HER2- Targeted Therapy 11/1/2017 Ibrance (palbociclib) Hormonal Therapy 11/1/2017 Femara (letrozole), Zoladex (goserelin) Dx 4/2021, ILC/IDC, Stage IV, metastasized to bone/liver, ER-/PR+, HER2- (FISH) Hormonal Therapy 9/4/2021 Zoladex (goserelin) Targeted Therapy 9/4/2021 Lynparza
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Dec 1, 2021 11:36AM SusaninSF wrote:

DaughterOf,

First of all, your mom is so lucky to have you. I'm so sorry that she is in a bad place and seems to be taking it out on you. I agree that psychiatric help of some kind and perhaps an antidepressant would be a good idea. Does your hospital have palliative care? My palliative care doctor has helped me a lot. Would she be responsive to you explaining to her that she needs to do these things because her psychological condition is taking a huge toll on you? No mom would want that.

I am reading a book called "Full Castrophe Living" that focuses on mindffulness based stress reduction (MBSR) for those who are facing serious conditions. There may even be MBSR workshops in your area.

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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Dec 1, 2021 01:23PM - edited Dec 1, 2021 02:53PM by moth

DaughterOf, I think that's not an unusual way for your mother to feel. i was like that for months and that feeling still sometimes grabs me, just like that. I'm wondering if the winter holidays are making things worse for your mom? It's a lot to think about, is this the last one, how to make it special. It can make me very angry and depressed.

The other thing that can be really annoying for me is when people around me are all upbeat and positive. It makes me 100000000% worse and angry. Like they're minimizing what I'm going through & not understanding the tragedy I'm feeling.

Also, it takes 2 to argue :) don't argue with her. Don't contradict her. When I'm angry or sad, I definitely do not want anyone saying 'oh but you're doing well now.! The dr says things are looking good! blah blah" (I don't know if that's happening so this is just examples).

Let her feel what she feels and be how she is. Yes, she'd probably benefit from a support group and talking to other metastatic patients or joining this board or showing up at the BCO Zoom but if she doesn't want to go then you can't make her.

YOU should go to a counsellor and join a support group for caregivers. Control things you can control, & let go of the things you can't.

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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Dec 1, 2021 01:24PM moth wrote:

Nicole, so glad the brain mets thing was just a whole bunch of stress that turned out to be nothing but bummed about your liver. I hope Trodelvy is very good for you. hugs

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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Dec 1, 2021 01:42PM moth wrote:

BevJen, in the clinical trial exclusions sections they often mention ECOG score, and most seem to want 0-1. You can read about the scale here https://ecog-acrin.org/resources/ecog-performance-... I hope your PT continues to go well. I'm doing PT for my wrist and there are improvements but it's been slow...


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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Dec 1, 2021 01:44PM ShetlandPony wrote:

Bev, you said that there is a relationship between ERBB2 (Her2) mutation and Her2 low. Can you or anyone else explain/elaborate?

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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Dec 1, 2021 01:47PM ShetlandPony wrote:

ECOG performance status #notgrade5yet

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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Dec 1, 2021 01:57PM moth wrote:

shetland 🤣🤣 . 'm gonna start using that hashtag

Have you broken out of hospital yet?

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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Dec 1, 2021 02:14PM BevJen wrote:

SP,

No, I can't explain the mutations versus HER2 low stuff -- I am just parroting what my doc was saying yesterday and I didn't question her about it. I figured we'd have that talk if and when I was more likely headed for a drug change. I can only process so much at one time.

And, Moth, thanks for that link. I, like others here, am more than slightly amused that they had to have a number on the scale for dead. (I think it was also on the Karnofsky scale as well.) That's bizarre.

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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Dec 1, 2021 02:27PM ShetlandPony wrote:

I have not broken out yet, but we are making progress. In a few hours we should know just what gram negative bacterium infected the port, which antibiotic to use (currently on IV flagyl and cepafine), and have orders for a home health nurse. I will have them re-teach me how to do the daily IV antibiotics myself so hopefully they can come over just once. Because of covid I do not want a home health care worker visiting me after visiting other folks. The really good news is that the doctor who just came by says I will probably be able to keep my port because it is a gram negative and not gram positive bacterium. (The gram positives are sticky on ports.) My white blood cell counts and temperature have improved.

The nutritionist says I have moderate malnutrition and am underweight. No kidding, after chronic diarrhea from treatment followed by bowel problems, fasting, surgery, low fiber diet. Lol it feels like I have been told I need to improve my grade or I won't pass the class. I am supposed to add protein powder to food, eat a lot, etc. I had gotten my iron up a point but it is down again. Sigh. A nice thing about this hospital (!) is that the food is good and I can order what I want any time, whereas at home DH and I have to do all the work of getting ourselves fed.

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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Dec 1, 2021 02:29PM ShetlandPony wrote:

Of course, Bev. We can only process so much and often need to focus on the current situation. If I get a chance to ask my onc I will tell you what she says.

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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Dec 1, 2021 02:37PM Sadiesservant wrote:

Ha SP! Definitely a great hashtag although the Karnofsky scale makes more sense to me... dead = 0. LOL.

Daughter, Moth makes some excellent points. Your mom has not been stage IV for that long and it takes time to adapt to this reality. Hopefully, if she gets a good run on Ibrance she will get to a point where she recognizes she will have good days and she's not done yet. But even for the most determined among us, the feelings of despair can take hold, often when things shift, a treatment stops working, etc. but sometimes for no reason at all. This is a hard road which is difficult for others to understand.

I'm happy to hear the good news from others on scans. Nicole, so happy that the MRI debunked the notion of a brain met but sorry about the new lesions. I'm currently holding my breath, waiting for my next CT scan on December 17th. Pretty sure the Vinorelbine is failing given how I am feeling - lots of spine/hip pain, headaches and discomfort in my right quadrant all point to progression but I won't know until I get the results. Hopefully I can connect with the MO before Xmas to find out what the CT shows and what the plan is if I am right about progression. Timing is a bit tricky as folks start heading off on leave plus I'm still dealing with the MO stand in who has been very difficult to access ... my own MO is back from sabbatical on February 1st and I'm counting the days! This last few months has definitely made me realize how fortunate I am to have the MO I do - he's fabulous and super responsive.

Dx 4/2001, IDC, Right, 1cm, Stage IIA, Grade 3, 1/10 nodes, ER+ Surgery 5/10/2001 Lumpectomy: Right; 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 3/28/2017 Arimidex (anastrozole) Targeted Therapy 4/20/2017 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: Bone Hormonal Therapy 1/18/2018 Faslodex (fulvestrant) Radiation Therapy 8/2/2018 External: Bone Radiation Therapy 11/5/2018 External: Bone Targeted Therapy 10/9/2019 Verzenio Radiation Therapy 11/3/2020 External: 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 Navelbine (vinorelbine) Chemotherapy 1/7/2022 Halaven (eribulin)
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Dec 2, 2021 02:17AM BSandra wrote:

Dear Nicole, I am pretty confident about you and Trodelvy. Targeted drugs are coming into action!

Dear Shetland, isn't the ERBB2 mutation that lead you to start Neratinib? I mean... many human epithelium cells have HER2 expression but ERBB2 mutations can lead to "more" expression, which until some amount may be called "Her2 low". Or you might have no expression, i.e. proteins on the outer surface of the cell but mutation, so this is when TKIs become handy? I think if you score 0 for HER2 on IHC, you still might very well benefit from TKIs that work from "inside" of a cell, and not from outside like MABs. Am I right or wrong? So, let's say, if BevJen is Her20 but has many ERBB2 mutations, it would be better to get a TKI, like Neratinib/Poziotinib/Tucatinib? Why Enhertu then which primarily acts on outer surface expressions?

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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Dec 4, 2021 10:59AM NicoleRod wrote:

Saulius...I am confused a little about Trodlevy being a targeted drug...I just don't get it...bc its chemo...it makes all your hair fall out just like a taxane...so how really is it different from chemo by being a targeted therapy?

I am leary ONLY bc I think my cancer in spine..is still ER+....I say this bc there was no progression there on the Halaven..only the liver progressed....So it makes me wonder if the Trodlevy will work well....

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 **TNBC AUG 2021 Dec 2019-May 2020 Xeloda Failed May-July 2020 - Doxil Failed Dx 12/19/2014, DCIS, Right, Stage 0, Grade 3, ER+/PR+, HER2- (FISH) 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: Left, Right
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Dec 6, 2021 01:41AM BSandra wrote:

Hmm... I did not know Trodelvy causes hair-loss but when I looked up the target, hair follicles has cells expressing TROP2, that is why... Trastuzumab blocks HER2, so epithelium healing is difficult, also affects the heart and other HER2... ADCs is chemo, but at least it is a targeted chemo that can deliver extremely toxic payloads to these unfriendly cells. Nicole, did I miss something - I thought you treated the spine part? 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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Dec 6, 2021 07:30AM NicoleRod wrote:

Sualius I did have radiation to the C7 and T3 but that cancer has not all been killed.... So Saulius I am still confused are you still saying that Trodelvy is a Targeted treatment?

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 **TNBC AUG 2021 Dec 2019-May 2020 Xeloda Failed May-July 2020 - Doxil Failed Dx 12/19/2014, DCIS, Right, Stage 0, Grade 3, ER+/PR+, HER2- (FISH) 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: Left, Right
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Dec 6, 2021 10:17AM S3K5 wrote:

Nicole, I am so happy and relieved that there is no brain met. I can imagine the stress you and your family must have gone through. There is a thread on Trodelvy, but I don't think it is very active. I was on Trodelvy for less than 3 months. Unfortunately it didn't do much for my spine or liver mets. I lost what little hair I had after Doxil treatment. Other than that, the side effects were tolerable. I did not have diarrhea on this drug but had to take anti-nausea medicines. I hope this drug works for you.

Daughterof, I can understand what your mom and you are going through. As others have pointed out, it takes time to come to terms with MBC. Looking back, I think I felt almost normal when I was on Ibrance. It did keep my spine mets stable for 1.5 years. I think your mom probably needs assurance. The fact that many of us have been okay for such a long time should give her assurance that it is not the end. I was diagnosed with spine mets in 2013 (YES, almost 9 years!). Please tell your mom that there are many women living with bone mets for a long, long time.

S3K5 Dx 3/24/2008, IDC, Right, 3cm, Stage IIIA, Grade 2, 5/10 nodes, ER+/PR+, HER2- (FISH) Chemotherapy 4/15/2008 AC + T (Taxol) Targeted Therapy 5/30/2013 Ibrance (palbociclib) Chemotherapy 2/1/2019 Xeloda (capecitabine) Chemotherapy 4/5/2019 Taxol (paclitaxel) Chemotherapy 10/30/2019 CMF Targeted Therapy 7/7/2020 Piqray (alpelisib) Dx 10/19/2020, IDC, Right, Stage IV, metastasized to bone/liver, ER-/PR-, HER2- (IHC) Chemotherapy 12/10/2020 Doxil (doxorubicin) Hormonal Therapy Faslodex (fulvestrant) Hormonal Therapy Femara (letrozole) Chemotherapy Gemzar (gemcitabine)
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Dec 6, 2021 10:51AM Husband11 wrote:

Nicole, Trodlevy is a targeted chemo drug. It is a conjugate of a toxic chemo molecule, attached to an antibody that targets cancer cells. By doing this, it delivers more of the drug to the targeted cancer cells that express the target for the antibody. It's not perfect, and it does still affect undesirable targets like hair follicles.

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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Dec 6, 2021 11:33AM moth wrote:

nicole i think I wrote before my analogy that it's a drug that combines a key to unlock a cell, and a package of chemo. The key only unlocks certain lock. - TROP2. So it is targetted.

Trop2 is present in many healthy cells but there is way more of it in breast cancer cells so they suck up more of the chemo package.


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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Dec 6, 2021 12:49PM - edited Dec 6, 2021 01:51PM by NicoleRod

Thanks moth thanks Husband...

SK35 I am confused why you went on Trodelvy...I thought its only for TNBC??? or should I say mostly and most effective for TNBC

Moth I know you previous mentioned some stuff about Trodelvy..but Saulius saying its Targeted I thought he meant JUST targeted...like not chemo

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 **TNBC AUG 2021 Dec 2019-May 2020 Xeloda Failed May-July 2020 - Doxil Failed Dx 12/19/2014, DCIS, Right, Stage 0, Grade 3, ER+/PR+, HER2- (FISH) 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: Left, Right
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Dec 6, 2021 10:18PM S3K5 wrote:

NicoleRod, you are right. Trodelvy is for TNBC.

I have been diagnosed as TNBC in Oct 2020, after they did a liver biopsy. Till then, I was treated as if I was ER+/PR+ since that was my original diagnosis. After Doxil, I started on Trodelvy. Now I am on immunotherapy/Chemo combo, which is also for TNBC.

Since one year, none of the treatments have really worked to halt the progression of the mets in liver and spine. I am reaching the end of available treatment regimens. Immunotherapy + carbo is my only hope. I will find out in about a month if this treatment is working.

S3K5 Dx 3/24/2008, IDC, Right, 3cm, Stage IIIA, Grade 2, 5/10 nodes, ER+/PR+, HER2- (FISH) Chemotherapy 4/15/2008 AC + T (Taxol) Targeted Therapy 5/30/2013 Ibrance (palbociclib) Chemotherapy 2/1/2019 Xeloda (capecitabine) Chemotherapy 4/5/2019 Taxol (paclitaxel) Chemotherapy 10/30/2019 CMF Targeted Therapy 7/7/2020 Piqray (alpelisib) Dx 10/19/2020, IDC, Right, Stage IV, metastasized to bone/liver, ER-/PR-, HER2- (IHC) Chemotherapy 12/10/2020 Doxil (doxorubicin) Hormonal Therapy Faslodex (fulvestrant) Hormonal Therapy Femara (letrozole) Chemotherapy Gemzar (gemcitabine)
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Dec 7, 2021 05:12AM - edited Dec 7, 2021 06:34AM by BSandra

Dear Nicole, the others already answered the "targeted" question:) And yes, many TNBCs express TROP2. Trodelvy also has a ,,bystander effect" (can not only kill the cell that expresses TROP2 but also cells nearby) - a new "feature" from which you can benefit a lot if TROP2 is not homogeneous among cells. 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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Dec 7, 2021 09:46AM NicoleRod wrote:

Thanks you Saulius.

S3K5....are you or your oncologist looking into clinical trials? I just messaged one in MN where they inject measles into the tumors to create an immune response.... but since you are now TNBC you should be eligible for some trials? I wonder why the Trodelvy didnt work being you are TN... :(. I am praying it works for me for at least more than 3 months. I haven't had anything except Y90 work. Are you taking anything else? I am now taking the Statin.., Ivermectin (3 days on 4 off) and I am even using Frankensense essential oil 4 times a day topically but I am going to start ingesting just 1 drop a day on the 4 days off of ivermectin... I don't think it will cure my cancer but I want to do as much as my liver can handle to try and keep the cancer from growing..im thinking if I have a lot I am attacking it with maybe it will give up..lol

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 **TNBC AUG 2021 Dec 2019-May 2020 Xeloda Failed May-July 2020 - Doxil Failed Dx 12/19/2014, DCIS, Right, Stage 0, Grade 3, ER+/PR+, HER2- (FISH) 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: Left, Right
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Dec 7, 2021 09:16PM OhioNana1605 wrote:

Hello Ladies, I have beenreading a lot of the boards for several months but rarely post. Not sure all my dx and med info is correct or up to date.. I am probably oldest and most tech challenged. For the past two days I have been having sharp pains in liver area. They don't last long and no regular pattern. Anyone else get sharp pain like that. If it continues tomorrow I will have to call my mo.

Thanks. Bev

Dx 3/1/2013, DCIS, Left, 1cm, Stage 0, Grade 1, 0/1 nodes Dx 2/4/2021, Stage IV, metastasized to liver, Grade 3, ER+/PR+, HER2+ Targeted Therapy 4/30/2021 Perjeta (pertuzumab) Chemotherapy 5/19/2021 TAC
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Dec 7, 2021 11:12PM SusaninSF wrote:

Hi OhioNana,

I sometimes get pain in my liver and I can't sleep on my right side because it's tender. Doesn't hurt to call your MO. When was your last scan?

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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Dec 8, 2021 12:37AM OhioNana1605 wrote:

Susan, thanks for reply. I’m usually a stomach sleeper but not tonight. I’m in the recliner. Had first PET last week and only liver lite up. Dr said you get better measurements on ct. last one of those showed some shrinkage. Maybe the 2oz wine yesterday did it. Dr said I can still have some wine. Way past my normal bedtime so I’ll try again. Have a good night. Be

Dx 3/1/2013, DCIS, Left, 1cm, Stage 0, Grade 1, 0/1 nodes Dx 2/4/2021, Stage IV, metastasized to liver, Grade 3, ER+/PR+, HER2+ Targeted Therapy 4/30/2021 Perjeta (pertuzumab) Chemotherapy 5/19/2021 TAC
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Dec 8, 2021 09:40AM - edited Dec 8, 2021 10:24AM by NicoleRod

Im getting a port put in on Friday. trodelvy infusion! I am so worried. Also I was suppose to get a pediatric port because I requested that based on feedback from many other very petite woman. Also is it best to get it on the right side if I sleep on my left?? I am a strickly left side sleeper... Any info ya'll can give me I would appreciate... I am scared. Thanks.

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 **TNBC AUG 2021 Dec 2019-May 2020 Xeloda Failed May-July 2020 - Doxil Failed Dx 12/19/2014, DCIS, Right, Stage 0, Grade 3, ER+/PR+, HER2- (FISH) 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: Left, Right
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Dec 8, 2021 11:30AM Moderators wrote:

Just making sure you know that in addition to our Monday meetups, we now have a 2nd Virtual Meetup TODAY (and now every Wednesday) at 4pm, ET for people with MBC

To register, go HERE.

After registering, you will receive a confirmation email containing information about joining the meeting.

Hope to see you there. Medicating


To send a Private Message to the Mods: community.breastcancer.org/mem...

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