Topic: How are people with liver mets doing?

Forum: Stage IV/Metastatic Breast Cancer — 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: Aug 16, 2013 07:02PM

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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Sep 27, 2017 02:12PM AnimalCrackers wrote:

Kaayborg - thinking of you and sending you love and support.  Here for you through it all!  

Cathy, Diagnosed de novo bone mets June 2014 at age 52. Progression to Liver 2017. Progression to bone mets Sept. 2018. Bisphoshonate (Zometa) infusions every 3 months. Participated in 2 clinical trials, including an AKT1 inhibitor. Dx 6/23/2014, IDC, Left, 4cm, Stage IV, metastasized to bone, mets, ER+/PR+, HER2- Hormonal Therapy 6/23/2014 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Hormonal Therapy 1/5/2016 Femara (letrozole) Targeted Therapy 1/5/2016 Ibrance (palbociclib) Dx 4/2017, IDC, metastasized to liver, ER+/PR+, HER2- Hormonal Therapy 5/18/2017 Targeted Therapy 5/18/2017 Kisqali Hormonal Therapy 12/19/2017 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Targeted Therapy 12/19/2017 Dx 8/20/2018, IDC, Stage IV, metastasized to bone Radiation Therapy 8/20/2018 External: Bone Chemotherapy Taxol (paclitaxel) Surgery
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Sep 27, 2017 03:20PM Bad_At_Usernames wrote:

kaag, I'm so sorry for your setback and am praying it will be just that - a setback.

Z - I hope the trial in Japan goes well for you!!!

mom - thinking of Dani and praying she gets to stay on the trial.

After fairly minimal progression of the liver lesions, I switched from Tykerb/Xeloda to Taxotere/Herceptin/Perjeta. I was having major issues with nausea and diarrhea on X so I was happy to switch. Here's an overview from my blog since I'm too tired to write it again here.

https://2yearsinafricasequel.wordpress.com/2017/09...

If anyone is curious about avera, please contact me

"...to survive this disease, you had to be an eternal optimist and very aggressive..." -Vince DeVita Dx 12/23/2013, IDC, 6cm+, Stage IIIC, Grade 3, ER+/PR+, HER2+ Chemotherapy 1/16/2014 AC + T (Taxol) Targeted Therapy 3/16/2014 Perjeta (pertuzumab) Targeted Therapy 3/17/2014 Herceptin (trastuzumab) Surgery 7/11/2014 Lymph node removal: Left, Underarm/Axillary; Mastectomy: Left Radiation Therapy 8/28/2014 Breast, Lymph nodes Targeted Therapy 9/22/2014 Kadcyla (T-DM1, ado-trastuzumab) Hormonal Therapy 11/17/2014 Zoladex (goserelin) Hormonal Therapy 1/31/2015 Femara (letrozole) Dx 1/7/2016, IDC, Stage IV, metastasized to brain Targeted Therapy 1/15/2016 Verzenio Radiation Therapy 7/27/2016 External: Brain Targeted Therapy 11/15/2016 Tykerb (lapatinib) Dx 3/23/2017, IDC, Stage IV, metastasized to liver Chemotherapy 3/28/2017 Xeloda (capecitabine) Chemotherapy 8/30/2017 Taxotere (docetaxel) Radiation Therapy 2/27/2018 External: Brain
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Sep 27, 2017 04:57PM 50sgirl wrote:

Kaayborg, I am sorry to hear that the progression was worse than expected. Telling your girls the reality of the situation must have been difficult for you, but as you have said, it was best for them to be aware. I hope and pray that things will turn around quickly with your new treatment. Although insurance companies can sometimes be rigid in their rules, your MO sounds like a person who will present a strong, valid and compelling argument for the approval of off-label use of immunotherapy in addition to eribulin for you. I am sure that you are still digesting all the information, worrying about the future, and holding your family close. No matter how much we know about this disease, nothing can truly prepare us for the news of progression. We are all here to support you. I am praying for you. Prayers are powerful things.Hugs to you and your loved ones.

Hugs and prayers from, Lynne


Dx 6/5/2015, ILC/IDC, Left, 3cm, Stage IV, metastasized to bone, ER+/PR+, HER2- Hormonal Therapy 6/10/2015 Arimidex (anastrozole) Dx 8/9/2016, ILC/IDC, Left, 3cm, Stage IV, metastasized to bone/liver/other, ER+/PR+, HER2- Hormonal Therapy 8/10/2016 Faslodex (fulvestrant) Targeted Therapy 8/31/2016 Ibrance (palbociclib) Hormonal Therapy 7/3/2018 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Chemotherapy 10/2/2018 Xeloda (capecitabine) Chemotherapy 2/11/2019 Taxol (paclitaxel) Hormonal Therapy 11/12/2019 Aromasin (exemestane) Targeted Therapy 11/13/2019 Afinitor (everolimus) Hormonal Therapy 12/27/2019 Femara (letrozole) Chemotherapy 3/8/2020 Adriamycin (doxorubicin) Targeted Therapy 2/6/2021 Verzenio Chemotherapy 4/13/2021 Halaven (eribulin)
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Sep 27, 2017 05:03PM marylark wrote:

Kaayborg,

Know you are in my prayers. It really hurts when we have to bring our kids into this reality. We want them to stay innocent of this pain.

I'm praying that all treatments are lined up and covered quickly and that this treatment combination works so well for you. I am also holding you and your family in prayer in this difficult time.

Mary

Dx 5/1/2015, IDC, Right, 5cm, Stage IIIA, Grade 3, ER+/PR+, HER2- Chemotherapy 5/13/2015 Taxol (paclitaxel) Chemotherapy 8/12/2015 AC Dx 4/2017, Stage IV, metastasized to bone Chemotherapy Taxol (paclitaxel) Radiation Therapy External: Bone Hormonal Therapy Faslodex (fulvestrant) Targeted Therapy Ibrance (palbociclib) Radiation Therapy Whole breast: Breast, Lymph nodes Hormonal Therapy Femara (letrozole) Hormonal Therapy Aromasin (exemestane) Targeted Therapy Afinitor (everolimus) Chemotherapy Xeloda (capecitabine)
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Sep 27, 2017 05:44PM nkb wrote:

Kaayborg- I am truly sorry you are in this situation. Talking to my kids has been painful, but, as you say-it is important for them to process this with you, through your eyes and relationship with them

Can you appeal to Merck to pay for Keytruda or Bristol-Myers Squibb to pay for Opdivo until your insurance company figures this out? I hate to have you delay while they cogitate. Your doctor may know a "rep" from one of these companies and just appeal directly.

Hoping for the best

Dx 12/2011, ILC, Both breasts, 6cm+, Stage IIIC, Grade 2, 34/40 nodes, ER+/PR+, HER2- Surgery 2/4/2012 Lymph node removal; Lymph node removal (Left): Underarm/Axillary; Lymph node removal (Right): Underarm/Axillary; Mastectomy; Mastectomy (Left); Mastectomy (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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Sep 27, 2017 06:09PM margaritams wrote:

Kaayborg, Zarovka, Momallthetime/Dani and all others who are having difficult days recently, I just wanted to say that although I rarely post/comment, I do nonetheless follow along fairly regularly. You are all so thoughtful, helpful, supportive and inspiring that I want to say that I am thinking of all of you, hoping for the best outcomes (!) and wishing you strength and fortitude as you face the latest challenges that this dreadful disease has thrown at you.

Warmly,

Margarita

Dx 5/2000, IDC, Left, Stage IIB, ER+ Dx 4/2015, IBC, Right, Stage IV, metastasized to bone/liver/other, Grade 3, ER-/PR-, HER2-
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Sep 27, 2017 07:25PM ShetlandPony wrote:

Kaayborg, it breaks my heart to think of you having to have that talk with your children. It must have been one of the hardest things ever. I'm clinging to hope for you. Your liver is still functioning ok, that is good. Your medical team needs to move heaven and earth to get that immuno approved for you, and the Her2 results -- the really sensitive tests. And Nkb's suggestions above are worth trying, too. I hope you have assigned someone to help with follow up as you need to be with your family and not on the phone. How I wish there was something I could do to help...

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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Sep 27, 2017 08:12PM ShetlandPony wrote:

Kaayborg, in the article you linked, it looks like two weeks of chemo primes the pump for the nivolumab, so the order you are getting them seems correct.

Openmind, I did the not-so-usual combo of Faslodex + Afinitor for four months. I felt quite good on it, better than on Ibrance + letrozole. Unfortunately the cancer stopped responding to endocrine treatment, but I still believe it was the best thing for me to try next. I wanted a dual therapy and one aromatase inhibitor had already failed. It seems to me that since your SIL has had lung trouble, she ought to start with a low dose of Afinitor if she decides to use it. It's good she is getting the tumor genomics.

Z, how amazing that this angel of a radiologist got you a same-day biopsy. If something is not against the laws of physics, there ought to be a way to make it happen when it needs to happen. Will you get genomic testing from the biopsy?


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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Sep 27, 2017 09:49PM Openmind wrote:

ShetlandPony, thank you for your input on Afinitor+Faslodex.

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Sep 27, 2017 11:38PM JFL wrote:

Kaayborg, my heart dropped when I read your post. The conversation with the kids must have been very difficult. I pray for the things in your post and that each treatment will work long enough to get you to the next one available.

Chart your own course. Dx at 30. Dx with mets at 38 while pregnant - extensive liver & bone involvement. Currently on Enhertu & XGeva. ER+/PR+, HER2-low (IHC equivocal, +2/FISH negative). Y90 liver radioembolization in 2018. Dx 9/2006, IDC, Right, 1cm, Stage IIB, Grade 3, 1/16 nodes, ER+/PR+, HER2-, Surgery 9/22/2006 Mastectomy: Left, Right Chemotherapy 11/6/2006 Adriamycin (doxorubicin), Cytoxan (cyclophosphamide), Taxotere (docetaxel) Hormonal Therapy 3/15/2007 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Dx 12/2014, IDC, Stage IV, metastasized to bone/liver/other, Grade 3, ER+/PR-, HER2- Surgery 12/26/2014 Prophylactic ovary removal Hormonal Therapy 12/26/2014 Aromasin (exemestane), Faslodex (fulvestrant) Targeted Therapy 6/18/2015 Ibrance (palbociclib) Chemotherapy 3/10/2016 Xeloda (capecitabine) Hormonal Therapy 5/14/2017 Aromasin (exemestane) Targeted Therapy 5/14/2017 Afinitor (everolimus) Chemotherapy 8/18/2017 Abraxane (albumin-bound or nab-paclitaxel) Chemotherapy 3/23/2018 Doxil (doxorubicin) Chemotherapy 4/26/2019 Navelbine (vinorelbine) Hormonal Therapy 4/26/2019 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Chemotherapy 11/27/2019 Gemzar (gemcitabine) Hormonal Therapy 8/25/2020 Faslodex (fulvestrant) Targeted Therapy 8/25/2020 Piqray (alpelisib) Targeted Therapy 10/2/2020 Enhertu (fam-trastuzumab deruxtecan-nxki)

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