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 22, 2017 07:42AM 50sgirl wrote:

Z, I am sorry to hear about your progression. Take some time and rant, mourn, have a pity party or whatever you need to do. As you well know, there are lots of other treatments available. When will you and your MO settle on your next treatment plan?

Hugs and prayers, Lynne

Dx 6/5/2015, ILC/IDC, Left, 3cm, Stage IV, metastasized to bone, ER+/PR+, HER2- Hormonal Therapy 6/9/2015 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 8/30/2016 Ibrance (palbociclib) Hormonal Therapy 7/2/2018 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Chemotherapy 10/2/2018 Xeloda (capecitabine) Chemotherapy 2/10/2019 Taxol (paclitaxel) Hormonal Therapy 11/12/2019 Aromasin (exemestane) Targeted Therapy 11/13/2019 Afinitor (everolimus) Hormonal Therapy 12/26/2019 Femara (letrozole) Chemotherapy 3/8/2020 Adriamycin (doxorubicin) Targeted Therapy 2/6/2021 Verzenio Chemotherapy 4/12/2021 Halaven (eribulin)
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Sep 22, 2017 07:54AM Grannax2 wrote:

Z From no uptake to numerous liver mets with uptake in 5 months. That news made me stop breathing. I can imagine how you feel, because I could be right there with you in 5 months, but I won't claim to know how you feel.

I know you have lots of things in your "back pocket" because of your research. Did your MO give you his advice?

I have no words except to say I'm praying for you as you make difficult decisions.

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Sep 22, 2017 08:10AM PHOTOGIRL-62 wrote:

Z, I'm so sorry you have this progression. It really sucks to have to start another TX. I think you now, but my DH is a Radiologist. His 68 and did his internships and residence at Harvard so in my opinion he's a real smarty and from the old school when Docs were kind and caring. He's the best and always goes over all of my medical stuff. Slightly OCD. So this morning when I read your post asking if anyone knew what portahepatic adenopathy was he wrote it down so I could help you. He reads CTs and everything else so he knows. These are his words he wrote down for me "Porta hepatis adenopathy is enlarged or abnormal lymph nodes near where the vessels enter the liver and where the gallbladder and common bile duct sit adjacent to the liver."

I hope this helps you understand you are so smart I love reading your posts, but if you ever have any questions let me know and I will ask the good doctor. He enjoys when I ask him always willing to answer questions.

I'm sending you hugs and vibes to keep your spirits up. I have such anxiety all the time so I know how you feel. Keep us posted on your next TX.

Love,

Anita

Dx 10/30/2008, IDC, Right, 2cm, Stage IIA, Grade 1, 0/3 nodes, ER+/PR+, HER2- Dx 8/24/2016, IDC, Right, Stage IV, metastasized to bone, ER+/PR+, HER2- Hormonal Therapy Faslodex (fulvestrant) Targeted Therapy Ibrance (palbociclib)
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Sep 22, 2017 08:24AM hartrish wrote:

Z, so sorry to hear your news. Please let us know what you decide on treatment. Keeping you in my thoughts and prayers

Dx 3/9/2015, ILC, Right, 1cm, Stage IA, Grade 2, 0/5 nodes, ER-/PR-, HER2-, Dx 3/9/2015, ILC, Left, 1cm, Stage IA, Grade 2, 0/1 nodes, ER+/PR+, HER2-, Surgery 4/15/2015 Mastectomy: Left, Right; Reconstruction (left): DIEP flap; Reconstruction (right): DIEP flap Chemotherapy 7/8/2015 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Dx 8/29/2017, ILC, Stage IV, metastasized to liver, ER-/PR-, HER2-, Chemotherapy 9/8/2017 Carboplatin (Paraplatin), Gemzar (gemcitabine) Chemotherapy 9/11/2019 Xeloda (capecitabine)
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Sep 22, 2017 09:36AM zarovka wrote:

I got the results yesterday. I haven't talked to my local MO since seeing the results online, but her treatment protocol after ibrance/letrozol fails would be faslodex alone. Faslodex is a reasonable option as well as the NCI standard of care for second line treatment. I can see going on faslodex at some point, but any hormone suppression strategy is really just kicking the can down the road while living scan to scan, as Kathy described so well.

Hormone suppression has been hard and is undermining my overall well-being while Ibrance slams my immune system, ultimately making me more vulnerable to this evolving beast. I think there are only two strategies that could potentially give me years rather than months on a line of treatment and those are oncolytics and immunotherapy. Oncolytics involves unleashing engineered viruses on your cancer and is early stage everywhere in the world, so that leaves immunotherapy.

I would be on a plane to the NIH to be vetted for their remarkable suite of immunotherapy trials if I had not found a solid option in Japan in a clinical setting. I feel there are advantages to getting treated in a clinical setting, and my daughter is fascinated with Japan. Every school project since she was 8 has been about Japan. I'd like to believe that my little munchkin has been leading me to a good treatment option.

Anita - Thank you for that explanation as it is clearer than what I get from the web. It doesn't mean the vessels are obstructed, it just means there is a risk.

>Z<

Ibrance/Letrozol Feb '16 -Sep '17. Adoptive Cell Therapy Oct 2017. Jan 2018 SBRT to sternum met and liver mets. Jan 2018 start Faslodex. Dx 12/28/2015, IDC, Left, 4cm, Stage IV, metastasized to bone/liver, Grade 3, ER+/PR-, HER2- Hormonal Therapy 1/17/2016 Femara (letrozole) Targeted Therapy 2/2/2016 Ibrance (palbociclib)
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Sep 22, 2017 11:31AM Blume wrote:

Z so very sorry to hear of your progression. Whether you go for Faslodex or the immunotherapy trials in Japan next, I know it will be the right thing for you, well researched and considered, your posts are also so enlightening.

Dx 7/24/2010, Left, 3cm, Stage IA, Grade 2, 0/1 nodes, ER+/PR+, HER2- Surgery 7/31/2010 Lumpectomy: Left Chemotherapy 9/1/2010 Other Radiation Therapy 1/4/2011 Whole breast: Breast Hormonal Therapy 3/3/2011 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Hormonal Therapy 9/4/2014 Arimidex (anastrozole) Dx 3/15/2017, Stage IV, metastasized to bone/liver/other, ER+/PR+, HER2- Chemotherapy 3/15/2017 Taxol (paclitaxel) Radiation Therapy 4/19/2017 External: Bone Hormonal Therapy 7/25/2017 Femara (letrozole) Targeted Therapy 7/25/2017 Ibrance (palbociclib)
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Sep 22, 2017 11:51AM Max_otto wrote:

Z,

What does Japan offer in a clinical setting that you would choose this over a another hormonal treatment or a NIH trial?

How would you handle follow up treatment or care?

All of us would like to stop this invasion into our liver, I find it emotionally rough , knowing chemo is down the line. One plus of faslodex , my blood work is back to normal.

Thanks for your research, I appreciate your effort and time.

Kathy


Dx 4/2015, Right, Stage IV, ER+/PR+, HER2-
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Sep 22, 2017 11:55AM - edited Sep 22, 2017 11:58AM by NO1-2NV

>Z<

I was sorry to read about your progression and was wondering how this news would effect your Japanese plans. Waiting to talk to the MO can sometimes be as bad as waiting for the CT results to be posted through the online portal. Let's hope that conversation happens soon.

I also got my CT results yesterday. Unfortunately, Ibrance and Faslodex have failed me after just a few months. I too have progression in my liver and a new met at T9. I suspect my MO will be calling me today to let me know that "Houston, we have a problem". I am guessing that Xeloda will be in my very near future with possible rad to the T9 met. I had so hoped for a long run on Ibrance and Faslodex. I also have a mild pleural effusion AND bibasilar atelectasis. Sheesh....really! My guess is that the mild pleural effusion is placing just enough pressure on my lungs to cause the bibasilar atelectasis. I should probably start to rethink the elevation that we live and play at.

Since there are no clinical trials for MBC currently going at our Cancer Center I may start to look out on the west coast. I have lots of family out there so going out for treatment might be a possibility.

Hugs to you and prayers to all.

Dx 8/3/2011, IDC, 5cm, Stage IIB, Grade 3, 1/3 nodes, mets, ER+/PR+, HER2- Radiation Therapy 3/1/2012 Whole breast: Breast, Lymph nodes, Chest wall Hormonal Therapy 4/29/2012 Arimidex (anastrozole) Dx 12/6/2015, IDC, Stage IV, metastasized to bone/liver, ER-/PR+, HER2- Radiation Therapy 12/20/2015 External: Bone Chemotherapy 5/19/2016 Doxil (doxorubicin) Hormonal Therapy 5/12/2017 Faslodex (fulvestrant) Targeted Therapy 6/30/2017 Ibrance (palbociclib) Chemotherapy 10/17/2017 Xeloda (capecitabine)
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Sep 22, 2017 12:06PM zarovka wrote:

Kathy - I will write up what I am doing and why and what is involved. Not ignoring you just scrambling to get a liver biopsy this afternoon, if you can believe it. Ms. Ready for Everything was not ready for that.

>Z<

Ibrance/Letrozol Feb '16 -Sep '17. Adoptive Cell Therapy Oct 2017. Jan 2018 SBRT to sternum met and liver mets. Jan 2018 start Faslodex. Dx 12/28/2015, IDC, Left, 4cm, Stage IV, metastasized to bone/liver, Grade 3, ER+/PR-, HER2- Hormonal Therapy 1/17/2016 Femara (letrozole) Targeted Therapy 2/2/2016 Ibrance (palbociclib)
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Sep 22, 2017 12:58PM marylark wrote:

Z I'm keeping you in my prayers as you head to new treatment. I will follow closely as you head to Japan. Know we are all in your corner.

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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