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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.

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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 25, 2017 11:48AM - edited Sep 25, 2017 11:58AM by lisbet54

Hi again, I need advice. I wrote here a couple of weeks ago - very anxious about liver pains and additional pains in my left side. I am newly diagnosed stage 4 with liver mets (as of May 2017) and have been on Faslodex/Ibrance since July. I have anxiously waited for the results of my first scan after starting treatment. I had the scan last week and have a scheduled appointment with an oncologist (not MY oncologist - as I always see a new one due to the public health care system in DK) this Thursday.

I just made the TERRIBLE mistake of going to my electronic medical log where all test-results are stored just to see my blood work results. However, the scan results were already there and accidentally I read them. It turns out that there is a huge progression in the number of liver mets. From several rather small lesions, the metastases have now grown to fill up one third of the right hepatic lobe + additional mets in the left. Besides that it seems that now the bones in my lower back have also been attacked. I'm in chock but not surprised. I have had so terrible pains in my liver – like knives turning around. And though I hoped it was a symptom of 'dying metastases' as some have suggested, I could hardly believe that.

I know from this forum that Ibrance can take up to 5-6 cycles to work. However, with this kind of progression on Faslodex/Ibrance would it not be wise to go to another kind of drug - or should I give it more time?

What kind of drug could be the next step after Ibrance/Faslodex (Letrozole has already failed me)?

Dx 4/2001, ILC, Left, Stage IIA, Grade 3 Dx 5/2008, LCIS/DCIS, Left, 2cm, Stage IIIA, Grade 3, 9/18 nodes, ER+, HER2- Dx 5/2014, LCIS/ILC, Left, 1cm, Stage IIIC, Grade 3, ER+, HER2- Hormonal Therapy 2/28/2015 Femara (letrozole) Dx 6/2017, LCIS/DCIS/ILC, Stage IV, metastasized to liver, ER+, HER2- Hormonal Therapy 7/4/2017 Faslodex (fulvestrant) Targeted Therapy 7/4/2017 Ibrance (palbociclib) Chemotherapy 10/25/2017 Taxol (paclitaxel) Hormonal Therapy Arimidex (anastrozole), Aromasin (exemestane) Surgery Lumpectomy: Left; Lymph node removal: Left, Sentinel, Underarm/Axillary; Prophylactic ovary removal Surgery Mastectomy: Left Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Sep 25, 2017 12:28PM lalady1 wrote:

Lisbet - Sorry to read your post. I have ER+/HER- like you, I was on Ibrance + faslodex for 18 months before it failed. FYI at round 12 it killed all sternum mets and my lone lung met. After some progression to bone along with liver uptake, I tried Afinitor, but that failed too. Your onc may put you on Afinitor which is taken with an AI, and you may respond. However, for liver progression Xeloda is often next. Please speak with your onc. asap as all of us are different, but It is likely you will be switched due to major liver progression. There are also Y90 treatments, etc which you may be a candidate for. I will let the more savvy liver mets ladies add thoughts. Sending a gentle hug. Held og lykke.

(()) Claire with some Danish roots


Surgery 1/30/2013 Mastectomy: Left; Reconstruction (left): Tissue expander placement Radiation Therapy 9/9/2013 Breast, Lymph nodes Hormonal Therapy 1/7/2016 Arimidex (anastrozole), Faslodex (fulvestrant) Targeted Therapy 1/7/2016 Ibrance (palbociclib) Targeted Therapy 5/17/2017 Afinitor (everolimus) Chemotherapy 8/15/2017 Abraxane (albumin-bound or nab-paclitaxel) Dx IDC, Left, Grade 3, 1/1 nodes, ER+/PR+, HER2-
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Sep 25, 2017 01:23PM 50sgirl wrote:

Lisbet, I am sorry to hear about your progression. I know how shocked you are, and how confusing it can be. I think that my MO will put me on Xeloda when I see more progression in my liver. It seems to work well for many people on these threads. There is a Xeloda thread, as you might already have discovered. It will give you lots of advice and information. I do read that thread as well as the Affinitor thread on a regular basis so I will be well-informed about SEs when it comes time for me to change treatment. I think it will keep me armed with questions for my MO. Xeloda's most common SE Is hand/foot syndrome. Many people on the Xeloda thread recommend lotions to help prevent and treat it, and they also say that a reduced dose can help. Some doctors prescribe taxol instead of Affinitor or Xeloda. It seems that many dr's prefer this if someone has pain or other physical symptoms or very quick, extensive progression. (Actually, that is just my opinion of their thinking from what I have read. Obviously, I have no medical background, so take these tidbits of information with that in mind.) if I remember correctly, you recently had a liver biopsy, so that is good. I am not sure if treatments are different in Denmark. Let us know what you learn at your appointment on Thursday. There are many effective treatments available, so focus on that.

Sending you hugs and prayers.

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 25, 2017 08:11PM Liwi wrote:

Lisbet I am so sorry to read of you progression. I am also new to Ibrance/Faslodex, just started in August, so I don't have much information to to provide, just want to let you know I thinking of you and sending good wishes.
Dx 9/2014, ILC, Left, 4cm, Stage IIB, Grade 2, ER+/PR+, HER2- Chemotherapy 10/23/2014 AC + T (Taxol) Dx 4/2015, ILC, Left, 6cm+, Stage IIIA, Grade 2, 3/3 nodes, ER+/PR+, HER2- Surgery 4/2/2015 Lumpectomy: Left; Lymph node removal: Sentinel Hormonal Therapy 4/20/2015 Arimidex (anastrozole) Radiation Therapy 5/6/2015 Dx 7/2017, ILC, Stage IV, metastasized to liver, ER+/PR+, HER2- Hormonal Therapy 8/10/2017 Faslodex (fulvestrant) Targeted Therapy 8/10/2017 Ibrance (palbociclib) Dx 8/1/2018, ILC, Stage IV, metastasized to other, ER+/PR-, HER2- Chemotherapy Doxil (doxorubicin)
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Sep 25, 2017 10:08PM kaayborg wrote:

Lisbet, I am so sorry you are facing this news. That sounds like sizable progression. My guess is your onc will put you on something else to get the disease under control more quickly. I am quitting Xeloda without even giving it a full cycle because it's just not doing the job fast enough. Hoping eribulin can do something for me. It's important to keep the liver happy. Keep us posted on what you find out.

My appointment is tomorrow. Had scans today but no results. An email with description of my ever expanding hard stomach and reduced appetite was enough to put my onc in full swing...scans ordered, biopsy ordered, US guided tap ordered (just in case), eribulin insurance approval ordered as well as opdivo off-study. I wasn't expecting all that. Just thought I'd give heads up to help her prep for my appointment following up about Xeloda and now I'm starting eribulin tomorrow instead. I feel comforted that she's so on it, but all the immediacy makes me feel I'm in serious trouble if something doesn't pan out fast. Fingers crossed that those scans aren't as bad as I fear they may be. Can't ever get over how fast things can change with this craptastic disease.

Dx 6/24/2014, IDC, Left, 1cm, Stage IA, Grade 3, 0/3 nodes, ER-/PR-, HER2- Surgery 7/16/2014 Lumpectomy: Left Chemotherapy 8/21/2014 AC + T (Taxol) Surgery 1/4/2015 Mastectomy: Left, Right; Prophylactic mastectomy: Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Surgery 3/31/2015 Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Dx 7/24/2015, 6cm+, Stage IV, Grade 3, ER-/PR-, HER2- Chemotherapy 8/4/2015 Carboplatin (Paraplatin), Gemzar (gemcitabine) Chemotherapy 6/21/2016 Carboplatin (Paraplatin) Chemotherapy 9/13/2017 Xeloda (capecitabine) Chemotherapy 9/25/2017 Halaven (eribulin) Targeted Therapy 11/14/2017 Chemotherapy 2/6/2018 Gemzar (gemcitabine)
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Sep 25, 2017 10:59PM cure-ious wrote:

Kaay- Opodivo is that the first time you've had immunotherapy? with triple-negative the response rate has been relatively high, and I think better when treating progression, and better when in combination with some other kind of therapy. So, this therapy might work well! And also if you have BRCA-mutant cancer, then PARP inhibitor with immuno is attractive, and Syros is coming out with a CDK7 inhibitor that looks good (check for trials they just started) but really with triple-negative, I think I'd ask for some version or another of immunotherapy with any and every drug I was taking, just in case of hitting a synergy- good luck!!

Dx 10/2003, IDC, Stage IIB, ER+/PR+, HER2- Dx 7/2015, Stage IV, metastasized to bone, ER+/PR-, HER2-
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Sep 25, 2017 11:57PM momallthetime wrote:

Kaayborg, WTH seriously...but i must say i love your Onco, gr8 work!!! Action, action that's what's needed. Someone that gives a damn. Fingers crossed for good scans. Tip about Ixempra - low platelets...low wbc...gotta watch those BT's. Dani was on it at the beginning of the year. But doable.

Lisbeth so sorry you gotta deal with this progression. Taxol has worked for many ladies. Hope Onco figures it out real fast.


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Sep 26, 2017 12:31AM momallthetime wrote:

Well Dani is right now at the ER, i was called for emergency baby sittiing. Blood in the urine, clots... She hasn't seen a doc yet. She had this a week ago, but no clots, now was with clots. I just sent a message in the portal to the docs office. When we called docs # and it says press 0 for emergency, well anyway, the doc on call didn't call back, receptionist said he's behind calls. I wrote on the portal, that when a patient is bleeding and calls the emergency # a doc should call back, and if he can't he should have someone call back. She headed there not waiting for their call back, that's for sure. Maybe it's a kidney stone, who knows...I hope it's not more tumors...I wrote it's incompetent of them. So if this is messed up she might start to get to another wagon earlier than expected. In the trials, they don't allow any other care, so if she will need something she's off it. Gonna be a long night. Let you know tomorrow.
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Sep 26, 2017 01:13AM JFL wrote:

Mom, I pray that the hospital is able to figure out what is going on with Dani's symptoms. Very smart for her to head there and not wait for a call back. So shady about doctor's emergency call line. That is unreal.

Lisbet, Xeloda is a likely choice for you given your history and liver progression. It works particularly well for liver mets as it is taken in an inactive form and then becomes active in the liver and in tumor cells. Keep in mind easy come, easy go. Mets that crop up quickly also tend to die quickly! Keep us posted on what the MO recommends.

Kaay, your MO is all over it! So great to know there are good ones out there. I hope Halaven gets your liver back into its old self in no time.
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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Sep 26, 2017 06:23AM LindaE54 wrote:

Kaay - I like the fact that your MO is being proactive. It's scary I know, I was in your shoes in May, things moved so fast my head was spinning. I will be thinking of you today.

Lisbet - best wishes with your next tx.

Linda - dx at 54. Decision to stop all treatments on 9 Jan 2018 Dx 11/26/2013, IDC, Left, 1cm, Stage IV, metastasized to bone/liver/other, Grade 3, mets, ER+/PR+, HER2- Radiation Therapy 12/19/2013 External: Bone Hormonal Therapy 12/30/2013 Femara (letrozole) Hormonal Therapy 5/28/2014 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Radiation Therapy 5/29/2014 External: Bone Radiation Therapy 8/28/2014 External: Bone Hormonal Therapy 9/25/2014 Femara (letrozole) Radiation Therapy 12/14/2014 External: Bone Hormonal Therapy 2/17/2017 Faslodex (fulvestrant) Chemotherapy 5/15/2017 Taxol (paclitaxel) Radiation Therapy 6/5/2017 External: Bone Chemotherapy 10/3/2017 Ellence (epirubicin) Chemotherapy 10/22/2017 CEF Chemotherapy 12/27/2017 Halaven (eribulin)

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