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 04:02PM

Posted on: Aug 16, 2013 04:02PM

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 11:24PM zarovka wrote:

Shetland and everyone - Thank you for continuing to think of me. My local onc is sending the liver out for the Caris Molecular Intelligence test. For some reason my doc prefers it. I pretty much ran her over with the liver biopsy as well as by going to Japan for treatment and declining (for the moment) faslodex, so I let her make the call on the genetics testing. The more I study it, the more I like the Caris test, so chalk one up for the old MO. It does immuno-histochemistry which could be helpful with my treatment here in Japan. Curious if anyone has opinions on Caris vs Foundation One

I am in Japan but my treatment so far has consisted of going to a temple per day and lighting incense or a candle for us all. We have a one temple per day cap during this trip as there are quite a few and there is a limit to what a 11 year old can take, temple-wise. Between temples we just marvel at the differences in ... everything. In this picture my daughter gets her self a beer for breakfast from the beer vending machine ...

We are taking this week to get ourselves settled in, learning the train and bus system and figuring out currency, shopping for food and necessities and generally setting up our routine. We'll be here five weeks total and I didn't want to be jet lagged, confused and stressed while also dealing with medical treatment in a foreign country. Japan is meticulously clean and safe, unlike the places around the world I have lived, but it is more foreign, perhaps less americanized. Glad to have this week to figure things out.

>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 1/16/2016 Femara (letrozole) Targeted Therapy 2/2/2016 Ibrance (palbociclib)
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Sep 28, 2017 02:55AM LindaE54 wrote:

kaayborg - I'm so sorry to read your post. Keeping you and your family lifted in prayer.

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 12/18/2013 External: Bone Hormonal Therapy 12/29/2013 Femara (letrozole) Hormonal Therapy 5/27/2014 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Radiation Therapy 5/28/2014 External: Bone Radiation Therapy 8/27/2014 External: Bone Hormonal Therapy 9/24/2014 Femara (letrozole) Radiation Therapy 12/13/2014 External: Bone Hormonal Therapy 2/16/2017 Faslodex (fulvestrant) Chemotherapy 5/14/2017 Taxol (paclitaxel) Radiation Therapy 6/4/2017 External: Bone Chemotherapy 10/2/2017 Ellence (epirubicin) Chemotherapy 10/22/2017 CEF Chemotherapy 12/27/2017 Halaven (eribulin)
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Sep 28, 2017 08:28AM - edited Sep 28, 2017 10:09AM by NO1-2NV

Kaayborg, I am sorry you are having to deal with this mess. As far as insurance goes...by any chance do you have a nurse case manager with your insurance company? If so call them immediately and explain what is happening. If you do not have one call the customer service number on the back of your insurance card and tell them you need one immediately and ask that they call you before the end of the day. Nurse case managers are responsible for coordination of care between all parties (you, your doctor, and the insurance company), and they are also your eyes and voice behind the scenes. Next, do you have private or government insurance? If you have private insurance, immediately call the Ohio state insurance commission and get the phone number for your state insurance ombudsman. Call their office and let them know your situation and that you need help.

If you have government insurance: for Medicaid, call the Ohio state Medicaid office and ask for help. Each state is a little different but they may have a Medicaid ombudsman that the Medicaid office will refer you to or will assign you a case worker who will immediately start working for you. If you have Medicare, contact the office for Medicare for your area. You can find the phone number on the web by typing in Medicare and your state. If the insurance company denies the request, immediately demand a fair hearing. Depending on the insurance company either you or your MO's office on your behalf will need to request this. The insurance company may require a peer-to-peer with your MO and one of their medical directors prior to a request for a fair hearing.

I know this is a lot of information and instruction but you need to get answers now and not a week from now. The above referenced nurse case managers are NOT the same as a navigator associated with your MO's clinic/office. Two different missions in scope. They do work together from time to time but they are not one in the same.

Praying for you and your family and that you get answers ASAP.

Dx 8/3/2011, IDC, 5cm, Stage IIB, Grade 3, 1/3 nodes, mets, ER+/PR+, HER2- Radiation Therapy 2/29/2012 Whole breast: Breast, Lymph nodes, Chest wall Hormonal Therapy 4/28/2012 Arimidex (anastrozole) Dx 12/6/2015, IDC, Stage IV, metastasized to bone/liver, ER-/PR+, HER2- Radiation Therapy 12/19/2015 External: Bone Chemotherapy 5/18/2016 Doxil (doxorubicin) Hormonal Therapy 5/11/2017 Faslodex (fulvestrant) Targeted Therapy 6/29/2017 Ibrance (palbociclib) Chemotherapy 10/16/2017 Xeloda (capecitabine)
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Sep 28, 2017 09:09AM cure-ious wrote:

Kaayborg- Telling your girls was very wise- we will all die one day, as they know, and to be able to talk to ( and hug) your mom while she is still alive is beyond precious.But I also never give up. Are you in suffiiciently fit shape to take on a clinical trial? Brain mets? There is some kick-ass stuff out there, when you have a biopsy results and suggestion for treatment, please post again and carefully consider all of your options.

Z- More pics, please!! I already want to go back to Japan, and was just there 2 years ago! Are you in Tokyo or Kyoto?

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 28, 2017 09:38AM lalady1 wrote:

Z - more pics please. Tokyo is rather daunting at first, but I'm confident you and your savvy daughter will learn the system. I have many fond memories (and a few not so fond) of working in that rather chauvinistic country. :) Please visit Kyoto on the bullet train. Take it slow and please share all. I am following you with interest, as I am considering this process too. You are an inspiration to us all. My onc surprised me during my Tuesday Abraxane drip and we agreed to scan second week of Nov and see her on 14th to decide; more A train chemo or switch to X. Surprisingly I am leaning towards more chemo to knock it down to NEAD or as low as possible. Then move to Xeloda as I have booked a British Isles cruise at the end of May. Going first class and blowing the rest of my FF miles - wee! My sister will come too, but in premium economy as she is a sensible RN. lol FYI, I have updated my will and trust for peace of mind. Thrilled to be paying first year of college via 529 plan for my niece who is starting Biomedical engineering at ASU in August (we need more female engineers!), and getting my nephew in Montesorri next week. Giving now allows me to see fruits of my many years of working/savings. Condo will be paid off when I pass, which makes me smile. Suzi Orman was right; people first, then money. I am still working from home, planning to return in Nov part time. Kaay - you are in my thoughts. Cure-ious what meds are you on now? Has anyone left Abraxane and moved to X and when it fails returned to Abraxane? Or do most try another chemo?

(()) C

Surgery 1/29/2013 Mastectomy: Left; Reconstruction (left): Tissue expander placement Radiation Therapy 9/8/2013 Breast, Lymph nodes Hormonal Therapy 1/6/2016 Arimidex (anastrozole), Faslodex (fulvestrant) Targeted Therapy 1/6/2016 Ibrance (palbociclib) Targeted Therapy 5/16/2017 Afinitor (everolimus) Chemotherapy 8/14/2017 Abraxane (albumin-bound or nab-paclitaxel) Dx IDC, Left, Grade 3, 1/1 nodes, ER+/PR+, HER2-
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Sep 28, 2017 09:39AM nkb wrote:

Z- wonderful picture! The vending machines are a fun part of Japan. What neighborhood will you be staying in? I hope you feel well enough to keep exploring after the treatment starts. Cat cafes.

Kaayborg- thinking of you. Lots of good advice from NO1-2NV to get a nurse case manager working immediately. I would pull out all the stops to get the medication and see who can speed this up for you.

Dx 12/2011, ILC, Both breasts, 6cm+, Stage IIIC, Grade 2, 34/40 nodes, ER+/PR+, HER2- Surgery 2/3/2012 Lymph node removal; Lymph node removal (Left): Underarm/Axillary; Lymph node removal (Right): Underarm/Axillary; Mastectomy; Mastectomy (Left); Mastectomy (Right) Chemotherapy 2/27/2012 AC + T (Taxol) Radiation Therapy 9/10/2012 Hormonal Therapy 10/20/2012 Arimidex (anastrozole) Dx 5/2017, ILC, Stage IV, metastasized to bone, ER+/PR-, HER2- Hormonal Therapy 5/31/2017 Faslodex (fulvestrant) Targeted Therapy 5/31/2017 Ibrance (palbociclib) Targeted Therapy 3/12/2019 Afinitor (everolimus) Hormonal Therapy 3/12/2019 Aromasin (exemestane) Chemotherapy 3/9/2020 Xeloda (capecitabine)
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Sep 28, 2017 09:55AM cure-ious wrote:

Hi LaLady!!

You are ahead of me, I still have no will set up (playing chess with Mr. Death). Instead initiated a lawsuit to try to improve things for female STEMers at our place, and so far to great success. FYI, there is a system in the UK that has made a huge difference there- all universities and research institutes have to get rated every four years (like Moodys) except it is on the basis of gender metrics (what fraction of your workforce is female? Pay equality? Committee/leadership opportunities? Daycare support? bonuses? Retirement packages? etc) - and the kicker is, they are not eligible to apply for research grants unless they have at least a silver rating. Provides a direct incentive to the administration to strongly bolster their female contingent. The system will go on trial at 8-9 (anonymous) institutions in the US starting next month. Wont' be without problems, and I think congress would have to approve it for the NIH. So, for our girls, real change is coming!!

I am still Ibrance/Femara, cycle 25. Maybe will go for Abemaciclib-Faslodex on progression, but definitely would have to be stronger if it shows up in the liver. And I don't want to wait too long to get some immunotherapy added in, so I'm also watching Z, like a hawk.

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 28, 2017 10:37AM nkb wrote:

Cure-ious- bravo for your work with gender equality in STEM. I just heard a bit of an interview with Melinda Gates who said gender equality is far worse than when she was working. She did say that she thought the current trend toward exposing what is going on was going to help. Men need incentives to move out of the old boys network and rules to guide them. (they just don't get it otherwise)

Do you think that there is a subset of people who are actually killing cancer with the Ibrance/Faslodex or femara vs just causing a big pause that will eventually mutate and recur-or just that the pause is longer for some people. Would you switch to Abemiciclib because you thought it was a better drug or just a different one. Which immunotherapy are you considering? Seems like the future will be adding the immunotherapy to Ibrance/hormonal right from the beginning. I am early in research of all this however.

Dx 12/2011, ILC, Both breasts, 6cm+, Stage IIIC, Grade 2, 34/40 nodes, ER+/PR+, HER2- Surgery 2/3/2012 Lymph node removal; Lymph node removal (Left): Underarm/Axillary; Lymph node removal (Right): Underarm/Axillary; Mastectomy; Mastectomy (Left); Mastectomy (Right) Chemotherapy 2/27/2012 AC + T (Taxol) Radiation Therapy 9/10/2012 Hormonal Therapy 10/20/2012 Arimidex (anastrozole) Dx 5/2017, ILC, Stage IV, metastasized to bone, ER+/PR-, HER2- Hormonal Therapy 5/31/2017 Faslodex (fulvestrant) Targeted Therapy 5/31/2017 Ibrance (palbociclib) Targeted Therapy 3/12/2019 Afinitor (everolimus) Hormonal Therapy 3/12/2019 Aromasin (exemestane) Chemotherapy 3/9/2020 Xeloda (capecitabine)
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Sep 28, 2017 02:56PM - edited Sep 28, 2017 03:34PM by lisbet54

I had the appointment at the hospital today. Unfortunately I had to face one of the young most un-empathetic doctors. As I had expected I'm finished with faslodex/ibrance. After only 3 cycles. And finished with all hormone-related treatments! Cancer has outsmarted them all in no time!

I got the choice between taxol or epirubicin. With taxol I will have to drive the long road to the hospital twice a week, once for the blood work and once for the treatment. If I wanted to come less often I could choose epirubicin - but only 9 cycles as it causes permanent damage to the heart pump. I was heartbroken and chocked that this is going to be my life from now on. I was informed of SE of both treatments, both the temporary and the permanent damages of the treatments.

I tried to suggest other treatments, but the doctor dismissed them all. I was not offered xeloda though that would spare me from the much driving. Operation and freezing/heating are not possible because the metastases are all over the liver. Regional chemo is not done in Denmark. Only chemo-treatments left for me - so soon. I have only been stage 4 since June - and already finished with so many treatments!

The doctor said I was absolutely welcome and free to opt out of it all - that was my choice! If I wanted I could get a scan in 3 month and I could always come back and choose the treatments should I want to do so. He blabbered all this out even though I had not even insinuated that I had this on my mind. When I started crying he became very irritable! I left without any appointment. Right now I'm in a very dark place!

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 28, 2017 03:46PM Kandy wrote:

Kaaborg, my heart goes out to you. I'm in a similar situation where nothing is slowing this beast down. It's scary, isn't it. I do pray they find something that helps you quickly. I admire you at your strength to be able to talk with your girls. I have a 26yo with Down syndrome, at some point I will have to talk to her. It terrifies me. My thoughts and prayers are with you.

Dx 1/20/2009, IDC, 1cm, Stage IIIA, Grade 3, 4/9 nodes, ER+/PR+, HER2- Surgery 2/25/2009 Lumpectomy: Left; Lymph node removal: Left, Underarm/Axillary Chemotherapy 3/8/2009 Adriamycin (doxorubicin), Cytoxan (cyclophosphamide), Gemzar (gemcitabine), Navelbine (vinorelbine) Radiation Therapy 10/6/2009 Breast, Lymph nodes Hormonal Therapy 1/3/2010 Arimidex (anastrozole) Dx 10/31/2013, IDC, Stage IV, Grade 3, ER+/PR+, HER2- Radiation Therapy 11/17/2013 3DCRT: Bone Hormonal Therapy 12/2/2013 Faslodex (fulvestrant) Targeted Therapy 10/7/2016 Afinitor (everolimus) Hormonal Therapy 10/31/2016 Aromasin (exemestane) Chemotherapy 2/1/2017 Abraxane (albumin-bound or nab-paclitaxel) Chemotherapy 5/8/2017 Carboplatin (Paraplatin) Chemotherapy 8/14/2017 Halaven (eribulin) Targeted Therapy

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