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 IV or Mets.

Posted on: Aug 16, 2013 05:02PM

Posted on: Aug 16, 2013 05:02PM

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 23, 2017 07:31AM Wendy3 wrote:

Wow Z what a whirl wind. First off progression always sucks bad, but we regroup and continue. I'm so happy you had that luck today to run into a caring doctor, you're right they are few and far between but so important to our survival. I'm a big believer in signs and Japan seems to be a place you need to go to. Sometimes we are pushed towards something and we need to heed the signs. I get also told multiple lesions blah hate the word multiple be more specific. You have so much knowledge and that is power. Faslodex is easy I did it for nine months. The nicest part about faslodex is that it didn't make me want to kill my family lol. Other hormonal were awful and made me so angry . There is also always chemo I don't recall but I don't think you've jumped into that boat yet have you? I wish you the best results whatever you decide.

Doesn't a liver biopsy leave you with a lot of pain for a few days? You hosted a soccer dinner wow you are a rockstar😊

Dx 5/13/2015, IDC, Right, 2cm, Stage IV, metastasized to bone, ER+/PR+, HER2- Hormonal Therapy Faslodex (fulvestrant), Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Sep 23, 2017 07:40AM - edited Sep 23, 2017 07:41AM by westerville81

that sounds great. Just diagnosed BC Her2 stage IV mets to liver

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Sep 23, 2017 08:52AM marylark wrote:

Z I'm so glad the doc helped you get what needed to be done. It is such a gift when after so many docs ignore or say "we can't do that" you encounter someone who says "let's go for it". I'm anxious to hear your plan and am cheering you on.

Mary

Dx 5/1/2015, IDC, Right, 5cm, Stage IIIA, Grade 3, ER+/PR+, HER2- Chemotherapy 5/12/2015 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 23, 2017 08:53AM Grannax2 wrote:

Z you are my example of tenacity. Love the way your brain works. Radiologists are very knowledgeable and want to be helpful but your friend went the extra mile for you. Going straight to the source to get things done is brilliant. Of course, the MOS don't like it at all.

They must not have put you out to do BX. They had to intubate me for mine because my sats were too low. Nope I would not have been able to host a dinner.

You go girl, fly to Japan and keep us posted. Who knows, one of us could be next to need this TX. You'll give us detailed, personal information, because that's what you do for us. Thanks is not enough, Vicki.


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Sep 23, 2017 09:01AM kaayborg wrote:

Wow Z. That's beyond fabulous. A tiring day for sure but worth it. Take it easy now.

Dx 6/24/2014, IDC, Left, 1cm, Stage IA, Grade 3, 0/3 nodes, ER-/PR-, HER2- Surgery 7/16/2014 Lumpectomy: Left Chemotherapy 8/20/2014 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 8/3/2015 Carboplatin (Paraplatin), Gemzar (gemcitabine) Chemotherapy 6/20/2016 Carboplatin (Paraplatin) Chemotherapy 9/12/2017 Xeloda (capecitabine) Chemotherapy 9/25/2017 Halaven (eribulin) Targeted Therapy 11/13/2017 Chemotherapy 2/5/2018 Gemzar (gemcitabine)
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Sep 23, 2017 09:05AM hartrish wrote:

Zarovka, you are my warrior princess. I am so glad that you are so aggressive with taking action on your behalf. Being your our advocate is so important. I am so glad that you met an angel today that made things possible, what a wonderful radiologist who helped move the process forward. Lifting you up!!

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 9/7/2017 Carboplatin (Paraplatin), Gemzar (gemcitabine) Chemotherapy 9/10/2019 Xeloda (capecitabine)
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Sep 23, 2017 01:32PM Liwi wrote:

Z. I am sorry to hear about your progression but amazed by your research and preparation. How great the radiologist went all out for you to get your biopsy. You are so helpful to all in this group and it was particularly nice to hear about you getting such wonderful support from this doctor. It must have been quite a day ending with your soccer dinner.

I look forward to learning more about your immunotherapy in Japan and am wishing for great results for you.
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 4/19/2015 Arimidex (anastrozole) Radiation Therapy 5/6/2015 Dx 7/2017, ILC, Stage IV, metastasized to liver, ER+/PR+, HER2- Hormonal Therapy 8/9/2017 Faslodex (fulvestrant) Targeted Therapy 8/10/2017 Ibrance (palbociclib) Dx 8/1/2018, ILC, Stage IV, metastasized to other, ER+/PR-, HER2- Chemotherapy Doxil (liposomal doxorubicin)
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Sep 23, 2017 02:42PM - edited Sep 24, 2017 07:35AM by zarovka

Thanks all. I am going to the Tokyo for Autologous Immune Enhancement Therapy. It is sometimes referred to as natural killer cell therapy because that is one key and unchanging component of the procedure, but the type of AIET I will pursue has at least 15 components, each tunable to how your immune system and the cancer presents.

When I was researching the treatment in the spring of this year, the resident cancer microbiologist on Inspire, Fighterm, started a thread in response to questions I directed to her about this particularly treatment.

Early on in the Inspire thread I post about specifics of the treatment and a while later I follow up with some more details and references. You can find it all there along with comments and discussion. I'll keep posting over there becauseI know that fighterm will step in an correct any mis-statements I make if I post on that thread. I find immunotherapy terribly confusing.

The abscopal effect is when the immune system starts working against cancer. In the US we are (slowly) recognizing that the abscopal can be triggered by low dose radiation treatments like SBRT buy we don't know why. We treat it like a fortuitous but random event. AIET seeks to achieve the abscopal effect, deliberately. They treat cancer as a disease of the immune system and they treat the immune system, not the cancer.

I will document how this treatment goes and I am happy to share, but I will most likely put it together after it is over more like a single case study rather than a series of posts in a thread. In the meantime, you will get random complaints and observations while I travel in an extremely foreign land, dodging intercontinental missiles, with an 11 year old. Airfare to Japan was cheap and available on short notice. Thanks Kim Jong-un!

>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 23, 2017 03:26PM Kandy wrote:

Oh Z, I'm so sorry that you had progression too. Heartbreaking. You are definitely in my thoughts and prayers. I sure hope this treatment kicks those sneaky cells to the curb. Please be careful in your travels, that is really scary especially with A 11 yo with you. Thoughts and prayers are with you. God will carry you through this. Wishing you only the best.

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 2/2/2017 Abraxane (albumin-bound or nab-paclitaxel) Chemotherapy 5/8/2017 Carboplatin (Paraplatin) Chemotherapy 8/14/2017 Halaven (eribulin) Targeted Therapy
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Sep 23, 2017 07:30PM nkb wrote:

Z- as you probably already know- Japan is a really safe country. The subway map looks very daunting, but, is very logical and easy to use. We also could always find someone to guide us if we did not figure it out. it seems like 1/3 of the people in Tokyo are underground in the subway at any one time, there are whole cities under there. Good luck with the treatment-I so hope that it works and that you and DD enjoy your stay!

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 10/21/2012 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) Targeted Therapy 9/13/2022 Enhertu (fam-trastuzumab deruxtecan-nxki)

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