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 22, 2017 10:33AM lalady1 wrote:

Z - so sorry to hear about progression. You are a champion! Get that liver biopsy and let us know your plans for Japan. Maybe perfect timing that you were planning October. Faslodex is always in your back pocket and a relatively easy med (but you do get lumpy in your tush). I had 18 rounds on Ibrance +fas. I am rooting for you as always. Anything you need - we are here.

(()) Claire

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 22, 2017 10:43AM AnimalCrackers wrote:

Z - Argh!!!!! So sorry there was progression.  One thing I can say from my experience in changing treatments after progression - is that the next treatment can very well be more tolerable than Ibrance/Letrozole.  I know it may only be kicking the can down the road but if that road lasts another year or 2 before the next progression and you FEEL BETTER then that's nothing to sneeze at!  Even if you don't feel better but you get another year or 2 - that's nothing to sneeze at either.  But I prefer to hope for the former.  As you know I went on a clinical trial after Ibrance\Letrozole failed (progression to my liver).  I am very pleased with the clinical trial protocol.  I feel so much better on it.  My hair stopped falling out and I'm no where near as tired as I was.  There are still side affects but for me they have been extremely tolerable.  Whatever your next treatment ends up being - it may give you a new lease on life, so to speak.  It's always a punch in the gut when we face progression but there are lots of options out there and the next treatment isn't necessarily harsher.  It won't be a cure at this point but it will keep us around until there is one (we all hope).

For those of you who don't know - I am on a clinical trial for a new oral SERD that doesn't have a name yet.  It's just called LSZ102 and I take it with Kisqali (ribociclib).  LSZ102 is similar to Faslodex but it is oral - NO SHOTS.  I have a topic on it so check it out if you are interested.

Back to Z - we're here for you!  Excited to hear what happens in Japan!


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 1/4/2016 Femara (letrozole) Targeted Therapy 1/4/2016 Ibrance (palbociclib) Dx 4/2017, IDC, metastasized to liver, ER+/PR+, HER2- Hormonal Therapy 5/17/2017 Targeted Therapy 5/17/2017 Kisqali Hormonal Therapy 12/18/2017 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Targeted Therapy 12/18/2017 Radiation Therapy 8/19/2018 External: Bone Dx 8/20/2018, IDC, Stage IV, metastasized to bone Chemotherapy Taxol (paclitaxel) Surgery
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Sep 22, 2017 02:07PM Max_otto wrote:

Animal crackers,

I agree with you on the second line treatment can be easier than the first line, I was surprised by Faslodex being much more tolerable

I will lookup the trial.

Z,

Thinking of you ,

-k


Dx 4/2015, Right, Stage IV, ER+/PR+, HER2-
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Sep 22, 2017 03:40PM Openmind wrote:

Hi Z,

Wanted to chime in with my condolences regarding the progression, but my thumbs up for your plans with the Japanese NK cell immunotherapy protocol. Have you considered creating a thread for it? I know a lot of us will be very interested in following along. If I'm remembering correctly, I think you said it's normally done in conjunction with your standard of care treatments. With Ibrance/Letrozole out of the picture, will you be utilizing this therapy alone or adding something to it? Please know I admire your research skills, careful thought and planning and I wish you a phenomenal outcome.

In reading the recent postings, it seems like it's Letrozole/Ibrance fail-liver progression week. My SIL is a new member of that unpopular club as well. Her MO is setting up a liver biopsy and genomic testing with Tempus, but initially suggested Faslodex and Affinitor as the next step. I was interested to see you say Faslodex alone is a standard of care option, as I have very strong concerns about Affinitor for my SIL, who has had several bouts of pneumonia prior to her de novo MBC diagnosis. I suggested considering Faslodex alone until the biopsy genomic results are back, so I'm comforted to hear your MO would suggest that option too. I inquired about immunotherapy therapy trials, but her MO indicated that she felt they are not producing great results yet for ER+/PR+/HER2- breast cancers. I'm interested in any therapy option suggestions at this point. Thanks & best of luck to everyone in beating this awfulbeast.

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Sep 22, 2017 03:46PM kaayborg wrote:

Aw, Z...so sorry to read this. You were on such a roll but like others have said, no one is more prepared to find the next best treatment than you. Waiting to hear that all is well again. Much love and gratitude for you and your caring spirit.

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 22, 2017 04:29PM dolittle wrote:

Hi Mom,

The onc wants to put DD on navelbine, herceptin and perjeta but I am thinking a stronger chemo would be better.

I think the onc is trying for quality of life as DD had a tough time with the initial fec.

As first line treatment I want to like everyone else, kick these mets hard and don't want to waste time on a softer approach which may have no effect.

Has anyone else has success with navelbine as all I'm reading so far is not really positive?

Eliza

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Sep 22, 2017 06:06PM AnimalCrackers wrote:

Max Otto - I'm actually on my third line of treatment. I started with Tamoxifen, then Ibrance/letrozole and now LSZ102/Kisqali. We all respond so differently to these treatments so it is important to keep in mind that treatments that are hard on some are easier on others. Such a crap shoot!!

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 1/4/2016 Femara (letrozole) Targeted Therapy 1/4/2016 Ibrance (palbociclib) Dx 4/2017, IDC, metastasized to liver, ER+/PR+, HER2- Hormonal Therapy 5/17/2017 Targeted Therapy 5/17/2017 Kisqali Hormonal Therapy 12/18/2017 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Targeted Therapy 12/18/2017 Radiation Therapy 8/19/2018 External: Bone Dx 8/20/2018, IDC, Stage IV, metastasized to bone Chemotherapy Taxol (paclitaxel) Surgery
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Sep 22, 2017 08:18PM zarovka wrote:

Well. That was quite a day.

The scan report from my PET scan thursday was scary but also unclear. I happen to know that the radiologist at our local podunk hospital is bored out of his wits looking at fractures and thyroid nodules all day long. I went over this morning and walked in without an appointment and asked for help. He pulled up my scans and combed through the images with me beside him. It really boils down to one new met in a rib and 3 <2cm tumors in my liver that light up to 4-6 SUV.

There are no lymph nodes impinging on the vessels leading to my liver, gall bladder and adrenals as the reading radiologists postulated. There are 2-3 hepatic lesions that are hypermetabolic, really only 2. That is technically "multiple" mets but they could have clarified there were <=3 mets rather than say "multiple mets". It would have been nice to note that all are less than <2cm. The way that outfit reads and reports on PET scans did not adequately communicate the limits of the metastasis. And it is limited.

I also woke up this morning wanting a biopsy before I leave for Japan but unable to imagine the possibility that I could get a biopsy in one day. Nonetheless, after sitting with this wonderful radiologist for some time discussing my PET scan images, I asked if there was a universe in which I could get a biopsy today. He called his friend at the larger hospital in santa fe to get me in. He called my oncologists office and got through and got an order for me.

To be clear, my oncologist does not take my calls. I called her this morning three times trying to get the order and did not get a call back until 4:20 on my way home from the biopsy. This radiologist, who I know only because he once did an ultrasound of my thyroid nodule, spent two hours this morning making the calls to make biopsy happen. The only reason it happened is because he is a doctor with access to private phone lines. Unbelievable human being. Sometimes we run into angels ... happened to me today.

I am comforted greatly to have fresh tumor samples in paraffin somewhere in a lab but also exhausted. After the liver biopsy I still had to host a dinner for the JV Girls Soccer team. I kid you not. This was not supposed be a liver biopsy fire drill day, it was supposed to be soccer mom day. Ended up being both. Not an ordeal, family did their part, but also not exactly compliant with the post-op instructions. Time double down and comply.

Still trying to make sure I get the right information from the pathology study ... the first pathology report I got was incomplete. That is my project for the weekend. Any thoughts on the components of a complete pathology report are welcome.

>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 04:35AM PHOTOGIRL-62 wrote:

Z, you met an angel for sure. Sounds like something my husband would do for someone. It sounds like this Doc got the ball rolling for you. I'm so happy for you. Keep us posted on your progress and next TX. I'm thinking of you and hugs to you!

Anit

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 23, 2017 05:05AM babs6287 wrote:

Z. I had chills reading your post. That a doctor would do that for you is truly amazing! What an angel. Now that you've had the biopsy and the dinner is over please rest and be a compliant patient. Your body needs a rest.

Keep us posted on what's next for you

Hugs

Barbar

Dx 8/17/2012, IDC, 4cm, Stage IIIC, Grade 2, 16/26 nodes, ER+/PR+, HER2- Surgery 8/23/2012 Lymph node removal: Left, Sentinel, Underarm/Axillary; Mastectomy: Left Chemotherapy 9/20/2012 AC + T (Taxol) Radiation Therapy 1/20/2013 Breast, Lymph nodes Hormonal Therapy 3/21/2013 Aromasin (exemestane) Surgery 8/28/2013 Prophylactic mastectomy: Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Surgery 10/29/2013 Reconstruction (left) Surgery 1/27/2014 Reconstruction (left) Surgery 5/17/2014 Reconstruction (left) Surgery 10/16/2014 Reconstruction (left); Reconstruction (right) Dx 1/2015, IDC, Left, <1cm, Stage IV, metastasized to other, Grade 2, 16/26 nodes, ER+/PR+, HER2-, Hormonal Therapy 2/16/2015 Femara (letrozole) Targeted Therapy 3/13/2015 Ibrance (palbociclib) Dx 10/1/2015, IDC, Left, Stage IV, metastasized to bone/liver, Grade 2, 16/26 nodes, ER+/PR+, HER2- Targeted Therapy 10/23/2015 Chemotherapy 12/31/2015 Xeloda (capecitabine) Chemotherapy 10/5/2016 CMF Chemotherapy 12/9/2016 Taxol (paclitaxel) Chemotherapy 4/26/2017 Gemzar (gemcitabine) Chemotherapy 6/21/2017 Halaven (eribulin) Targeted Therapy 8/9/2017 Chemotherapy 11/29/2017 Halaven (eribulin) Chemotherapy 12/13/2017 Doxil (doxorubicin) Chemotherapy 7/25/2018 Halaven (eribulin)

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