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 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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Oct 25, 2017 08:23AM j1e1n1a wrote:

Hello. This is my first time posting here and I would like to thank you all for sharing your knowledge and beautiful pictures. ;)

Until this last month my Mets were all in the bone. I had a PET in Sept 2017 that confirmed it has moved to my liver and adrenal gland.

I was initially diagnosed with primary er+ pr+ Her- the hormonals seemed to have worked for almost 5 years.... Alas the pathology on liver biopsy has changed to triple negative...so bye bye hormonals.

This tnbc is a bit scary. In the last 3 weeks I have heard different names of possible chemos for me and was even considered for a trial. At times it feels like decisions are made to the flip of a coin and that really freek me out.

I was denied participation for the trial 2 days ago due to not having enough slides from my primary tumor. This you can imagine was bit frustrating. I'm not even sure why this was needed as the trial was for tnbc and my primary tumor was er+pr+....

Anyway I start Halavan (Eribulin) on Friday...hope it knocks the socks off those little buggers.

Wishing you all well with you current treatments and sending you all my love. Sorry this was so long.

Jena

Jena -mother of 2, daughter age 16 and son age 15 Dx 12/7/2012, IDC, 4cm, Stage IV, Grade 3, mets, ER+/PR+, HER2- Hormonal Therapy 1/15/2013 Arimidex (anastrozole) Chemotherapy 1/15/2013 Adriamycin (doxorubicin), Cytoxan (cyclophosphamide), Taxotere (docetaxel) Radiation Therapy 1/15/2013 Bone Hormonal Therapy 6/30/2014 Aromasin (exemestane) Targeted Therapy 7/24/2015 Afinitor (everolimus) Hormonal Therapy 1/4/2017 Faslodex (fulvestrant) Targeted Therapy 1/4/2017 Ibrance (palbociclib) Dx 9/27/2017, Stage IV, metastasized to liver/other, ER-/PR-, HER2-, Chemotherapy 10/26/2017 Halaven (eribulin)
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Oct 25, 2017 09:20AM Grannax2 wrote:

j1e1n1a. I see you live in Oklahoma, I'm from Oklahoma and have lots of family there. just curious where you get your treatment. I'm in Dallas area now, and have been for over 38 years.

I cannot imagine how frustrating that would be. Progression is scary to think of but if it changed/ mutated to a completely different cancer, I would freak out!

Hope you do well on new TX.

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Oct 25, 2017 10:54AM Wendy3 wrote:

Anita beautiful as always, you must be so excited for Africa . My sister moved there in September she is not so happy though u fortunately her husband works for a mining company so she is in one of those compounds. I wish she would have gone to your part of Africa now all I do is worry.

Momallthetime yippee friggin yeah so happ to hear some good news for Dani. I hope she finds this treatment works for her crossing all appendages.

Jena I hope I can call you that all the ones aren't so fun to type lol. Welcome to the group sorry you're here but you will find some great info for sure.


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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Oct 25, 2017 12:17PM - edited Oct 26, 2017 03:44AM by zarovka

NO1-2NV. I notice you are in NM too. We will generally have to go out of state but neither my doctors at St Vincent's or UNM ever explored out of state trials. You need a trial matching service that looks nationally.

After the first visit, NIH in Maryland will pay your travel and they are one of two or three places with the best immunotherapy trials.

There are several trial matching services. I just learned about emerging med … they are free and match you nationally. https://app.emergingmed.com/emed/home

The cancer research institute matches you nationally to immunotherapy trials.

https://www.cancerresearch.org/patients/clinical-t...

The other way to go is to go for a second opinion at an institute known for their trials like UCSF or MSKCC. MD Anderson is an option, but I had trouble getting through the gate there the one time I pulled that string.

Grannax - Monday was windy but otherwise pleasant and sunny. The super typhoon past in the early morning as I slept and I mostly missed it, which was a bummer. Another typhoon on it's way this weekend as I leave. I learned this week there have been 4 since we were here. Inland its just heavy rain with some wind.

It's Thursday here now and I had my second to last treatment yesterday. Just NKC infusion. Got to the Imperial Palace before the infusion and then headed off to Hakone for Mt Fuji fix. Got to Hakone late last night. Looking forward to a nice day tomorrow… we may actually see the mountain which I understand is not a given.

Anita - I love antelope canyon. Went there last year.

Mom - I appreciate the full report. Extremely worried but hopeful.

Hi Artist. I will take a typhoon over 4 hours in a clinic and 4 procedures, which is what the last day of treatment looks like Friday. It's hard to believe I can do this given where I started with my medical phobia. Amazing what we deal with. All minor IV's and shots but I could do without it entirely for sure.

Welcome Kaption. We're a friendly and upbeat bunch much like yourself.

Lalady - It astonishes me that we don't get a bye on the usual illnesses like the flu … it really does. Feel better and go knock of another chemo treatment. I lost significant weight on two low dose cancer IV's. I am not complaining.

Jena - welcome. Hope Halavan is easy and effective. Most treatment decisions have an element of throwing darts at the board. If you want more precision, consider Rational Therapeutics and Dr. Nagorny. He requires a chunk of tumor the size of the end of your pinky, which is not always available safely.

He tries a bunch of chemo on the actual tumor. Standard chemo-sensitivity training tries to grow your cells from a small sample to get enough for testing This doesn't work. Only 40% of the cancer cells grow in a dish so you miss most of them when you try to grow enough tissue to test with. Gotta getta chunk.

Getting a regular biopsy and genetic testing is another way to refine your options as they have some sense of which drugs respond to which mutations. I have long list of issues with this approach and a long rant at the ready to launch on anyone who gets too peppy about the promise of precision medicine. However, I had genetic testing done myself. I actually got actionable information from the report I am using the information to guide treatment.

Even with all this you will still be flipping coins to some extent.

>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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Oct 25, 2017 02:53PM ShetlandPony wrote:

Oy, I'm three pages behind again.

Momall, that's good news that you found such a helpful doctor and that Dani can get Y90. That should really help her gain time and put her in a better position to deal with drug treatments afterward.

Kaption, you dealt with that brain met; you can deal with the liver mets too. Go Abraxane, and get Kaption to stable or NEAD everywhere!

Lalady, flu, just what you needed, eh? (Not.) It's good you are able to go in today. If necessary I will distract your sister while you steal the pants. Be sure and get some good ones.

Jena, welcome. Earlier this year my onc and I determined that the cancer was no longer responding to the anti-estrogen therapies, so I moved to Xeloda. Mentally that was hard, but physically it hasn't been any worse for me. I asked some medical professionals at a conference if my diagnosis was tnbc now, and they gave me to understand that no, it is endocrine therapy-resistant ER+. That makes sense because the underlying biology is very different from tnbc, even at this point with it having evolved. I don't think my recent liquid biopsy showed typical tnbc mutations. Do your docs say that your liver tumors are tnbc, as in basal type rather than luminal A or B? Have you had any tumor genomic tests done? I'd like to understand this better.

Zarovka, we have all been on an amazing trip to Japan with you. Thank you so much for sharing. What a strange combination of sightseeing and cancer treatment. I hope Fuji-san is inspirational and powerful for you.

2011 Stage I ITCs sn, premenopausal, Oncotype 16. 2014 Stage IV mets breast,liver. TaxolNEAD. Ibrance+letrozole 2yrs. Fas+afinitor nope. XelodaNEAD 2yrs. Eribulin,Doxil nope. SUMMIT FaslodexHerceptinNeratinib for Her2mut NEAD 1 1/2yrs. GI/perit mets Dx 2011, ILC, 1cm, Stage IA, Grade 1, 0/1 nodes, ER+/PR+, HER2- Dx 2014, ILC, 2cm, Stage IV, metastasized to liver/other, Grade 2, ER+/PR+, HER2- Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Radiation Therapy Whole breast: Breast Surgery Lumpectomy
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Oct 25, 2017 03:30PM ShetlandPony wrote:

JFL, we think alike. That heating pad might help, and at least it is unlikely to hurt.

Artist, I am so sorry you are having muscle trouble. I want you to be able to do your art and go about your day cane-free. Might you be off abraxane soon? Then hopefully healing will take place. (It's on your chart to never ever give you Cipro again, I hope.) Glad you were there for your beautiful daughter's wedding -- she looks like you-- though sorry it had to be during this chemo.

How interesting about the skin sensitivity and liver mets. About a year ago -- hmm, when progression was starting up -- I started getting a rash on my face from a mild sunscreen that I had been using without a problem. I switched to a zinc oxide one with a tint.

Z, thanks for the idea of employing a PDL-1 inhibitor at the time of Y90. I have added that to my notes.

Whoa, Linda, CEF. May it be easy on you and tough on cancer.

2011 Stage I ITCs sn, premenopausal, Oncotype 16. 2014 Stage IV mets breast,liver. TaxolNEAD. Ibrance+letrozole 2yrs. Fas+afinitor nope. XelodaNEAD 2yrs. Eribulin,Doxil nope. SUMMIT FaslodexHerceptinNeratinib for Her2mut NEAD 1 1/2yrs. GI/perit mets Dx 2011, ILC, 1cm, Stage IA, Grade 1, 0/1 nodes, ER+/PR+, HER2- Dx 2014, ILC, 2cm, Stage IV, metastasized to liver/other, Grade 2, ER+/PR+, HER2- Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Radiation Therapy Whole breast: Breast Surgery Lumpectomy
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Oct 25, 2017 03:48PM ShetlandPony wrote:

My recent TMs were very low normal, so I am staying with Xeloda and making hay while the sun shines. Thank you for telling me that retrocath had reflux and bloating from Xeloda, Artist. The gyn onc said that if I had something going on in my ovaries enough to cause these symptoms, we would see it on my scans. And if in lower GI, we would see ascites. It might not show on my scans if upper GI had cancer, but since the symptoms have lessened somewhat and my reliable TMs are so low, my onc and I decided I would not see the gastro onc. We think it could just be the Xeloda. It seemed better on my week off last cycle. I seem to be prone to reflux and have had it more or less for years.

2011 Stage I ITCs sn, premenopausal, Oncotype 16. 2014 Stage IV mets breast,liver. TaxolNEAD. Ibrance+letrozole 2yrs. Fas+afinitor nope. XelodaNEAD 2yrs. Eribulin,Doxil nope. SUMMIT FaslodexHerceptinNeratinib for Her2mut NEAD 1 1/2yrs. GI/perit mets Dx 2011, ILC, 1cm, Stage IA, Grade 1, 0/1 nodes, ER+/PR+, HER2- Dx 2014, ILC, 2cm, Stage IV, metastasized to liver/other, Grade 2, ER+/PR+, HER2- Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Radiation Therapy Whole breast: Breast Surgery Lumpectomy
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Oct 25, 2017 04:37PM leftfootforward wrote:

Shetland/ Xeloda is notaorious for causibgvreflux. I had to get a prescription to help with mine. Once I was on one I had no problems. Something to look into.

Dx 12/13/2010, IDC, 3cm, Stage IIIA, Grade 2, 1/16 nodes, ER-/PR-, HER2- Dx 12/4/2012, IDC, Stage IV, 0/0 nodes, ER-/PR-, HER2-
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Oct 25, 2017 06:17PM ShetlandPony wrote:

Thanks for that info, leftfootforward.

2011 Stage I ITCs sn, premenopausal, Oncotype 16. 2014 Stage IV mets breast,liver. TaxolNEAD. Ibrance+letrozole 2yrs. Fas+afinitor nope. XelodaNEAD 2yrs. Eribulin,Doxil nope. SUMMIT FaslodexHerceptinNeratinib for Her2mut NEAD 1 1/2yrs. GI/perit mets Dx 2011, ILC, 1cm, Stage IA, Grade 1, 0/1 nodes, ER+/PR+, HER2- Dx 2014, ILC, 2cm, Stage IV, metastasized to liver/other, Grade 2, ER+/PR+, HER2- Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Radiation Therapy Whole breast: Breast Surgery Lumpectomy
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Oct 26, 2017 12:02AM Liwi wrote:

Wonderful pictures Anita, thanks for sharing.

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 4/1/2015 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 (doxorubicin)

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