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Topic: Anyone 5+ years with liver mets and ER+ Her2-?

Forum: Stage IV/Metastatic Breast Cancer ONLY —

A place for those managing the ups & downs of a Stage IV/metastatic breast cancer diagnosis. Please respect that this forum is for Stage IV members only. There is a separate forum For Family and Caregivers of People with a STAGE IV Diagnosis.

Posted on: Apr 25, 2018 01:05AM - edited Sep 21, 2019 12:17PM by ShetlandPony

ShetlandPony wrote:

I just have to ask. If you had liver mets at diagnosis of mbc, and you are ER positive and Her2 negative, and have reached five years already, please raise your hand. Most of the 5+ years women I see here on BCO are either Her2+ (the Her2 drugs are quite successful), or they started with, and may still have, only bone mets. If I can hear from even one patient like me, it will be encouraging. I am coming up on four years now. It looks like I'm NEAD for the second time, so I am hopeful. But I would like to be able to say to myself, "If she can get there, so can I."

Edited to update: I've now survived five years and am working on six.

2011 Stage I ILC 1.5cm grade1 ITCs sn Lumpectomy,radiation,tamoxifen. 2014 Stage IV ILC mets breast,liver. TaxolNEAD. Ibrance+letrozole 2yrs. Fas+afinitor nope. XelodaNEAD 2yrs. Eribulin,Doxil nope. SUMMIT FaslodexHerceptinNeratinib for Her2mut NEAD
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Sep 20, 2019 09:20AM kareng1227 wrote:

Nicole, That's a good question. In 2012, before it mets in liver, it was a grade 2. He did not discuss what it is now and have not received my copy of the pathology report yet. We are still waiting on some further genetic testing. The onco type was done in 2012 and yes, onco type of 7 is low. My doctor in 2012 decided, because it was so low, that chemo was not necessary. So I did lumpectomy and radiation and tamoxifen/examastane. So in August, I went for my one year follow up my ca-15/tumor marker had elevated. We were surprised. Have you had any side effects on your medications?

Dx 10/19/2012, IDC, 2cm, Stage I, ER+/PR+, HER2- Radiation Therapy 12/18/2012 Breast, Lymph nodes Hormonal Therapy 2/1/2013 Dx 9/2019, Right, Stage IV, metastasized to liver, ER+/PR+, HER2- Targeted Therapy 9/9/2019 Ibrance (palbociclib) Surgery Lumpectomy: Right; Lymph node removal: Right Hormonal Therapy Faslodex (fulvestrant)
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Sep 20, 2019 09:52AM NicoleRod wrote:

Well..you should be glad you are a Grade 2 I am sure that hasn't changed. I am a Grade 3. :( The ONLY good thing (if we can call it that) about Grade 3 (from what I am told) is that it responds well to chemo. I too never had any chemo with my first breast cancer it was a Stage 0 in 2014. I only had Lumpectomy and Radiation. I refused the Tamoxifen because really they said the stats were the same for the people at stage 0 that took it and did not take it . Any way here I am now. As far as side effects the Letrozole gives the most...lots of hot flashes of course. The Ibrance kept lowering my Neutophil count so after the 1st month on the highest dose of 125 we reduced down to 100mg I stayed on that for 2 more months but then I got these 2 mouth sores...OMGOSH they were horrible....1 canker sore and 1 fever sore that turned into a canker sore...I had to go off the Ibrance for 14 days until they went away. So now they dose reduced me again to 75 mg. I just started that last Friday. I am on my 4th month of Ibrance. So besides the mouth sores and low blood count I would say I have had and still do off and on eye twitches, fatigue and most of all sore joints but I think that is from the Letrozole.

It's minimal and I am grateful, compared to what some experience with chemo. I am going to PM you.






Dx 12/14 Stage 0, Grade 3, ER+/PR, HER2- (FISH),Dx 04/19, Stage IV mets to bone/liver, Hormonal Therapy 04/19 - 10/19 Ibrance/let/faslodex 10/19 Cryoblation on 2 of 4 tumors in liver. Dec 2019-May 2020 Xeloda Failed May-July 2020 - Doxil Failed Dx 12/19/2014, DCIS, Right, Stage 0, Grade 3, ER+/PR+, HER2- (FISH) Dx 2/5/2019, IDC, Right, Stage IIA, Grade 3, ER+/PR-, HER2- Dx 3/2019, Stage IV, metastasized to bone/liver, Grade 3, ER+/PR-, HER2- Hormonal Therapy 4/28/2019 Surgery Chemotherapy Doxil (doxorubicin) Chemotherapy Xeloda (capecitabine) Radiation Therapy Surgery Mastectomy: Left, Right
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Sep 21, 2019 06:00AM - edited Sep 21, 2019 06:02AM by NicoleRod

Schnauzermom and Sandi beach.....what grade are your cancers? It looks like the Grade 1 and Grade 2 have the most positive longer NEDs...?

Dx 12/14 Stage 0, Grade 3, ER+/PR, HER2- (FISH),Dx 04/19, Stage IV mets to bone/liver, Hormonal Therapy 04/19 - 10/19 Ibrance/let/faslodex 10/19 Cryoblation on 2 of 4 tumors in liver. Dec 2019-May 2020 Xeloda Failed May-July 2020 - Doxil Failed Dx 12/19/2014, DCIS, Right, Stage 0, Grade 3, ER+/PR+, HER2- (FISH) Dx 2/5/2019, IDC, Right, Stage IIA, Grade 3, ER+/PR-, HER2- Dx 3/2019, Stage IV, metastasized to bone/liver, Grade 3, ER+/PR-, HER2- Hormonal Therapy 4/28/2019 Surgery Chemotherapy Doxil (doxorubicin) Chemotherapy Xeloda (capecitabine) Radiation Therapy Surgery Mastectomy: Left, Right
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Sep 21, 2019 06:27AM - edited Sep 21, 2019 08:52AM by SandiBeach57

NicoleRod. I do not have data from my liver bx that indicates the grade, Ki67, luminal, etc. I believe since I was in an emergent situation, that the hormonal data was from the FNA (fine needle aspirate). I do have bx material, just saved at this time. No Foundation1 was sent as my MO wanted to wait to see how I responded to Tx. When I progress, a fresh bx will be sent. I did have blood drawn for genetic mutations..none found at that time.

The DCIS in 2006 and 2007 were both high grade, comedonecrosis, sentinel node negative, ER+PR+ with close margins. My MO suspected there were some IDC cells out there, but couldn't find them and you just can't put someone on chemo without proof! 10 years later..well, here I am.

I do not know why I am still responding. At the start of 3rd year of mets dx, my MO is now alternating CT/bone scan with MRI abdominal scan every 3 months. I still have monthly labs with Ca15.3.

Just a final note. I am protective of my liver. I carefully research any supplement that might put unnecessary burden on my liver. My MO knows and advises me if she has concerns. I had widespread mets.

No regeneration will occur where the lesions were as there is no parenchyma to help regrowth. This is what my MO told me. If the remaining tumors did not respond with tx, she would have considered some form of ablation. But that came with a warning that she had seen tumors grow back in those treated lesions. Thankfully, my liver responded..it took about one year.

Ask me any questions..always want to help a fellow metser.

Also, I will attach the liver mets link. Others might like to reply to your question.

https://community.breastcancer.org/forum/8/topics/...


Wear your jewelry! See my biography section for diagnosis and treatments.
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Sep 21, 2019 07:44AM Anewbreath wrote:

sandiBeach- please let me know if I should PM these kind of questions or two many questions!! I’m so happy you are NEAD and doing so well on treatments. What a inspiration to read😊. I’m wondering about your monthly Ca.15 tests. Does your MO feel like it’s accurate? Is it in the normal range each month? Does it reflect your scan results? My MO gets mine each month and mine has reached the normal range after a year of treatment. Now I hold my breath each month for the results and this month he hasn’t released them yet😬. I had a scan before I started I/L and finished carbo/taxol that showed reduction in all tumors then moved me to I/L. MO said scan on TM or Symptoms or if I request he will order. I’m PR-95%,ER5%Her2-. Thank you for sharing 💞

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Sep 21, 2019 08:33AM SchnauzerMom wrote:

NicoleRod, sorry that I don't my cancer grade. Good question. Probably I should try to find out.

mets to liver, bones Dx 11/21/1987, ILC, <1cm, Stage I, ER+/PR+, HER2- Dx 12/11/1989, ILC, Stage IIIA, mets, ER+/PR+, HER2- Chemotherapy 1/9/1990 CMF Hormonal Therapy 7/30/2012 Faslodex (fulvestrant) Hormonal Therapy 7/30/2012 Femara (letrozole) Dx 7/31/2012, ILC, Stage IV, mets, ER+/PR+ Targeted Therapy 1/14/2013 Avastin (bevacizumab) Chemotherapy 1/14/2013 Taxol (paclitaxel) Chemotherapy 11/9/2013 Abraxane (albumin-bound or nab-paclitaxel) Chemotherapy 4/1/2014 Navelbine (vinorelbine) Hormonal Therapy 7/21/2014 Aromasin (exemestane) Targeted Therapy 7/22/2014 Afinitor (everolimus) Chemotherapy 11/11/2014 Doxil (doxorubicin) Chemotherapy 7/12/2016 Xeloda (capecitabine) Chemotherapy 12/2/2016 Halaven (eribulin) Hormonal Therapy 5/31/2017 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Targeted Therapy 7/17/2018 Verzenio
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Sep 21, 2019 08:44AM - edited Sep 21, 2019 08:48AM by SandiBeach57

Hi Newbreath, I don't mind answering your questions..it could help others. Shetland might be pondering why this discussion is on this topic! But if she forgives me, I will certainly tell you about how my MO addresses my CA 15.3. Meanwhile, I will find the appropriate thread to continue any discussions on tumor markers. If I find it, I will edit my response to include the link.

My Ca15:3 is ordered only to MONITOR THE TREND of the tumor marker for breast cancer. So based on that, I have never run in the normal range and my MO would never change course of tx based on a Ca15:3.results. If there is a dramatic increase, we are to repeat for several months, then if a trend upwards is recognized, then a scan will be ordered. With saying that, some folks the Ca15:3 is NOT reliable source of info for their cancers. Sometimes I have a slight increase due to inflammation.

https://community.breastcancer.org/forum/106/topic...


Wear your jewelry! See my biography section for diagnosis and treatments.
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Sep 21, 2019 09:21AM - edited Sep 21, 2019 09:24AM by JFL

I would like to share my experience with liver regeneration, as my experience was different than what SandiBeach's doctor mentioned. In 2016, after I failed my first line (Ibrance, Aromasin and Faslodex), my liver had an explosion in 3 months' time to where my liver was 70% mets and virtually the entire left lobe was mets with no healthy liver tissue. After I started Xeloda, the lesions shrunk, and continued to shrink over a year's time. At best since then, my liver has been 10% mets (but all inactive). At worst, 30%, despite failing numerous treatments since then, each time in my liver. My liver regenerated the areas that were previously mets. In live liver transplants, a portion of the healthy donor's liver is removed with the idea that it will grow back significantly.

Chart your own course. Dx at 30. Dx with mets at 38 while pregnant - extensive liver & bone involvement. Currently on Gemzar, XGeva & COC Protocol. ER+/PR+, HER2 equivocal (IHC +2/FISH negative). Y90 liver radioembolization in 2018. Dx 9/2006, IDC, Right, 1cm, Stage IIB, Grade 3, 1/16 nodes, ER+/PR+, HER2- (FISH) Surgery 9/23/2006 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)
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Sep 21, 2019 11:11AM Anewbreath wrote:

sandibeach5, I’ll reply to you on the tumor marker thread. Thank you for adding the link. Sometimes the discussion can hit on multiple threads. I don’t have a lot of experience with communication on the boards and when I read your post about “ask me questions”. I just didn’t even hesitate. Sorry, i’ll Be more alert to what thread I’m on.

JFL, truly fascinating how robust our liver is. That makes me really admire the work it does! I was devastated after 10 years of thinking I was cured to a liver full with widespread mets. This regrowth really gives hope! Your excellent explanation makes feel like it’s possible for ourtreatments to kill or put to sleep our cancer cells and regrow healthy non malignant tissue?

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Sep 21, 2019 11:48AM Kattysmith wrote:

JFL, I'm hoping for an appointment with a new oncologist soon and plan to ask her about Xeloda, so your post gives me encouragement!

First diagnosed borderline Stage 2 IDC, left breast in 2003. No problems until a surprise (!) Stage IV recurrence in 2015! In addition to treatments listed below, I started monthly injections of Xgeva for bone support in July 2016. Dx 10/23/2015, Left, Stage IV, metastasized to other, Grade 3, 0/3 nodes, ER+, HER2- Chemotherapy 11/4/2015 AC Hormonal Therapy 2/5/2016 Femara (letrozole) Targeted Therapy 2/5/2016 Ibrance (palbociclib) Immunotherapy 12/23/2018 Hormonal Therapy Faslodex (fulvestrant)
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Sep 21, 2019 12:14PM ShetlandPony wrote:

Lol, SandiBeach. Thanks for keeping up with this thread! To our new sisters, I do recommend the thread Sandi linked called “How are people with liver mets doing?” It’s kind of liver mets central, where we discuss treatment, scans, tests, and just the whole liver mets experience in general. Lots of people there, so there is usually someone who can address any question or direct you to a thread with a detailed discussion of it.

A note about NED/NEAD. There is someone here on BCO who has survived quite a along time, and she has never been NED/NEAD. I wish I could remember more right now, but I can’t. We all want NEAD, but it is possible to do well without it.

2011 Stage I ILC 1.5cm grade1 ITCs sn Lumpectomy,radiation,tamoxifen. 2014 Stage IV ILC mets breast,liver. TaxolNEAD. Ibrance+letrozole 2yrs. Fas+afinitor nope. XelodaNEAD 2yrs. Eribulin,Doxil nope. SUMMIT FaslodexHerceptinNeratinib for Her2mut NEAD
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Sep 21, 2019 09:34PM JFL wrote:

Shetland, I think it is Janice (enjoyeverysandwich). She must be going on 9 years or so now.

For newbies with liver mets who have not yet discovered it, I also recommend the liver mets thread that Sandibeach and Shetland mentioned. It is a great thread and I have learned so much there and received so much support..

Chart your own course. Dx at 30. Dx with mets at 38 while pregnant - extensive liver & bone involvement. Currently on Gemzar, XGeva & COC Protocol. ER+/PR+, HER2 equivocal (IHC +2/FISH negative). Y90 liver radioembolization in 2018. Dx 9/2006, IDC, Right, 1cm, Stage IIB, Grade 3, 1/16 nodes, ER+/PR+, HER2- (FISH) Surgery 9/23/2006 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)
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Jun 12, 2020 11:48AM SandiBeach57 wrote:

Bump.

Just interested to see if there is anyone out there who has liver mets, ER+ and HER2- and still have good quality of life at 5+ years..

Wear your jewelry! See my biography section for diagnosis and treatments.
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Jun 12, 2020 12:58PM NicoleRod wrote:

:(


Dx 12/14 Stage 0, Grade 3, ER+/PR, HER2- (FISH),Dx 04/19, Stage IV mets to bone/liver, Hormonal Therapy 04/19 - 10/19 Ibrance/let/faslodex 10/19 Cryoblation on 2 of 4 tumors in liver. Dec 2019-May 2020 Xeloda Failed May-July 2020 - Doxil Failed Dx 12/19/2014, DCIS, Right, Stage 0, Grade 3, ER+/PR+, HER2- (FISH) Dx 2/5/2019, IDC, Right, Stage IIA, Grade 3, ER+/PR-, HER2- Dx 3/2019, Stage IV, metastasized to bone/liver, Grade 3, ER+/PR-, HER2- Hormonal Therapy 4/28/2019 Surgery Chemotherapy Doxil (doxorubicin) Chemotherapy Xeloda (capecitabine) Radiation Therapy Surgery Mastectomy: Left, Right
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Jun 12, 2020 01:58PM SandiBeach57 wrote:

Agree NR.

Wear your jewelry! See my biography section for diagnosis and treatments.
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Jul 31, 2020 05:40PM SchnauzerMom wrote:

Hello,

Posting an update here. Today is 8 years since I was diagnosed with liver mets! I am very grateful. Still doing pretty well. Some meds have not worked, but I've been on Verzenio for two years now, and it's been effective thus far. Never been NED, and there have been some hard times, but,on the whole, a pretty good quality of life. I do hope the checkered history of this very ordinary person can give hope. Wishing you all well !

mets to liver, bones Dx 11/21/1987, ILC, <1cm, Stage I, ER+/PR+, HER2- Dx 12/11/1989, ILC, Stage IIIA, mets, ER+/PR+, HER2- Chemotherapy 1/9/1990 CMF Hormonal Therapy 7/30/2012 Faslodex (fulvestrant) Hormonal Therapy 7/30/2012 Femara (letrozole) Dx 7/31/2012, ILC, Stage IV, mets, ER+/PR+ Targeted Therapy 1/14/2013 Avastin (bevacizumab) Chemotherapy 1/14/2013 Taxol (paclitaxel) Chemotherapy 11/9/2013 Abraxane (albumin-bound or nab-paclitaxel) Chemotherapy 4/1/2014 Navelbine (vinorelbine) Hormonal Therapy 7/21/2014 Aromasin (exemestane) Targeted Therapy 7/22/2014 Afinitor (everolimus) Chemotherapy 11/11/2014 Doxil (doxorubicin) Chemotherapy 7/12/2016 Xeloda (capecitabine) Chemotherapy 12/2/2016 Halaven (eribulin) Hormonal Therapy 5/31/2017 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Targeted Therapy 7/17/2018 Verzenio
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Aug 1, 2020 05:28AM SandiBeach57 wrote:

I forgot about this topic. Thank you for posting your good news here!! Shetland started this thread.

May I ask you if you ever had genomic testing, like F1? If so, what was found? I see you are ILC. What scans worked the best for you?

I am so happy you posted, mainly to know you are doing well in our cancer met world.

Wear your jewelry! See my biography section for diagnosis and treatments.
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Aug 1, 2020 08:21AM JFL wrote:

SchnauzerMom, congratulations on teaching the 8-year mark. Your experience certainly gives others hope

Chart your own course. Dx at 30. Dx with mets at 38 while pregnant - extensive liver & bone involvement. Currently on Gemzar, XGeva & COC Protocol. ER+/PR+, HER2 equivocal (IHC +2/FISH negative). Y90 liver radioembolization in 2018. Dx 9/2006, IDC, Right, 1cm, Stage IIB, Grade 3, 1/16 nodes, ER+/PR+, HER2- (FISH) Surgery 9/23/2006 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)
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Aug 1, 2020 11:57AM AlabamaDee wrote:

SchnauzerMom you give us hope even though our roads through cancer may be different. Thanks for posting!

De

Primary neuroendocrine breast cancer Dx 5/23/2013, Right, 1cm, Stage IIB, Grade 2, 1/22 nodes, ER+/PR+, HER2- (FISH) Chemotherapy 7/28/2013 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Dx 4/2019, Stage IV, metastasized to liver, ER+/PR+, HER2- Chemotherapy Doxil (doxorubicin) Targeted Therapy Afinitor (everolimus) Hormonal Therapy Faslodex (fulvestrant) Hormonal Therapy Arimidex (anastrozole), Aromasin (exemestane), Fareston (toremifene), Femara (letrozole) Hormonal Therapy Faslodex (fulvestrant) Targeted Therapy Verzenio Chemotherapy Xeloda (capecitabine)
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Aug 2, 2020 12:39PM NicoleRod wrote:

SchnauzerMom WOW just WOW !!!!

Dx 12/14 Stage 0, Grade 3, ER+/PR, HER2- (FISH),Dx 04/19, Stage IV mets to bone/liver, Hormonal Therapy 04/19 - 10/19 Ibrance/let/faslodex 10/19 Cryoblation on 2 of 4 tumors in liver. Dec 2019-May 2020 Xeloda Failed May-July 2020 - Doxil Failed Dx 12/19/2014, DCIS, Right, Stage 0, Grade 3, ER+/PR+, HER2- (FISH) Dx 2/5/2019, IDC, Right, Stage IIA, Grade 3, ER+/PR-, HER2- Dx 3/2019, Stage IV, metastasized to bone/liver, Grade 3, ER+/PR-, HER2- Hormonal Therapy 4/28/2019 Surgery Chemotherapy Doxil (doxorubicin) Chemotherapy Xeloda (capecitabine) Radiation Therapy Surgery Mastectomy: Left, Right

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