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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 4 or Mets.

Posted on: Aug 16, 2013 07:02PM

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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Jul 16, 2021 12:40PM moth wrote:

lff, just a bit before bc I had 1/2 my thyroid resected for the same reason- those damned hurtle cells. Sorry you're having to go through this again. Hope your mo has good advice.

I take weekends off

Initial dx at 50. Seriously?? “Sometimes the future changes quickly and completely and we’re left with only the choice of what to do next." blog: Never Tell Me the Odds

Dx 12/2017, IDC, Left, 1cm, Stage IA, Grade 3, 0/5 nodes, ER-/PR-, HER2- (IHC) Surgery 12/12/2017 Lumpectomy: Left; Lymph node removal: Sentinel Chemotherapy 2/14/2018 AC + T (Taxol) Radiation Therapy 8/13/2018 Whole-breast: Breast Dx 2/2020, IDC, Stage IV, metastasized to liver/lungs, Grade 3, ER-/PR-, HER2- Chemotherapy 3/18/2020 Taxol (paclitaxel) Immunotherapy 3/19/2020 Tecentriq (atezolizumab) Chemotherapy 11/26/2020 Abraxane (albumin-bound or nab-paclitaxel) Dx 12/9/2020, IDC, Right, Stage IV, metastasized to lungs, Grade 3, PR-, HER2- (IHC) Radiation Therapy 12/9/2020 External: Chest wall Dx 1/28/2021, IDC, Left, Stage IV, metastasized to bone Radiation Therapy 3/3/2021 External: Bone
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Jul 16, 2021 03:05PM candy-678 wrote:

Daughterof- I just became that--- ER- PR+ HER2-. I was ER+ and flipped with my latest liver biopsy. I have read it is rare. And my MO says she thinks the PR+ still makes me hormone receptor + with the hormone pathway still working to drive the cancer. I have not changed meds yet. I do not know if there is a Thread on here for ER-/PR+. I have read of 1 other poster on here that has it. Cannot remember who right now.

Found mets on CT for unrelated issue. I only had 2 treatments with IV chemo for the Stage II, then found Stage 4 and switched to hormone therapy/targeted therapy. I consider myself de novo. Xgeva use for bone mets. Liver bx Apr 2021 shows ER- now. Dx 6/2017, ILC/IDC, Left, 3cm, Stage IIB, Grade 3, 0/1 nodes, ER+/PR+, HER2- Surgery 7/11/2017 Lymph node removal: Sentinel; Mastectomy: Left Chemotherapy 7/31/2017 AC Dx 9/2017, ILC/IDC, Stage IV, metastasized to bone/liver, 0/1 nodes, ER+/PR+, HER2- Targeted Therapy 11/1/2017 Ibrance (palbociclib) Hormonal Therapy 11/1/2017 Femara (letrozole), Zoladex (goserelin) Dx 4/2021, ILC/IDC, Stage IV, metastasized to bone/liver, ER-/PR+, HER2- (FISH) Targeted Therapy 9/3/2021 Lynparza Hormonal Therapy 9/4/2021 Zoladex (goserelin)
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Jul 16, 2021 03:14PM candy-678 wrote:

Well appointment with RO and liver surgeon next Tuesday the 20th. Hear what they have to say and ask my questions. I will post after.

Found mets on CT for unrelated issue. I only had 2 treatments with IV chemo for the Stage II, then found Stage 4 and switched to hormone therapy/targeted therapy. I consider myself de novo. Xgeva use for bone mets. Liver bx Apr 2021 shows ER- now. Dx 6/2017, ILC/IDC, Left, 3cm, Stage IIB, Grade 3, 0/1 nodes, ER+/PR+, HER2- Surgery 7/11/2017 Lymph node removal: Sentinel; Mastectomy: Left Chemotherapy 7/31/2017 AC Dx 9/2017, ILC/IDC, Stage IV, metastasized to bone/liver, 0/1 nodes, ER+/PR+, HER2- Targeted Therapy 11/1/2017 Ibrance (palbociclib) Hormonal Therapy 11/1/2017 Femara (letrozole), Zoladex (goserelin) Dx 4/2021, ILC/IDC, Stage IV, metastasized to bone/liver, ER-/PR+, HER2- (FISH) Targeted Therapy 9/3/2021 Lynparza Hormonal Therapy 9/4/2021 Zoladex (goserelin)
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Jul 16, 2021 03:41PM BevJen wrote:

Candy,

I am still confused why you are seeing the RO if you are considering local liver treatments -- such as ablation or Y90 -- to my knowledge, those are usually done by an interventional radiologist (IR)??

Good luck gathering your information. We'll all be anxious to hear.

Microwave Ablations,Liver 3x ;Radiation Therapy to Femur (Both) April 2021; total hip replacement (R) and placement of rod (L) to stabilize femur both sides; immunotherapy (single agent - keytruda) Dx 11/2003, ILC, Left, Stage IIIC, 13/18 nodes, ER+/PR+, HER2- Dx 6/2006, ILC, Stage IV, metastasized to other, ER+, HER2- Dx 5/2019, ILC, Stage IV, metastasized to liver, ER+/PR+, HER2- Surgery 7/5/2019 Targeted Therapy 7/31/2019 Ibrance (palbociclib) Immunotherapy Keytruda (pembrolizumab) Surgery Lymph node removal: Left, Sentinel; Mastectomy: Left, Right; Reconstruction (left): Pedicled TRAM flap; Reconstruction (right): Pedicled TRAM flap Chemotherapy TAC Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery Lymph node removal; Mastectomy; Reconstruction (left): Pedicled TRAM flap; Reconstruction (right): Pedicled TRAM flap Hormonal Therapy Faslodex (fulvestrant) Hormonal Therapy Femara (letrozole) Radiation Therapy
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Jul 16, 2021 05:33PM candy-678 wrote:

BevJen- When my MO mentioned Y90 or ablation or radiation (SBRT) as my next option she then consulted RO. I don't know if RO will discuss all these options or what she will discuss. Then my MO also recommended liver resection and so consulted a liver surgeon.

I have all my notes and questions written in a notebook I will take to both appointments and see who does what. Maybe good the 2 appointments are back to back---RO first, then surgeon. But, they are 20 miles apart at separate satellite locations (my cancer center has 5 locations with specialties at each one). You need ____, you go ____.

FYI---- when I looked online at my cancer center website at all the docs listed, the surgeons listed their specialties and a couple of the liver surgeons did mention "ablation procedures" when telling what they specialize in.

Found mets on CT for unrelated issue. I only had 2 treatments with IV chemo for the Stage II, then found Stage 4 and switched to hormone therapy/targeted therapy. I consider myself de novo. Xgeva use for bone mets. Liver bx Apr 2021 shows ER- now. Dx 6/2017, ILC/IDC, Left, 3cm, Stage IIB, Grade 3, 0/1 nodes, ER+/PR+, HER2- Surgery 7/11/2017 Lymph node removal: Sentinel; Mastectomy: Left Chemotherapy 7/31/2017 AC Dx 9/2017, ILC/IDC, Stage IV, metastasized to bone/liver, 0/1 nodes, ER+/PR+, HER2- Targeted Therapy 11/1/2017 Ibrance (palbociclib) Hormonal Therapy 11/1/2017 Femara (letrozole), Zoladex (goserelin) Dx 4/2021, ILC/IDC, Stage IV, metastasized to bone/liver, ER-/PR+, HER2- (FISH) Targeted Therapy 9/3/2021 Lynparza Hormonal Therapy 9/4/2021 Zoladex (goserelin)
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Jul 16, 2021 10:05PM - edited Jul 17, 2021 12:08AM by dutchiris

Candy, You may be thinking about me. I diagnosed with ER+, PR-, HER2- bone mets. After 18 cycles of Ibrance and letrozole, an enlarging ovarian mass was determined to be ER-, moderately PR+, HER2-. I hear it's not very common. I wish I knew of a thread or good source of information for Daughterof, you, and myself. Excuse me if I'm intruding as I don't have liver mets.

Dx 1/25/2013, IDC, Left, Stage IIIC, Grade 2, 19/24 nodes, ER+/PR+, HER2- Chemotherapy 2/22/2013 AC + T (Taxol) Surgery 6/19/2013 Lymph node removal: Left, Underarm/Axillary; Mastectomy: Left; Prophylactic mastectomy: Right Hormonal Therapy 7/2/2013 Radiation Therapy 7/15/2013 Dx 7/26/2019, IDC, Stage IV, metastasized to bone, ER+/PR-, HER2- (IHC) Hormonal Therapy 8/10/2019 Femara (letrozole) Targeted Therapy 8/17/2019 Ibrance (palbociclib) Dx 4/7/2021, IDC, Stage IV, metastasized to other, Grade 3, ER-/PR+, HER2- (FISH) Chemotherapy 5/14/2021 Xeloda (capecitabine)
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Jul 17, 2021 02:09AM NinaCA wrote:

candy 678, I had the usual chemo when first diagnosed, stage 3, adrymyacin cytoxin and taxotere . When I metastasized to the liver changing from tamoxifen to the new aromatase inhibitor femara put me in remission within 6 months and it lasted 14 years. When it reappeared in the liver Ibrance had just been put on the market so I started with targeted therapy. While it was reducing in size I finally decided on ablation. I went to a liver surgeon who said he would try ablation once he went in laparoscopically. Not sure what was actually done, but I was all clear, continuing on Ibrance (total 3.5 years) until it went to small intestine, colon and liver. After intestinal surgery Xeloda put me in NED again for the past 14 months. I’m strongly ER+ which is why hormonals have worked really well for me. Take care, Nin

Dx 2/1998, IDC, Left, 5cm, Stage IIIA, ER+/PR+, HER2- Dx 1/2003, Stage IV, metastasized to liver, ER+/PR+, HER2- Dx 7/2015, Stage IV, metastasized to liver, ER+/PR+, HER2- (FISH) Dx 1/2020, ILC/IDC, Stage IV, metastasized to liver/other, ER+, HER2- (FISH) Hormonal Therapy Faslodex (fulvestrant) Targeted Therapy Ibrance (palbociclib) Chemotherapy Xeloda (capecitabine) Surgery Surgery
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Jul 17, 2021 09:24AM candy-678 wrote:

dutchiris- Thank you for reminding me. My brain anymore, haha. I know there are not many of us on here that post ER-/PR+/HER2-.

NinaCA- Thank you for your post. Interesting. Your longevity was mainly from the hormonals. Yes, the liver ablation helped some of course, but then it came back to your liver (and elsewhere).

That is what I am thinking about. The ones on here that have had ablation or Y90 have had recurrences in the liver at some point after the procedure. So the procedures help for a bit, but then another met somewhere else in the liver occurs.

Wonder what the average time frame is from zapping the liver buggers to new ones cropping up???

Found mets on CT for unrelated issue. I only had 2 treatments with IV chemo for the Stage II, then found Stage 4 and switched to hormone therapy/targeted therapy. I consider myself de novo. Xgeva use for bone mets. Liver bx Apr 2021 shows ER- now. Dx 6/2017, ILC/IDC, Left, 3cm, Stage IIB, Grade 3, 0/1 nodes, ER+/PR+, HER2- Surgery 7/11/2017 Lymph node removal: Sentinel; Mastectomy: Left Chemotherapy 7/31/2017 AC Dx 9/2017, ILC/IDC, Stage IV, metastasized to bone/liver, 0/1 nodes, ER+/PR+, HER2- Targeted Therapy 11/1/2017 Ibrance (palbociclib) Hormonal Therapy 11/1/2017 Femara (letrozole), Zoladex (goserelin) Dx 4/2021, ILC/IDC, Stage IV, metastasized to bone/liver, ER-/PR+, HER2- (FISH) Targeted Therapy 9/3/2021 Lynparza Hormonal Therapy 9/4/2021 Zoladex (goserelin)
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Jul 17, 2021 12:30PM Grannax2 wrote:

Candy, I can answer that question, at least my experience. My first y-90 gave me 18 months before mets that were microscopic started getting big enough to do another y-90. My second one gave me a year before I had progression in liver. I don’t know what the average is but an IR would know.

My microwave ablations are hard to interpret for me. I think the four he got are smaller but not gone completely.

But, now chemo is my only option left and all of them are failing. I just found out about a clinical trial, thanks Dee, that’s here in Dallas at my CC. So, I’m going to talk to my MO about it. It’s for a SERD, I think. Not so toxic as chemo. Of course I have tried Faslodex and it worked on my lungs but not my liver. Grrrr

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Jul 17, 2021 12:53PM candy-678 wrote:

Grannax- Average progression time after the local therapies-- that is on my list of questions for the consults this week. You got, at most, 18months and Nicole had 6 months before her liver progression post procedure. Something to think about.

I hope your clinical trial is an option for you. My prayers are with you.

Found mets on CT for unrelated issue. I only had 2 treatments with IV chemo for the Stage II, then found Stage 4 and switched to hormone therapy/targeted therapy. I consider myself de novo. Xgeva use for bone mets. Liver bx Apr 2021 shows ER- now. Dx 6/2017, ILC/IDC, Left, 3cm, Stage IIB, Grade 3, 0/1 nodes, ER+/PR+, HER2- Surgery 7/11/2017 Lymph node removal: Sentinel; Mastectomy: Left Chemotherapy 7/31/2017 AC Dx 9/2017, ILC/IDC, Stage IV, metastasized to bone/liver, 0/1 nodes, ER+/PR+, HER2- Targeted Therapy 11/1/2017 Ibrance (palbociclib) Hormonal Therapy 11/1/2017 Femara (letrozole), Zoladex (goserelin) Dx 4/2021, ILC/IDC, Stage IV, metastasized to bone/liver, ER-/PR+, HER2- (FISH) Targeted Therapy 9/3/2021 Lynparza Hormonal Therapy 9/4/2021 Zoladex (goserelin)
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Jul 17, 2021 02:02PM BevJen wrote:

Candy,

I had my first liver ablation in July 2019. That held me until Sept 2020 (but I only had one lesion removed in 2019 with the theory being that that would tamp down the other little buggers in there -- and it did.)Second liver ablation incomplete so they went back in Dec. 2020.

Yes, liver ablations, to my understanding, are buying time to further progression (although there are people on these boards for whom the procedures eliminated the problem -- another question to ask: how often does that happen? But buying time is not necessarily a bad thing. You might want to take a look at Memorial Sloan Kettering -- they have really good information about liver procedures (including for metastasis) and that might prompt more questions that you want to ask.

Microwave Ablations,Liver 3x ;Radiation Therapy to Femur (Both) April 2021; total hip replacement (R) and placement of rod (L) to stabilize femur both sides; immunotherapy (single agent - keytruda) Dx 11/2003, ILC, Left, Stage IIIC, 13/18 nodes, ER+/PR+, HER2- Dx 6/2006, ILC, Stage IV, metastasized to other, ER+, HER2- Dx 5/2019, ILC, Stage IV, metastasized to liver, ER+/PR+, HER2- Surgery 7/5/2019 Targeted Therapy 7/31/2019 Ibrance (palbociclib) Immunotherapy Keytruda (pembrolizumab) Surgery Lymph node removal: Left, Sentinel; Mastectomy: Left, Right; Reconstruction (left): Pedicled TRAM flap; Reconstruction (right): Pedicled TRAM flap Chemotherapy TAC Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery Lymph node removal; Mastectomy; Reconstruction (left): Pedicled TRAM flap; Reconstruction (right): Pedicled TRAM flap Hormonal Therapy Faslodex (fulvestrant) Hormonal Therapy Femara (letrozole) Radiation Therapy
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Jul 17, 2021 02:04PM BevJen wrote:

NinaCA,

You said that xeloda put you into remission for the last 14 months. Are you still taking it? And what is your doc's expectation for how long you will take it? Asking bc I just finished one cycle of xeloda so wondering if it does its thing, do you ever get a break?

Thanks

Microwave Ablations,Liver 3x ;Radiation Therapy to Femur (Both) April 2021; total hip replacement (R) and placement of rod (L) to stabilize femur both sides; immunotherapy (single agent - keytruda) Dx 11/2003, ILC, Left, Stage IIIC, 13/18 nodes, ER+/PR+, HER2- Dx 6/2006, ILC, Stage IV, metastasized to other, ER+, HER2- Dx 5/2019, ILC, Stage IV, metastasized to liver, ER+/PR+, HER2- Surgery 7/5/2019 Targeted Therapy 7/31/2019 Ibrance (palbociclib) Immunotherapy Keytruda (pembrolizumab) Surgery Lymph node removal: Left, Sentinel; Mastectomy: Left, Right; Reconstruction (left): Pedicled TRAM flap; Reconstruction (right): Pedicled TRAM flap Chemotherapy TAC Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery Lymph node removal; Mastectomy; Reconstruction (left): Pedicled TRAM flap; Reconstruction (right): Pedicled TRAM flap Hormonal Therapy Faslodex (fulvestrant) Hormonal Therapy Femara (letrozole) Radiation Therapy
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Jul 17, 2021 02:26PM candy-678 wrote:

So here is a thought---- with Grannax, Nicole, and BevJen that had liver procedures, did they change your systemic therapy during the time you were stable from the procedure??? Grannax was stable liver wise for 18months--- was there a change in systemic therapy during that time? And BevJen, during the 1 yr after the first ablation was you on the same systemic treatment? My MO mentioned zapping the buggers and keeping me on the same systemic treatment. IF the systemic treatment is not as effective anymore, then why not change it? So new liver mets do not crop up WHILE we are zapping the current ones?

Found mets on CT for unrelated issue. I only had 2 treatments with IV chemo for the Stage II, then found Stage 4 and switched to hormone therapy/targeted therapy. I consider myself de novo. Xgeva use for bone mets. Liver bx Apr 2021 shows ER- now. Dx 6/2017, ILC/IDC, Left, 3cm, Stage IIB, Grade 3, 0/1 nodes, ER+/PR+, HER2- Surgery 7/11/2017 Lymph node removal: Sentinel; Mastectomy: Left Chemotherapy 7/31/2017 AC Dx 9/2017, ILC/IDC, Stage IV, metastasized to bone/liver, 0/1 nodes, ER+/PR+, HER2- Targeted Therapy 11/1/2017 Ibrance (palbociclib) Hormonal Therapy 11/1/2017 Femara (letrozole), Zoladex (goserelin) Dx 4/2021, ILC/IDC, Stage IV, metastasized to bone/liver, ER-/PR+, HER2- (FISH) Targeted Therapy 9/3/2021 Lynparza Hormonal Therapy 9/4/2021 Zoladex (goserelin)
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Jul 17, 2021 02:42PM - edited Jul 17, 2021 02:43PM by BevJen

For my first ablation in the summer of 2019, I was just starting up on Ibrance and fulvestrant. I had been on femara from 2006-2019. My MO started me on fulvestrant prior to the ablation, and then on Ibrance about 4 weeks after the ablation. For the other ablations, I stayed on the same stuff. Took a short break from Ibrance (like maybe an extra week's break) each time, but continued on fulvestrant.

I think from my reading there are different theories on whether to zap all liver mets that can be seen, or only to zap the largest and seemingly most aggressive one. That was what my doc choose to do (go with the largest most aggressive.) Seemed to work better the first time, I think.

Microwave Ablations,Liver 3x ;Radiation Therapy to Femur (Both) April 2021; total hip replacement (R) and placement of rod (L) to stabilize femur both sides; immunotherapy (single agent - keytruda) Dx 11/2003, ILC, Left, Stage IIIC, 13/18 nodes, ER+/PR+, HER2- Dx 6/2006, ILC, Stage IV, metastasized to other, ER+, HER2- Dx 5/2019, ILC, Stage IV, metastasized to liver, ER+/PR+, HER2- Surgery 7/5/2019 Targeted Therapy 7/31/2019 Ibrance (palbociclib) Immunotherapy Keytruda (pembrolizumab) Surgery Lymph node removal: Left, Sentinel; Mastectomy: Left, Right; Reconstruction (left): Pedicled TRAM flap; Reconstruction (right): Pedicled TRAM flap Chemotherapy TAC Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery Lymph node removal; Mastectomy; Reconstruction (left): Pedicled TRAM flap; Reconstruction (right): Pedicled TRAM flap Hormonal Therapy Faslodex (fulvestrant) Hormonal Therapy Femara (letrozole) Radiation Therapy
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Jul 17, 2021 03:48PM KarPC wrote:

Candy - my liver ablation kept my liver clear for 3.5 years. While I had little lung nodules that slowly grew over that time, it was wonderful to have clear scans in my liver for that long.

​May 2021 lung nodule flipped from ER+ to triple negative. Liver tumor may still be ER+ Dx 4/2016, IDC, Both breasts, 2cm, Stage IIA, Grade 3, 0/14 nodes, ER+/PR-, HER2- Surgery 5/17/2016 Lymph node removal: Sentinel; Mastectomy: Left, Right; Reconstruction (left); Reconstruction (right) Chemotherapy 6/10/2016 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Hormonal Therapy 10/1/2016 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Dx 2/1/2018, IDC, <1cm, Stage IV, metastasized to liver/lungs, Grade 3, ER+/PR-, HER2- Radiation Therapy 2/2/2018 External: Liver Targeted Therapy 2/16/2018 Ibrance (palbociclib) Hormonal Therapy 2/17/2018 Faslodex (fulvestrant), Femara (letrozole), Zoladex (goserelin) Chemotherapy 2/19/2020 Xeloda (capecitabine) Targeted Therapy 10/14/2020 Afinitor (everolimus) Targeted Therapy 6/1/2021 Piqray (alpelisib)
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Jul 17, 2021 04:21PM candy-678 wrote:

Wow, KarPC. 3.5 years. Were you on systemic therapy during that time? Was there a change in systemics with the ablation?

BevJen- I am going to ask about if they wanted to zap all 4 of mine, or the largest 1 or 2.

Found mets on CT for unrelated issue. I only had 2 treatments with IV chemo for the Stage II, then found Stage 4 and switched to hormone therapy/targeted therapy. I consider myself de novo. Xgeva use for bone mets. Liver bx Apr 2021 shows ER- now. Dx 6/2017, ILC/IDC, Left, 3cm, Stage IIB, Grade 3, 0/1 nodes, ER+/PR+, HER2- Surgery 7/11/2017 Lymph node removal: Sentinel; Mastectomy: Left Chemotherapy 7/31/2017 AC Dx 9/2017, ILC/IDC, Stage IV, metastasized to bone/liver, 0/1 nodes, ER+/PR+, HER2- Targeted Therapy 11/1/2017 Ibrance (palbociclib) Hormonal Therapy 11/1/2017 Femara (letrozole), Zoladex (goserelin) Dx 4/2021, ILC/IDC, Stage IV, metastasized to bone/liver, ER-/PR+, HER2- (FISH) Targeted Therapy 9/3/2021 Lynparza Hormonal Therapy 9/4/2021 Zoladex (goserelin)
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Jul 17, 2021 09:03PM NinaCA wrote:

Bev Jen- Good questions. As of today I am still taking Xeloda, even though my markers increased dramatically but the PET was clear (Doc said he cleared it with the tumor board). In July 2021, My follow up PET scan after 3 months on Xeloda, showed new tumors were "resolved". Liver and colon mets were gone, and have stayed gone. My breaks- I went from 6 pills a day after 5 months on Xeloda (500 mg each) to 5 pills a day with an extra week off to recover from side effects (I'm still on 14 days on, 7 off). The break helped me get back on the drug. Only recently have I considered reducing my meds slightly (doc suggested taking one to two days off in the middle to ease symptoms to still be aggressive but not "whimp out" (my words) to overall reduced dosage. Last cycle I reduced it to 4 pills the last 3 days. He trusts my judgement. Over time my feet and hands have become hardened to what each cycle brings but find a new way to bother me, this time my left big toe (big toe nails are susceptible). Once I was walking on foam rubber strapped to my feet! I have a container of remedies depending on what is happening at the time. I enjoy the good days when walking is no problem and all I need is a good layer of Aquafor several times a day and maybe an Immodium for the diarrhea (only at end of cycle). Hope you get to tolerate the drug better, find the dosage that works best. Other people take even lower dosages.

Candy- My ablation/surgery lasted 4 years, 2016 - 2020, before recurring Dec. 2020. I was taking Ibrance/faslodex during this time. Initially, in 2015 I had been taking Ibrance for a year before deciding on sugery- the tumor had shrunk to 16 mm x 12 mm, previously 2 cm x 14 mm. so I went for the ablation. My new liver tumors in 2021 were resolved with Xeloda in 3 months.

Take Care All, Nina :)

Dx 2/1998, IDC, Left, 5cm, Stage IIIA, ER+/PR+, HER2- Dx 1/2003, Stage IV, metastasized to liver, ER+/PR+, HER2- Dx 7/2015, Stage IV, metastasized to liver, ER+/PR+, HER2- (FISH) Dx 1/2020, ILC/IDC, Stage IV, metastasized to liver/other, ER+, HER2- (FISH) Hormonal Therapy Faslodex (fulvestrant) Targeted Therapy Ibrance (palbociclib) Chemotherapy Xeloda (capecitabine) Surgery Surgery
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Jul 17, 2021 10:21PM Kabuki wrote:

I saw the oncologist yesterday. I’m starting the Verzenio/Fulvestrant regimen. He gave me a month of Verzenio samples and put a request in to my insurance for authorization for Fulvestrant.

He gave me a choice of Letrazole or Fulvestrant. I don’t know if there are any studies that show one being better than the other for overall survival.

I asked him what my prognosis range is and he said that there was a study done with oncologists predicting the prognosis of their stage 4 patients and they were way off with breast cancers but more accurate with more aggressive cancers such as pancreas.

I had nausea and vomiting today after my morning dose but was feeling queasy before I took it. I was also given Imodium.

He referred me to an oncologist at UCSF for a second opinion and to see if I qualify for any studies.


I have been very tired and slept most of the day. The oncologist said that they will take care of the fatigue but did not mention how. I have no energy and everything is piling up. I can’t even clean house or finish my garden. It’s very depressing


Dx 6/2009, IDC, Left, 6cm+, Stage IIIC, Grade 2, 3/7 nodes, ER+/PR+, HER2- (IHC) Dx 7/2021, IDC, Left, Stage IV, metastasized to bone/liver, ER+/PR-, HER2- (IHC) Targeted Therapy Verzenio Radiation Therapy Surgery Mastectomy: Left; Reconstruction (left): DIEP flap Chemotherapy AC + T (Taxol)
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Jul 17, 2021 10:44PM KarPC wrote:

Candy - Yes, I've been on systemic treatment the entire time especially since I had small lung nodules that slowly grew over the years. I have had regular scans of my liver every 3 months though and was always surprised the scans of my liver showed no mets for the 3.5 years.

​May 2021 lung nodule flipped from ER+ to triple negative. Liver tumor may still be ER+ Dx 4/2016, IDC, Both breasts, 2cm, Stage IIA, Grade 3, 0/14 nodes, ER+/PR-, HER2- Surgery 5/17/2016 Lymph node removal: Sentinel; Mastectomy: Left, Right; Reconstruction (left); Reconstruction (right) Chemotherapy 6/10/2016 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Hormonal Therapy 10/1/2016 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Dx 2/1/2018, IDC, <1cm, Stage IV, metastasized to liver/lungs, Grade 3, ER+/PR-, HER2- Radiation Therapy 2/2/2018 External: Liver Targeted Therapy 2/16/2018 Ibrance (palbociclib) Hormonal Therapy 2/17/2018 Faslodex (fulvestrant), Femara (letrozole), Zoladex (goserelin) Chemotherapy 2/19/2020 Xeloda (capecitabine) Targeted Therapy 10/14/2020 Afinitor (everolimus) Targeted Therapy 6/1/2021 Piqray (alpelisib)
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Jul 18, 2021 01:03AM Sheilaleximama- wrote:

hello to anyone reading this. I am new on here and it feels weird to read everyone's stuff without at least saying something. Not really sure how all this works. I found this site through A comment left on a TiKTok of someone dealing with what I'm dealing with in the hopes of getting some info on what's next. I feel completely in the dark waiting on my full pathology report of a biopsy done to my liver. The doctor confirmed it's a spread but then didn't have any more info and I'm left waiting 2 weeks to know more. It's driving me absolutely crazy. I can't sleep, my mind is going to the worse case automatically, and I have zero energy. I've also discovered that I have put much faith in my doctor and know very little about my own cancer. The questions to get my profile started stumped me. Like I know some stuff but I didn't even realize I was doing targeted therapy. SMH

If anyone would be so kind as to give me any experience with liver Mets I'd greatly appreciate it.
Dr. Google isn't kind and I about fainted when I saw the prognosis for liver Mets being 6 months. Like I literally had to tell my brain “Nope unsee that please" I can't fathom that right now. I have a 4 year old daughter who has autism and I'm doing all I can to get her all she needs with very little support. She almost won't let anyone else help her. Wow I had a lot to say and that just a smidge of what's going on with me. Desperate for a little HOPE.

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Jul 18, 2021 06:54AM Lili75 wrote:

Hello,

I am new in the Forum and I created a new topic : How long with Ibrance?

NB : I am not allowed to post the link of the new topic directly in this message.

Because I received few answers and see that this topic is very active, I wonder if you could reply to it. It may help sum-up all the strategies used for keeping Ibrance or after Ibrance

Thanks very much,

Love

Surgery 11/11/2017 Lymph node removal: Sentinel; Mastectomy: Left Dx 11/12/2017, LCIS, Left, 1cm, Grade 1, 0/2 nodes Hormonal Therapy 12/8/2019 Arimidex (anastrozole), Zoladex (goserelin) Dx 12/9/2019, 1cm, Stage IV, metastasized to bone/liver/lungs, ER+/PR+, HER2- Targeted Therapy Ibrance (palbociclib) Radiation Therapy External: Bone
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Jul 18, 2021 08:46AM leftfootforward wrote:

shelialeximom- I am almost 9 years out from my liver Mets diagnosis. My youngest was 2 my oldest was 20 and I hade two in the middle at 5 and 7. The oldest just graduated from high school and the youngest fyom elementary school.

Hope that helps as you navigate this most difficult time.

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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Jul 18, 2021 11:08AM - edited Jul 18, 2021 11:09AM by D37

shelialeximom, I was in your situation last year at this time. The waiting is the hardest part. Don't listen to what Dr. Google says, stay away! I'm sure a lot on the internet is outdated and not accurate. Everyone's situation is different but when I finally had all of the information and had my appointment with my MO, he reassured me that my prognosis was not as bad as I had feared and that there are a lot of treatments available. You're not alone.

Nicole, I've been thinking of you. Everyone is in my thoughts. I do not post often but please know that I care.

Denise

Dx 7/2020, ER+/PR+, HER2+ Hormonal Therapy 8/11/2020 Chemotherapy Taxol (paclitaxel)
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Jul 18, 2021 11:55AM Sheilaleximama- wrote:

Thank you, yes that does help. I smiled and told my husband. I’m so happy for you as well. I pray your medicines keep working for you.

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Jul 18, 2021 11:58AM Sheilaleximama- wrote:

thank you for responding. I am hopeful thanks to all you guys comments. It’s so scary when you have no idea what this is trying to take over your body. I just want to take care of my daughter and live every moment to the fullest.

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Jul 18, 2021 06:11PM Kabuki wrote:

Thank you, AlabamaDee. I didn’t have nausea with last night’s or this mornings dose. I’m still extremely fatigued and hope that it’s temporary. To do the smallest chore is a big deal right now.

I will check to see if the office has a weekend number. I’m going to call tomorrow and ask for an anti emetic

Dx 6/2009, IDC, Left, 6cm+, Stage IIIC, Grade 2, 3/7 nodes, ER+/PR+, HER2- (IHC) Dx 7/2021, IDC, Left, Stage IV, metastasized to bone/liver, ER+/PR-, HER2- (IHC) Targeted Therapy Verzenio Radiation Therapy Surgery Mastectomy: Left; Reconstruction (left): DIEP flap Chemotherapy AC + T (Taxol)
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Jul 19, 2021 02:53AM BSandra wrote:

Dear All, I cannot stop thinking of Arolsson, JFL and Bliss... has anyone heard anything how they are doing? Saulius

Since May'21:NED. Mar'21:axilla LN surgery. Sep'19-Mar'21:NED. Feb'19:recurrence, left breast,IBC. May'18-Feb'19:NED. Jun'18:DC/CIK. Aug'17:stage IV de novo at age 33. Dx 8/4/2017, IDC, Left, 6cm+, Stage IV, metastasized to liver, Grade 2, ER-/PR-, HER2+ (IHC) Chemotherapy 8/27/2017 Taxotere (docetaxel) Targeted Therapy 8/28/2017 Herceptin (trastuzumab) Targeted Therapy 8/28/2017 Perjeta (pertuzumab) Chemotherapy 3/12/2019 Taxotere (docetaxel) Surgery 7/22/2019 Mastectomy: Left Radiation Therapy 9/9/2019 Whole-breast: Lymph nodes, Chest wall Surgery 4/15/2021 Lymph node removal: Underarm/Axillary Radiation Therapy 12/13/2021 3DCRT: Lymph nodes
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Jul 19, 2021 11:52AM Kattysmith wrote:

BSandra,

I sent Arolsson a message June 10th to see how she was doing. She was preparing for radiation on the spot in her spine that will hopefully release the nerve root that is keeping her for weeks on end. I haven't heard back from her since then and June was pretty stressful and crazy for us so I didn't reach out again. I'm hoping that things have improved for her as she literally couldn't move her back without being in excruciating pain.

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 11/3/2015 AC Hormonal Therapy 2/4/2016 Femara (letrozole) Targeted Therapy 2/4/2016 Ibrance (palbociclib) Immunotherapy 12/22/2018 Hormonal Therapy Faslodex (fulvestrant)
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Jul 19, 2021 12:01PM moth wrote:

Saulius, I have seen Arollsson on Twitter. She's just starting her 9th line, carboplatin. I haven't seen the other peeps.

Kabuki, fatigue can be a combo of physical issues in the liver itself and depression. I was struck hard by it in early months of my dx last year. I did end up needing blood transfusions as my Hgb was low. Walking outside helped. There's a balance between rest and exercise that is hard to find but exercise does make things better. Make sure you're eating enough. Your body needs a lot of building blocks to rebuild the damage from the cancer and the treatments.

Sheilaleximama, sorry you find yourself here. Prognosis depends very much on hormone markers and how you respond to the treatment. While it is impossible to predict how an individual will do, we do have large scale analysis of metastatic breast ca pts from the SEER database from 2010-2015 which shows survival curves based on hormone markers and number of mets. I can send that to you (or anyone else) by PM

Lili, from international real world studies, ibrance/palbociclib PFS median was 26.4 months. https://pubmed.ncbi.nlm.nih.gov/31451366/ It is impossible to predict how an individual will respond. I know people who had to move on from it within a much shorter time. you can sometimes get a sense of how long people stay on. If you are looking for what comes next, the NCCN patients guidelines are available online. A poster here Bestbird also has a continuously updated ebook with the latest recommendations and treatments lines.


No news from me, feeling good. Had Tecentriq last Thurs. This Wed is labs, visit with MO and Thurs should be Abraxane if all goes well :)


I take weekends off

Initial dx at 50. Seriously?? “Sometimes the future changes quickly and completely and we’re left with only the choice of what to do next." blog: Never Tell Me the Odds

Dx 12/2017, IDC, Left, 1cm, Stage IA, Grade 3, 0/5 nodes, ER-/PR-, HER2- (IHC) Surgery 12/12/2017 Lumpectomy: Left; Lymph node removal: Sentinel Chemotherapy 2/14/2018 AC + T (Taxol) Radiation Therapy 8/13/2018 Whole-breast: Breast Dx 2/2020, IDC, Stage IV, metastasized to liver/lungs, Grade 3, ER-/PR-, HER2- Chemotherapy 3/18/2020 Taxol (paclitaxel) Immunotherapy 3/19/2020 Tecentriq (atezolizumab) Chemotherapy 11/26/2020 Abraxane (albumin-bound or nab-paclitaxel) Dx 12/9/2020, IDC, Right, Stage IV, metastasized to lungs, Grade 3, PR-, HER2- (IHC) Radiation Therapy 12/9/2020 External: Chest wall Dx 1/28/2021, IDC, Left, Stage IV, metastasized to bone Radiation Therapy 3/3/2021 External: Bone
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Jul 19, 2021 04:46PM candy-678 wrote:

*******Update------

Had to cancel appointments for RO and liver surgeon consults for Tuesday. Insurance. Enough said, right. They need a referral letter (from my PCP no less) for any specialty doc. Then, takes 7-14 days to approve. I even need a referral letter for my MO -- that I am already established with !!!!! So, rescheduled RO and liver surgeon consults for next Tuesday the 27th and have to call Monday the 26th to confirm that it was approved before I go to the appointments.

Also, going to be late on Lupron injection this month, and late on Ibrance refills due to insurance wanting prior auth on file.

This insurance is a joke.

Any specialists need a referral--- Palliative Care too.

Found mets on CT for unrelated issue. I only had 2 treatments with IV chemo for the Stage II, then found Stage 4 and switched to hormone therapy/targeted therapy. I consider myself de novo. Xgeva use for bone mets. Liver bx Apr 2021 shows ER- now. Dx 6/2017, ILC/IDC, Left, 3cm, Stage IIB, Grade 3, 0/1 nodes, ER+/PR+, HER2- Surgery 7/11/2017 Lymph node removal: Sentinel; Mastectomy: Left Chemotherapy 7/31/2017 AC Dx 9/2017, ILC/IDC, Stage IV, metastasized to bone/liver, 0/1 nodes, ER+/PR+, HER2- Targeted Therapy 11/1/2017 Ibrance (palbociclib) Hormonal Therapy 11/1/2017 Femara (letrozole), Zoladex (goserelin) Dx 4/2021, ILC/IDC, Stage IV, metastasized to bone/liver, ER-/PR+, HER2- (FISH) Targeted Therapy 9/3/2021 Lynparza Hormonal Therapy 9/4/2021 Zoladex (goserelin)

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