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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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Mar 30, 2021 06:13PM BevJen wrote:

Dee,

I know this scan was weighing heavily on your mind, so I'm so very happy for you. Take a deep breath.

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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Mar 30, 2021 06:24PM Sadiesservant wrote:

Great news Dee!

Husband, totally understand and really appreciate you flagging this. We may still have a chance and it may be a cheaper option.

Dx 4/2001, IDC, Right, 1cm, Stage IIA, Grade 3, 1/10 nodes, ER+ Surgery 5/10/2001 Lumpectomy: Right; Lymph node removal: Right, Sentinel, Underarm/Axillary Chemotherapy 6/7/2001 CEF Radiation Therapy 12/17/2001 Whole-breast: Breast Hormonal Therapy 12/20/2001 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Hormonal Therapy 1/2/2007 Femara (letrozole) Hormonal Therapy 10/21/2007 Arimidex (anastrozole) Dx 1/3/2017, IDC, Right, Stage IV, metastasized to bone/lungs, ER+/PR+, HER2- Chemotherapy 1/27/2017 Taxol (paclitaxel) Hormonal Therapy 3/28/2017 Arimidex (anastrozole) Targeted Therapy 4/19/2017 Ibrance (palbociclib) Dx 10/12/2017, IDC, Right, Stage IV, metastasized to other Chemotherapy 10/20/2017 Xeloda (capecitabine) Radiation Therapy 11/15/2017 External: Bone Hormonal Therapy 1/18/2018 Faslodex (fulvestrant) Radiation Therapy 8/2/2018 External: Bone Radiation Therapy 11/5/2018 External: Bone Targeted Therapy 10/9/2019 Verzenio Radiation Therapy 11/3/2020 External: Bone Dx 1/22/2021, IDC, Right, 1cm, Stage IV, metastasized to liver, Grade 2, ER+/PR+, HER2- Chemotherapy 2/4/2021 Xeloda (capecitabine) Chemotherapy 10/8/2021 Navelbine (vinorelbine) Chemotherapy 1/6/2022 Halaven (eribulin)
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Mar 30, 2021 08:10PM candy-678 wrote:

Dee- Congrats on a clear MRI.

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 8/1/2017 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) Hormonal Therapy 9/4/2021 Zoladex (goserelin) Targeted Therapy 9/4/2021 Lynparza
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Mar 30, 2021 08:22PM Rosie24 wrote:

Dee, Fabulous news in your MRI! Congrats!

Dx 1/23/2019, DCIS/IDC, Left, 3cm, Stage IV, metastasized to liver, Grade 2, ER+/PR-, HER2- (FISH) Hormonal Therapy 1/24/2019 Femara (letrozole) Targeted Therapy 1/24/2019 Ibrance (palbociclib) Surgery 12/3/2019 Lumpectomy: Left Surgery 12/3/2019 Lymph node removal: Sentinel Dx 1/6/2022, IDC, Stage IV, metastasized to liver, ER-/PR-, HER2- Radiation Therapy Whole-breast
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Mar 30, 2021 09:08PM BlueGirlRedState wrote:

Alabama - congratulations on the clear MRI!

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Mar 30, 2021 10:45PM leftfootforward wrote:

yay Dee snd husband.

Tomorrow I have my PET scan to check on that abnormal lymph node in my chest.

Also found out today that the shoulder pain I have been experiencing is just frozen shoulder snd calcium deposits in my tendons. Time and exercises should take care of it over the next year or so. I will probably get a shot next week to help with the pain ( evidently I am in one of the more painful stages of frozen shoulder).

Thinking of all of yo

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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Mar 31, 2021 02:00AM BSandra wrote:

Dee, Husband11, great news, congrats!

Husband11, we basically have same issue: after first 3-4 chemo therapies liver was resolved (my wife was de novo stage IV) and stays "same", and with "small scars" on ultrasound, but absolutely clear on MRI and CTs for past 40 months. Liver echo-geneity is very good, all liver parameters are always perfect, bc markers are all below norms. Ultrasound specialists say: probably scar tissue.

We still wait for the biopsy results of that II level lymph node. Why does it last so long (8 days already!)?

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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Mar 31, 2021 05:21AM BSandra wrote:

Dang, biopsy positive in that lymph node:/// Now on to whole body CT, meeting with the surgeon, etc. Oh man, how tired I am of all of this... 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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Mar 31, 2021 06:30AM KBL wrote:

Left, I have experienced both frozen shoulder and tendinitis (in different shoulder) with calcium, twice in the one shoulder and once in the other. I had a cortisone shot twice for the tendinitis ten years apart. It was amazing how it helped. That pain was excruciating. When I got frozen shoulder I had a shot, and it didn’t do much. I didn’t do any treatment really for it, and after about a year, I’m finally able to raise my shoulder. It never hurt while it was down, which I was very grateful for. I probably should have done some PT. It still hurts, but I’m actually able to lift it almost straight up. That calcium on the shoulder is very painful. I hope you can get some relief soon.

BSandra, I’m so sorry it was positive.

Missed diagnosis from 8/2013 - De Novo ILC - No primary found. Mets to full spine, femurs, skull, and stomach. Dx 5/1/2019, ILC, Stage IV, metastasized to bone/other, ER+/PR+, HER2- (FISH) Targeted Therapy 6/24/2019 Ibrance (palbociclib) Hormonal Therapy 6/24/2019 Femara (letrozole) Hormonal Therapy 9/20/2021 Faslodex (fulvestrant) Chemotherapy 9/26/2021 Xeloda (capecitabine)
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Mar 31, 2021 07:23AM BevJen wrote:

Saulius,

I am so sorry to hear of the positive biopsy. But -- maybe it is the lymph node catching the cancer cells and hopefully that's it.

I am thinking of you, your wife, and your little boy, and hold you all close in my heart.


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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Mar 31, 2021 08:07AM HopeandGratitude wrote:

LFF - in your pocket for PET scan tomorrow. Praying for good results.

Saulius- sorry to hear biopsy results positive on lymph node, but praying it’s just the node!!! Hoping full body CT is clear. Not PET? I hear you. We are all so tired.

Dx 3/1/2002, ILC, Left, 6cm+, Stage IIIB, Grade 3, 0/14 nodes, ER+/PR+, HER2- (FISH) Chemotherapy 3/27/2002 CEF Chemotherapy 6/4/2002 AT Surgery 8/28/2002 Mastectomy: Left; Reconstruction (left): Free TRAM flap, Nipple reconstruction, Nipple tattoo Radiation Therapy 10/15/2002 Whole-breast: Breast, Lymph nodes, Chest wall Hormonal Therapy 1/4/2003 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Dx 1/12/2018, IDC, Left, 2cm, Stage IIIB, Grade 3, 1/1 nodes, ER+/PR+, HER2- (FISH) Surgery 2/14/2018 Lumpectomy: Left; Lymph node removal: Left Chemotherapy 4/3/2018 CMF Chemotherapy 8/5/2018 Taxol (paclitaxel) Radiation Therapy 10/9/2018 External: Breast, Lymph nodes, Chest wall Dx 3/13/2019, IDC, 1cm, Stage IV, metastasized to liver, Grade 3, ER+/PR-, HER2- (FISH) Hormonal Therapy 3/13/2019 Femara (letrozole) Targeted Therapy 3/24/2019 Ibrance (palbociclib) Targeted Therapy 10/24/2019 Verzenio Dx 3/18/2020, IDC, 1cm, Stage IV, metastasized to bone, ER+/PR-, HER2- (FISH) Hormonal Therapy 3/20/2020 Aromasin (exemestane) Hormonal Therapy 4/6/2020 Faslodex (fulvestrant)
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Mar 31, 2021 08:15AM NicoleRod wrote:

LFF glad it wasnt mets in Shoulder...in your pocket!

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 **TNBC AUG 2021 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 4/29/2019 Surgery Chemotherapy Doxil (doxorubicin) Chemotherapy Xeloda (capecitabine) Radiation Therapy Surgery Mastectomy: Left, Right
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Mar 31, 2021 09:08AM ShetlandPony wrote:

Candy, about getting results of genomic testing: I went to the company’s web site and created a patient account. This allowed me to track the progress of my test and see when my results were in and read my report. To see it the soonest, the doctor has to “release” it which means you may need to contact your doctor or nurse and ask them to do so. I think they just have to go online and click a button or something, so it should be no trouble. After a certain time period it is available without that step.


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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Mar 31, 2021 09:23AM Kattysmith wrote:

Dee, that is wonderful news! I am so happy for you!!!

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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Mar 31, 2021 09:27AM - edited Mar 31, 2021 09:28AM by ShetlandPony

Husband11, would I be correct in guessing your wife has ILC?


Dee, you are taking calcium, D3, and magnesium for your bones. You might want to consider the COMB protocol and run it by your doctor. Mine had no objections except for the strontium, and I and my endocrinologist agree with her on that. I am not interested in taking bisphosphonates.

COMB (Combination of Micronutrients for Bone) study protocol:

(1) Docosahexanoic acid or DHA (from Purified Fish Oil): 250 mg/day

(2) Vitamin D3: 2000 IU/day

(3) Vitamin K2 (non-synthetic MK7 form): 100 ug/day

(4) Strontium citrate: 680 mg/day (NOT taking this)

(5) Elemental magnesium: 25 mg/day

(6) Dietary sources of calcium recommended

(7) Daily impact exercising encouraged

(Make sure the fish oil is a brand not high mercury.)

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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Mar 31, 2021 09:27AM Kattysmith wrote:

Saulius, I am so sorry to hear about the positive lymph node, but I'm keeping my fingers crossed and hopes high that the CT is clear. Hang in there, this constant vigilance is so wearing on the body and soul.

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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Mar 31, 2021 09:43AM candy-678 wrote:

ShetlandPony- I am going to message MO nurse and ask for Guardant results. I was thinking a person could contact the company and ask for a copy, but I do not want to look like I am going behind my MO's back. So I will ask them if it is ok. I do want to peruse the results before my MO appt so I know what they say and can communicate better to my MO my options.

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 8/1/2017 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) Hormonal Therapy 9/4/2021 Zoladex (goserelin) Targeted Therapy 9/4/2021 Lynparza
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Mar 31, 2021 09:54AM ShetlandPony wrote:

It is not going behind anyone’s back to look at your Guardant account. You just say, “Hey, I noticed my Gurdant results are in. Would you please release them so I can review them before we meet? Thanks.” Look at it this way if it helps you: By looking at results online you are saving them the trouble of making a copy for you or emailing it. Candy, you are not a little girl who needs permission. You are an adult managing her own health and medical records. Assume you are a competent adult and others are more likely to treat you as one. I say this with love and a smile, my friend!

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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Mar 31, 2021 10:17AM - edited Mar 31, 2021 10:18AM by candy-678

Thanks Shetland. I guess I still think of the doctor as the leader. I did not want to look pushy by saying "I know the results already. I called the Guardant company and got them." Seems like I don't have trust in my doctor to ask them for results. Like I think they are trying to hide the results from me. Like I am going around them.

I do like how you worded it though.

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 8/1/2017 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) Hormonal Therapy 9/4/2021 Zoladex (goserelin) Targeted Therapy 9/4/2021 Lynparza
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Mar 31, 2021 10:45AM BevJen wrote:

Candy,

I understand where you are coming from, and you have to do what works for you. But I agree with Shetland that gathering information about what's going on in your body from your doctor and from any sources you have available Is generally a prudent idea. Personally, I have had situations where doctors have just ignored things in my record, and they were things that in retrospect should have been discussed with me.

I am just the opposite of you. I see the doctor as the facilitator and the gatekeeper to further information holders. Frankly, I trust my doctors but only so far. I want to know what they know. I have caught errors in my visit notes, etc., and so I guess my attitude is trust but verify.


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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Mar 31, 2021 11:28AM Sadiesservant wrote:

Saulius - so sorry to hear about the lymph node. I sincerely hope that's the extent of it and that the little guy caught the cancer as others have indicated.

Candy, totally get why you struggle with "going around your doc". It's an interesting dance with MBC and, to be honest, I feel for physicians at times. They are sort of in a damned if you do, damned if you don't situation. My preference would always to have my results before I meet with my MO so that I am prepared for an informed conversation. However, I think there continues to be reluctance to provide bad news via email and certainly some would not handle it well. And yet, I think we can all read between the lines. I think I mentioned earlier that my MO is very quick to give me the scan results when all is well. When it's not... he delays. I recall when I was initially diagnosed in 2001 they lost my results for a bit and then I had "the call" that I needed to go in to see my GP. I instantly knew and the poor guy was uncomfortable when I indicated I kinda figured it out!

Sorry for the ramble but ultimately, as Shetland and BevJen have noted, this is our information and we should be able to access it as easily as the docs. Pet peeve as the paternalistic approach gets old...

Dx 4/2001, IDC, Right, 1cm, Stage IIA, Grade 3, 1/10 nodes, ER+ Surgery 5/10/2001 Lumpectomy: Right; Lymph node removal: Right, Sentinel, Underarm/Axillary Chemotherapy 6/7/2001 CEF Radiation Therapy 12/17/2001 Whole-breast: Breast Hormonal Therapy 12/20/2001 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Hormonal Therapy 1/2/2007 Femara (letrozole) Hormonal Therapy 10/21/2007 Arimidex (anastrozole) Dx 1/3/2017, IDC, Right, Stage IV, metastasized to bone/lungs, ER+/PR+, HER2- Chemotherapy 1/27/2017 Taxol (paclitaxel) Hormonal Therapy 3/28/2017 Arimidex (anastrozole) Targeted Therapy 4/19/2017 Ibrance (palbociclib) Dx 10/12/2017, IDC, Right, Stage IV, metastasized to other Chemotherapy 10/20/2017 Xeloda (capecitabine) Radiation Therapy 11/15/2017 External: Bone Hormonal Therapy 1/18/2018 Faslodex (fulvestrant) Radiation Therapy 8/2/2018 External: Bone Radiation Therapy 11/5/2018 External: Bone Targeted Therapy 10/9/2019 Verzenio Radiation Therapy 11/3/2020 External: Bone Dx 1/22/2021, IDC, Right, 1cm, Stage IV, metastasized to liver, Grade 2, ER+/PR+, HER2- Chemotherapy 2/4/2021 Xeloda (capecitabine) Chemotherapy 10/8/2021 Navelbine (vinorelbine) Chemotherapy 1/6/2022 Halaven (eribulin)
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Mar 31, 2021 11:45AM Karenfizedbo15 wrote:

Aaww Saulius, that’s rubbish re lymph node. And we do all get that ‘tired of it all’ feeling....it will pass though. Try and plan something nice from you all to look forward to, just something simple like a picnic by a river will do the trick for me!

Surgery 9/6/2007 Lymph node removal: Underarm/Axillary; Mastectomy: Right; Reconstruction (right): Latissimus dorsi flap Dx 4/2018, IDC, Right, Stage IV, metastasized to lungs, 1/17 nodes, ER+/PR+, HER2- Dx 2021, Stage IV, metastasized to bone Chemotherapy 2/3/2021 Xeloda (capecitabine) Targeted Therapy Ibrance (palbociclib) Hormonal Therapy Faslodex (fulvestrant) Hormonal Therapy Femara (letrozole)
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Mar 31, 2021 12:04PM Grannax2 wrote:

Congrats Dee. Negative brain MRI is a very good thing. Celebrate

I have my PET tomorrow and liver MRI on Saturday.

For those with low magnesium, what SE do you have with it? Is fatigue/ weakness especially in legs one? I’ve changed to 800 mg of magnesium Glycinate daily. No diarrhea. Hopefully it will help raise blood levels in spite of Eribulin.

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Mar 31, 2021 12:36PM Husband11 wrote:

Saulius, I am sorry to hear of the positive lymph node biopsy. Is there a spot treatment they can do such as surgery or radiation?

Concerned husband Dx 2008, Left, Stage IIIB, Grade 3, 7/14 nodes, ER+/PR+, HER2- Dx 5/2016, Stage IV, metastasized to liver, ER+/PR+, HER2- Chemotherapy Xeloda (capecitabine) Targeted Therapy Ibrance (palbociclib) Chemotherapy Hormonal Therapy Femara (letrozole)
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Mar 31, 2021 12:38PM NicoleRod wrote:

Saulius so so sorry :(. What is next to treat that?

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 **TNBC AUG 2021 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 4/29/2019 Surgery Chemotherapy Doxil (doxorubicin) Chemotherapy Xeloda (capecitabine) Radiation Therapy Surgery Mastectomy: Left, Right
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Mar 31, 2021 01:38PM moth wrote:

Saulius, ugh, sorry to hear that. Fingers crossed hard for excellent next steps.

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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Mar 31, 2021 01:59PM Elderberry wrote:

Saulius: Oh no! I am so terribly sorry. I hope it is only there and a PET or CT will show all clear everywhere else. The emotional aspects of this is so draining. Holding you, your wife and little boy in my heart. You have been such a support for us!!

LFF and KBL: I had calcific tendinopathy in my shoulder. I could not raise my arm up at all. Pulling a sweater on or off was torture. I was tipped off by my boss (a doctor specializing in virology/epidemiology who had had the same problem) about radial shock wave therapy. It was like a miracle. I went from keeping my hand in the pocket of a fleecy vest to support my arm to being able to swing my arm up and down after one treatment. After a few more, I was without pain and had full mobility. PT and all that other stuff did sweet F all. It is based on the same techniques used to break up kidney stones except you don' t have to be in a bath. My Extended Health benefits covered a good portion of it but I would have paid twice or thrice the full price just for the relief I got. Go Google it and then see where you can get it.

De Novo - this isn't a "brave battle" - it is a "furious struggle" Dx 3/6/2019, IDC, Left, 5cm, Stage IV, metastasized to liver, HER2+ Targeted Therapy Herceptin (trastuzumab) Chemotherapy Taxol (paclitaxel) Targeted Therapy Perjeta (pertuzumab)
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Mar 31, 2021 02:09PM BSandra wrote:

Uh, thank you so much for all of your support. CT (yep, not PET) should be clean, except for that lymph node or a few others (they see 4 other very small ones < 2 mm). Our ultrasound guy last week was very confident and said "I know you, I follow you for years, relax, do not panic, everything will be fine". But we panicked. Actually, for the first time I was angry. We'll meet with our immunologist tomorrow and with the surgeon on Friday to discuss what can be done next. CT is on Tuesday, so results by end of next week. I am a bit frustrated that these lymph nodes are in level II and III, so surgery is more extensive and possible lymphedema in the future is no fun but gut tells me these are same HER2 treatment resistant clones that made the first local relapse. Biopsy again showed ER-/PR-/HER2+++. We have to calm down, listen to all your advices and fix all of this somehow asap as we do not like cancerous lymph nodes, even if they are tiny:)P Please, let us all hold on and cherish each other - this thread is amazing. I'll come back here as soon as I have any news. 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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Mar 31, 2021 02:53PM candy-678 wrote:

ShetlandPony- You would be proud of me. I went online and set up an account with Guardant. Called them. Report released to my MO today. Normally sent to patient 16 days after sent to doctor. They will push to me tomorrow if I call and ask them to. So tomorrow I should have report in hand. Hugs.

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 8/1/2017 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) Hormonal Therapy 9/4/2021 Zoladex (goserelin) Targeted Therapy 9/4/2021 Lynparza
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Mar 31, 2021 03:38PM S3K5 wrote:

Saulius, sorry to hear about the positive lymph node. Hopefully the scan will show all clear in other places.

Nicole, sorry about your pain. I started having this kind of stomach pain with my first round of dose dense chemo 12 years ago and later it re-surfaced when I started IV chemo for liver mets. My GI doctor did the endoscopy and found ulcer in my stomach lining. Now I take Dexilant 2x/day plus pepcid ((https://www.dexilant.com/). This has really helped. I used to take Protonix and a lot of other anti-acid medications, which really didn't help much. Hope your GI dr prescribes something for your pain relief. You have been going through so much.

Dee, great news about the brain scan!

I had a PET scan and MRI of liver yesterday. Dr called me today and told me that the scan looks good and the mets are stable. I will be starting the anti-androgen tabs tonight. Don't know what to expect in terms of side effects (fatigue seems to be #1 on the list).

Talking to the IR tomorrow and will find out about the local liver treatment plan. I am nervous about the Y-90 procedure but this is the only thing that will reduce my liver mets. Systemic therapies have been successful in keeping my mets stable but did not decrease the size of the lesions.

S3K5 Dx 3/24/2008, IDC, Right, 3cm, Stage IIIA, Grade 2, 5/10 nodes, ER+/PR+, HER2- (FISH) Chemotherapy 4/14/2008 AC + T (Taxol) Targeted Therapy 5/29/2013 Ibrance (palbociclib) Chemotherapy 1/31/2019 Xeloda (capecitabine) Chemotherapy 4/4/2019 Taxol (paclitaxel) Chemotherapy 10/29/2019 CMF Targeted Therapy 7/6/2020 Piqray (alpelisib) Dx 10/19/2020, IDC, Right, Stage IV, metastasized to bone/liver, ER-/PR-, HER2- (IHC) Chemotherapy 12/9/2020 Doxil (doxorubicin) Hormonal Therapy Faslodex (fulvestrant) Hormonal Therapy Femara (letrozole) Chemotherapy Gemzar (gemcitabine)

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