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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 31, 2021 03:46PM HopeandGratitude wrote:

Cross-posting from the liver mets resection, ablation, Y90 thread.......

Well, I am scheduled for Y90 on April 22, mapping on April 12. If all goes well, I will have treatment only in the right anterior of my liver, which includes Segment 8 (1 tumor) and Segment 5 (1 tumor). A good way to preserve the rest of the liver from exposure for now. And a good way to take care of anything else that might be small but active in this area.

I had a tumor (liver) biopsy (ugh) and it came back ER pos 80%, PR pos 30% and Her2 neg (I assume that's by FISH). I haven't gotten the path report addenda yet but my MO told me. My original tumors that are still quiet were ER pos (90%), PR neg (0%) and Her2 neg by ISH and low by IHC. So why is verzenio holding the 8 of them in check while 2 new tumors appear? I realize it could be any number of mutations, but I am not sure it's worth further testing (ie Foundation 1) at this time since we plan on zapping those 2 new ones and keeping me on verzenio for now. Anyone think differently?? God willing, the rest of them stay quiet!! And maybe no new ones for awhile. 🙏

My fear, of course, is that Verzenio stops working and those 8 become active again. These are the thoughts that bring me nightmares.

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 05:47PM NicoleRod wrote:

S3K5....I wonder if I could stay on verzenio if I had a ulcer type med? The prilosec and Protonix...did/doing nothing. Im gonna message my MO and GI

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 06:08PM Husband11 wrote:

Nicole, have you had an endoscopy of your stomach to rule out an ulcer? Blood test for the bacteria suspected in causing stomach ulcers?

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 06:22PM macbookair2018 wrote:

hi all,

haven't posted much but i've got to ask some of you knowledgeable people about what could be going on. my mom presented with a 3cm liver met after 2.5 years of remission (original diagnosis was stage iv but only met was a tiny one to the spine, ER-/PR-/HER2+, and she did TCHP chemo and got a full response). they confirmed the same pathology for this met but tried kadcyla, it grew to 6cm. tried enhertu and now it's grown to almost 9cm!!! this tumor fricken tripled in size in only 3 months. that's freaking scary.

we're a little skeptic over the oncologist and if the HER2+ diagnosis of the liver met was even correct. did they get the pathology wrong? what else could've caused both these treatments to fail so horribly? should i find her a new oncologist?

she's going to do radiation now but it seems like there's not much chances. this is her only met but it's huge and unresponsive to HER2+ targeted therapies, and is growing fast. do you think her current oncologist is capable of continuing to treat her...

help :(

Dx 4/2018, IDC, Left, Stage IV, metastasized to bone, ER-/PR-, HER2+ Dx 12/2020, 6cm+, Stage IV, metastasized to liver, ER-/PR-, HER2+ Dx 5/2021, IDC, 5cm, Stage IV, metastasized to lungs, PR-, HER2+ (FISH) Radiation Therapy External: Liver Radiation Therapy Targeted Therapy Enhertu (fam-trastuzumab deruxtecan-nxki) Chemotherapy Carboplatin (Paraplatin), Taxotere (docetaxel) Targeted Therapy Herceptin (trastuzumab) Surgery Mastectomy: Left Radiation Therapy External: Bone Targeted Therapy Kadcyla (T-DM1, ado-trastuzumab) Chemotherapy Doxil (doxorubicin)
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Mar 31, 2021 06:34PM Husband11 wrote:

macbookair2018, very sorry to hear about this. There are ablation therapies for tumors of the liver, such a cryoablation, heat, and other spot treatments that can target just the tumor. Also, a number of women have had Y90 treatment for a small number of tumors.

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 07:08PM macbookair2018 wrote:

hi husband, yes we have been looking into that! it's frustrating that at 3cm we could have done ablation or y90 but a few months later its at 9cm and it's no longer an option :/ frustrating that the doc made these calls and his treatment plans failed

Dx 4/2018, IDC, Left, Stage IV, metastasized to bone, ER-/PR-, HER2+ Dx 12/2020, 6cm+, Stage IV, metastasized to liver, ER-/PR-, HER2+ Dx 5/2021, IDC, 5cm, Stage IV, metastasized to lungs, PR-, HER2+ (FISH) Radiation Therapy External: Liver Radiation Therapy Targeted Therapy Enhertu (fam-trastuzumab deruxtecan-nxki) Chemotherapy Carboplatin (Paraplatin), Taxotere (docetaxel) Targeted Therapy Herceptin (trastuzumab) Surgery Mastectomy: Left Radiation Therapy External: Bone Targeted Therapy Kadcyla (T-DM1, ado-trastuzumab) Chemotherapy Doxil (doxorubicin)
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Mar 31, 2021 07:08PM - edited Mar 31, 2021 07:09PM by moth

macbookair, have you yourself seen the pathology report for the liver lesion? I'd want to get a copy to read it.
If you have tissue samples from that biopsy, if your insurance will cover it or yu can pay for it, then you can also get a genomics test like Foundation One or Caris & see whether there are any targetable mutations such as P13k

Or perhaps she might need a chemo again to knock this down if the radiation doesn't work? Unfortunately, tumors can develop resistance to the treatments, including to the her2 targetted treatments.

A 2nd opinion is always a good idea too if you're not feeling 100% confident in your team. I think ultimately we need to really trust our oncologists.

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 07:16PM macbookair2018 wrote:

moth, thanks for the insight. i have not seen the report. she got normal genetic testing done after her dx since she was only 46 at the time and no mutations came up so i don't think the tumor would have any either. i think you're right, maybe targeting HER2 won't work anymore, and that's really scary because there might not be another drug she can stay on long-term.. she really doesn't want to do chemo again, her morale is low and she's living alone now. but even if radiation works i'm fearful she won't have a systemic treatment to stay on

Dx 4/2018, IDC, Left, Stage IV, metastasized to bone, ER-/PR-, HER2+ Dx 12/2020, 6cm+, Stage IV, metastasized to liver, ER-/PR-, HER2+ Dx 5/2021, IDC, 5cm, Stage IV, metastasized to lungs, PR-, HER2+ (FISH) Radiation Therapy External: Liver Radiation Therapy Targeted Therapy Enhertu (fam-trastuzumab deruxtecan-nxki) Chemotherapy Carboplatin (Paraplatin), Taxotere (docetaxel) Targeted Therapy Herceptin (trastuzumab) Surgery Mastectomy: Left Radiation Therapy External: Bone Targeted Therapy Kadcyla (T-DM1, ado-trastuzumab) Chemotherapy Doxil (doxorubicin)
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Mar 31, 2021 07:26PM NicoleRod wrote:

Husband..I had 2 endoscopy when I was hospitalized for the severe stomach pain in jan and again in Feb....all was good no ulcer...just Acid issues...

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 07:29PM moth wrote:

I just want to clarify, the genomic/next generation sequencing of the tumor is different than the genetic testing of the person. You can have different mutations in the tumor than the person carries and it can sometimes open new avenues of treatment. Not often, so it's a bit of a long shot - but still, it's a chance.

Also, just FYI, there is an oral chemo called Xeloda/capecitabine which doesn't cause hair loss. Many of the people here are on it .It's not a picnic & has its own weird side effects but it's often an intermediate step to IV chemo so maybe something she might consider & if it works it would be a good thing maybe? But ultimately, we all have to make decisions about continuing with treatment or not. The only way to really buy time is through treatment...and they're not all horrific. I'm on IV chemo for a year continuously and right now I'm feeling pretty well, doing Zumba 3x/week, going for walks with my dog daily, driving etc. With the right dose and the right meds for side effects, life can be pretty good. I hope you can read her this & give her some different perspective on how things can be

best wishes!

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 07:34PM macbookair2018 wrote:

first of all i'm so happy for you!! this is exactly the perspective i'm hoping to give her and i'll definitely show her this. i'm young and i want her to stay alive for me but more importantly herself. just show her that it's worth living and going through treatments you know?

and i'll definitlely keep the sequencing in mind if we are running low on options! i will have her look into xeloda next

Dx 4/2018, IDC, Left, Stage IV, metastasized to bone, ER-/PR-, HER2+ Dx 12/2020, 6cm+, Stage IV, metastasized to liver, ER-/PR-, HER2+ Dx 5/2021, IDC, 5cm, Stage IV, metastasized to lungs, PR-, HER2+ (FISH) Radiation Therapy External: Liver Radiation Therapy Targeted Therapy Enhertu (fam-trastuzumab deruxtecan-nxki) Chemotherapy Carboplatin (Paraplatin), Taxotere (docetaxel) Targeted Therapy Herceptin (trastuzumab) Surgery Mastectomy: Left Radiation Therapy External: Bone Targeted Therapy Kadcyla (T-DM1, ado-trastuzumab) Chemotherapy Doxil (doxorubicin)
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Mar 31, 2021 09:51PM S3K5 wrote:

Nicole, if the endoscopy showed all clear (no ulcer) then staying on Verzenio should be okay. Verzenio is comparatively tolerable than many other oral regimens. If this keeps you stable, then maybe all you need is something to control the acid problem? Hope your GI doctor prescribes something that works for you.


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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Apr 1, 2021 04:30AM KBL wrote:

Elderberry, I’ll look that up. Thank you.

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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Apr 1, 2021 08:17AM NicoleRod wrote:

S3K5....Ummmm so the pain I was experiencing was like a 7 -8 which to me is high. Unless they give something that works wonders I cannot go back on that drug. :(. The protonix did NOTHING.... Pepto was apparently possibly making it worse...only Tums helped a little and that was only after being off it for 3 days. I did message MO and ask if she could talk to GI and see if they could give the medicine you are on that maybe if that could help, and then if so maybe re-try Verzenio.


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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Apr 1, 2021 01:10PM Nola70115 wrote:

Macbookair2 she might be able to get a second opinion on the radiology AND from another oncologist at a larger cancer center, just to make sure there's nothing the docs at your hospital have missed. I'm doing that at MD Anderson in Houston but so far I've done everything by phone and virtual. I don't have to actually go there unless there is a test or a procedure my doctors here can't do. Insurance (BCBS) has given me no grief about approving the second opinions. They might just confirm what I already know, but that's better than wondering.

Age 40 at first diagnosis, 47 now. I've got an autistic teenager and a toddler to live for. See my 2014 blog at snarkforthecure.wordpress.com. Dx 4/15/2014, IDC, Left, 2cm, Stage IIA, Grade 2, 0/3 nodes, ER+/PR+, HER2- (FISH) Surgery 5/14/2014 Lymph node removal: Left; Mastectomy: Left, Right; Reconstruction (left); Reconstruction (right) Chemotherapy 6/19/2014 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Hormonal Therapy 8/31/2014 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Dx 2/8/2021, IDC, Left, <1cm, Grade 2, ER+/PR+, HER2- (FISH) Dx 2/22/2021, IDC, Left, Stage IV, metastasized to liver, ER+/PR+, HER2- (FISH)
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Apr 1, 2021 01:17PM Husband11 wrote:

Nicole, I wonder if the Verzenio being in your stomach is causing the pain - in which case coating your stomach to isolate it from the drug would help, or if the stomach pain is a result of the verzenio being in your body - much like the way it lowers blood counts, and that reacting with your body to cause stomach pain? Can you consult with a pharmacist? Maybe they would have some idea of how it is causing the pain, and what strategy might work best? Can you contact Eli Lilly?

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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Apr 1, 2021 01:54PM candy-678 wrote:

Ok, I got my Guardant 360 results. Does anyone know about how to read the report???

From what I can tell, Negative. I mean no help.

Says.... "No reportable tumor-related somatic alterations were detected in this patient's sample. This may be due to either absence of reportable mutations in the tumor itself or low levels of ctDNA.".

So, what next? Not showing ESR mutation, so AI still working? Not showing Rb mutation, so CDK still working? So why progression? And where do I go from here?

Wonder how much I will owe for this test, and no more information to work with.

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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Apr 1, 2021 02:09PM - edited Apr 1, 2021 02:24PM by NicoleRod

This Post was deleted by NicoleRod.
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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Apr 1, 2021 02:23PM Sadiesservant wrote:

Hi Nicole,

From what I've read from others and my own experience, diarrhea yes and cramps definitely. I had severe cramps associated with the big D events. However, stomach pain? I think you are the only one I know that has reported this. Wish I could shed some light on why you had this issue.

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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Apr 1, 2021 02:28PM NicoleRod wrote:

Husband11 I always took it with food and even put every pill in a veggie cap to swallow.... When I called my MO in pain last week and said I was gonna stop the med she said Verzenio is known to cause GI issues...so I assumed that meant could be diarrhea, stomach pain, cramps etc...?? I am on with Eli lilly they said that stomach acid pain is not a documented side effect and then they transferred me to the nursing line and they said this is an adverse effect and have to document it....

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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Apr 1, 2021 02:42PM - edited Apr 1, 2021 02:43PM by Husband11

I should have know you would be working on it from every angle. The capsule sounded like a good try, to delay the opening and dispersal. Plus the combining with food should have helped. Must be so frustrating and disappointing for you. I wouldn't suggest trying it as a suppository, because it might need to pass through the liver as it does from the small intestine / stomach route. Plus who knows what that would do to the effective dosage.

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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Apr 1, 2021 02:47PM NicoleRod wrote:

Well I will tell ya this Husband.....I am debating going on the Afinitor right now...out of almost 50 women I have spoken to on FB...maybe 4 didn't have lung issues and need multiple pleural enfusions...... I have never been scared of a drug the way I am of this.... I just wrote to my MO about it...she told me that she put a message into the GI doc about maybe getting the Dexilant (to take with Verzenio) that S3K5 took for the ulcer I looked up that drug and it says it works for acid reflux too...so maybe if I get that and take tums from the START of the medication I can tolerate it?

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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Apr 1, 2021 02:56PM macbookair2018 wrote:

nola, i totally will look into that. how were you able to get a second opinion/who did you contact?

dee, yeah it sucks having a tumor grow so quickly. they tried kadcyla and enhertu and it grew by 3cm every month on both treatments. i feel like i have no answers. i'll look into a second opinion but i'm her only advocate and i'm young and just confused on how to do/manage everything.

Dx 4/2018, IDC, Left, Stage IV, metastasized to bone, ER-/PR-, HER2+ Dx 12/2020, 6cm+, Stage IV, metastasized to liver, ER-/PR-, HER2+ Dx 5/2021, IDC, 5cm, Stage IV, metastasized to lungs, PR-, HER2+ (FISH) Radiation Therapy External: Liver Radiation Therapy Targeted Therapy Enhertu (fam-trastuzumab deruxtecan-nxki) Chemotherapy Carboplatin (Paraplatin), Taxotere (docetaxel) Targeted Therapy Herceptin (trastuzumab) Surgery Mastectomy: Left Radiation Therapy External: Bone Targeted Therapy Kadcyla (T-DM1, ado-trastuzumab) Chemotherapy Doxil (doxorubicin)
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Apr 1, 2021 03:31PM NicoleRod wrote:

has anyone heard of TUDCA?? I just spoke to someone on FB that was going into hospice..and did Caboplatin> spelling and TUDCA and is NEAD now.....

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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Apr 1, 2021 03:33PM Sadiesservant wrote:

Husband, just wanted to thank you for pointing out the ctDNA testing opportunity with Canexia. As I suspected, their website has changed, removing the deadline of March 31st for the testing. I guess they did not reach the target number of patients.

I reached out to my MO who is on board with getting the testing done. Biopsies have always presented a problem for me as, until recently, I have not had solid tumors to easily test (pleural mets, some potential involvement in the capsule of the liver) and bones. While I now have lesions in my liver, he is hesitant given possible complications (and also there are likely challenges scheduling something like this with COVID continuing to rage). I've sent the links to the requisition so hopefully by next week I can have the test done.

Nicole, I understand your hesitance with Affinitor as it was one of the drugs my MO considered for me. I did express some concern with the potential lung issues given that one of my lungs is compromised from a large pleural effusion. However, to clarify and I hope others will weigh in, it can cause interstitial lung disease (the CDK inhibitors can also cause ILD). I don't believe this manifests as pleural effusion (related to the cancer) - it's more of a scarring/fibrosis that develops which can be monitored and caught before it causes significant damage. I have known several on this site that have taken it without incidence. It's always tricky to tell from stories we read but often those with these significant adverse effects have underlying issues such as asthma, and/or may be older. Not trying to convince you one way or the other but I think it's worth a chat with you MO to better understand where she pegs your risk in this case. Hope this is helpful.

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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Apr 1, 2021 03:38PM NicoleRod wrote:

Sadie..thank you so much for you imput I know you have talked with me about this already so I really appreciate you doing so again. The people I spoke to on FB said they had no underlying issue prior to this drug :(. I am however wondering if a lower dose than 10mg would lessen the risk?? I say that bc my MO was going to start at 7.5.....

So does that IDL go away or is a permenant condition?

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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Apr 1, 2021 05:19PM - edited Apr 1, 2021 05:20PM by NicoleRod

That is why my doctor thinks liquid biopsies are not very good unless you have high tumor burden...she prefers tissue.

Sadie...my MO wrote back she said :

"I have had one patient develop interstitial pneumonitis on Afinitor, it is < 5% likely. That being said I also had one patient develop it on verzenio as well and on ibrance. So they are rare but possible."


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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Apr 1, 2021 06:45PM NicoleRod wrote:

Dee and Sadie....looks like my MO called in the lowest dose of Afinitor... 2.5 mg....

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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Apr 1, 2021 07:00PM Sadiesservant wrote:

Nicole. Good news on the dosage. I am not sure about the pulmonary issues. I know the damage can be permanent and quite severe but it is my understanding that they watch closely for this (any changes will show up on the scans) and stop the treatment immediately if it is suspected. That way the damage can be undone or stopped before it becomes permanent.

Totally hear you on the liquid biopsies but baby steps. My MO is not a complete fan of genomic testing as, in his experience, he has not found them to identify many actionable mutations. But given that this is free, easy (just blood although judging by my ordeal for my CT accessing veins is starting to become an issue - four tries! ouch!) and still relatively early in terms of the number of treatments I've been on, I'll take it.

More good news to share. I was a bit worried when I hadn't heard back from my MO on the CT scan. He sent me a note this afternoon. Stable except for the liver mets which have reduced in size. Whew!! That's a relief. Now I can go into the long weekend more relaxed. Of course, it means SABR is off the table, at least for now but I'll take this win as well.

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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Apr 1, 2021 07:21PM candy-678 wrote:

Woohoo Sadie on a stable scan. Enjoy your weekend.

I meet with my MO on April 19 to discuss liver tumor board recommendations and Guardant results. I will ask about a tissue biopsy. But the MO nurse said cannot biopsy "unless over 1cm and yours is just over that"--- but largest of mine is 1.6cm. I am going to see if we can biopsy.

Just frustrating that the Guardant test didn't give more information.

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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