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Topic: HER2- with ERBB2 mutation

Forum: Stage IV/Metastatic Breast Cancer ONLY —

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Intro medically reviewed by: Brian Wojciechowski, M.D.
Last review date: November 22, 2020

Posted on: May 7, 2019 09:44AM

jobur wrote:

I am now and have always been HER2-, but Foundation 1 testing of my liver tumor found it has the ERBB2 mutation. I have been trying to research this but still don't quite understand the difference, or if there is a difference. My mo has mentioned H&P as next tx when A/A fails. TMs took a jump last month and I have PET later in May, so that may be soon. 

Hoping some of the brighter bulbs here (and there are so many!) can shed some light on this for me. It may be that it is just too far over my head in terms of education/knowledge, but hoping someone can post a short "HER2 and Genetic Mutations for Dummies" response. 

Thank you!

"What do you know, and what do you just believe?" Linda Hogan "Power" Surgery 6/30/2014 Lumpectomy: Left Dx 8/1/2014, IDC, Left, 1cm, Stage IV, metastasized to bone, Grade 2, 4/7 nodes, mets, ER+/PR+, HER2- Hormonal Therapy 8/3/2014 Arimidex (anastrozole) Hormonal Therapy 4/29/2015 Faslodex (fulvestrant) Targeted Therapy 8/16/2015 Ibrance (palbociclib) Dx 11/20/2018, IDC, 1cm, Stage IV, metastasized to liver, ER+/PR-, HER2- (FISH) Hormonal Therapy 12/4/2018 Aromasin (exemestane) Targeted Therapy 1/1/2019 Afinitor (everolimus) Hormonal Therapy 7/15/2019 Faslodex (fulvestrant) Targeted Therapy 7/16/2019 Piqray (alpelisib) Targeted Therapy 1/11/2021 Nerlynx
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May 7, 2019 10:31AM ShetlandPony wrote:

Hi, Jobur. My liquid biopsy showed an ERBB2 mutation. I will gather some info for you...

2011 Stage I ILC 1.5cm grade1 ITCs sn Lumpectomy,radiation,tamoxifen. 2014 Stage IV ILC mets breast,liver. TaxolNEAD. Ibrance+letrozole 2yrs. Fas+afinitor nope. XelodaNEAD 2yrs. Eribulin,Doxil nope. SUMMIT FaslodexHerceptinNeratinib for Her2mut NEAD
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May 7, 2019 10:41AM - edited May 7, 2019 12:21PM by Moderators

This Post was deleted by Moderators.
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May 7, 2019 10:45AM - edited May 7, 2019 10:47AM by LoriCA

The short answer according to my research is that HER2+ has ERBB2 amplication while some HER2- has ERBB2 mutation. Mutation is uncommon in HER2+. About 21% of HER2- have ERBB2 mutations that aren't detected by IHC or FISH. Studies have been inconclusive if HER2-targeted drugs are effective on the mutations, sometimes they are and sometimes they aren't. The largest recent study I read recommended against recommending HER2-targeted drugs for HER2- with ERBB2 mutation because of the high cost of the drugs with insufficient clinical evidence, but it seems that oncologists are still recommending it because a few people have mentioned it lately. I haven't found a more recent study that validates a reason for trying them, but maybe I missed something.

IBC Stage IV de novo - mets throughout skeleton (bones & now bone marrow), liver, dozens of distant nodes, chest wall/pec muscle, skin, tumor in brachial nerves, thyroid, polycythemia from bone marrow involvement Dx 9/8/2017, IBC, Right, Stage IV, metastasized to bone/liver/other, Grade 3, ER+/PR-, HER2+ (IHC) Chemotherapy 9/26/2017 Taxol (paclitaxel) Targeted Therapy 2/6/2018 Perjeta (pertuzumab) Targeted Therapy 2/6/2018 Herceptin (trastuzumab) Chemotherapy 11/26/2018 Taxol (paclitaxel) Radiation Therapy 1/30/2019 Whole-breast: Breast, Lymph nodes, Chest wall Targeted Therapy Enhertu (fam-trastuzumab deruxtecan-nxki) Targeted Therapy Kadcyla (T-DM1, ado-trastuzumab)
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May 7, 2019 11:24AM - edited May 7, 2019 11:35AM by ShetlandPony

Mods, perhaps you would edit or delete your above post since it may confuse matters? As Lori says, Her2 amplification is different from Her2 mutation. ERBB2 is another name for Her2. Her2 amplification is what we call Her2 positive on the standard pathology report, and Herceptin is the usual drug. Her2 mutation does not show up with pathology testing including FISH or CISH. Rather, it is found with genomic testing of the tumor, by Foundation One, Caris, Guardant etc. This may be done with a tumor sample or with a blood test (liquid biopsy). Rather unscientifically, I think of amplification as something like too much Her2, and mutation as something like the normal amount but weirdly shaped. Anyway, what I learned is that while the usual Herceptin may not work for a Her2/ERBB2 mutation, another Her2 drug called neratinib (Nerlynx) may indeed work. (There may be other drugs as well.) On my liquid biopsy report, the company suggested that drug and the footnotes referenced the papers to support the recommendation. It is true that there is no guarantee, but of course we know that no cancer drug is guaranteed to work for everyone. Jobur, do you have a copy of your full F1 report, and is there a therapy suggestion next to the ERBB2 mutation? Some ERBB2 mutations are considered to be “activating" meaning they could be driving the cancer, while some are considered to be not activating. Interestingly, my mutation was not one that my very good onc knew to be activating, but I called the company to ask if so, why the suggestion of neratinib. They said they believed it to be activating. They actually called my onc, and after their discussion my onc says neratinib is in my future. So, Jobur, please make sure your onc is up on the latest, or get an opinion from one who is. I’m not sure H&P is right, but of course I am not an oncologist. Now I will get some citations of research...

2011 Stage I ILC 1.5cm grade1 ITCs sn Lumpectomy,radiation,tamoxifen. 2014 Stage IV ILC mets breast,liver. TaxolNEAD. Ibrance+letrozole 2yrs. Fas+afinitor nope. XelodaNEAD 2yrs. Eribulin,Doxil nope. SUMMIT FaslodexHerceptinNeratinib for Her2mut NEAD
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May 7, 2019 11:32AM - edited May 7, 2019 11:41AM by ShetlandPony

Some of the literature is cited below. I was researching this from an ILC viewpoint. The ERBB2 mutations are more common in ILC than IDC. But a gene is a gene, and we are moving toward treating cancer according to its unique genomic characteristics. I do not have access to the rest of my files right now, but if I can get them, I will see if there is more to post.


Relapsed Classic E-Cadherin (CDH1)-Mutated Invasive Lobular Breast Cancer Shows a High Frequency of HER2 (ERBB2) Gene Mutations

http://clincancerres.aacrjournals.org/content/19/1...

Nonamplification ERBB2 genomic alterations in 5605 cases of recurrent and metastatic breast cancer: An emerging opportunity for anti-HER2 targeted therapies

https://onlinelibrary.wiley.com/doi/pdf/10.1002/cn...

A clinical case of invasive lobular breast carcinoma with ERBB2 and CDH1 mutations presenting a dramatic response to anti-HER2-directed therapy

https://academic.oup.com/annonc/article/27/1/199/2...


(Lori, if you can post a citation for the paper you mentioned, I would be interested in reading it.)

2011 Stage I ILC 1.5cm grade1 ITCs sn Lumpectomy,radiation,tamoxifen. 2014 Stage IV ILC mets breast,liver. TaxolNEAD. Ibrance+letrozole 2yrs. Fas+afinitor nope. XelodaNEAD 2yrs. Eribulin,Doxil nope. SUMMIT FaslodexHerceptinNeratinib for Her2mut NEAD
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May 7, 2019 12:20PM - edited May 7, 2019 12:22PM by Moderators

LoriCA and shetlandpony,

Thank you both so much for your insight on this! We appreciate your sharing this information with us, and have deleted our post, as it seems it is not helpful. We will also take this to our editorial team to see if we can add some information about ERBB2 amplification vs. mutation to our main site so we can be a helpful resource to those managing this diagnosis.

Again, thank you -- we are grateful for your experience and knowledge!

--The Mods

To send a Private Message to the Mods: community.breastcancer.org/mem...
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May 7, 2019 12:43PM ShetlandPony wrote:

Thank you, Mods. That’s a great idea to work on adding some info on this to the BCO pages. I always appreciate your willingness to help.

2011 Stage I ILC 1.5cm grade1 ITCs sn Lumpectomy,radiation,tamoxifen. 2014 Stage IV ILC mets breast,liver. TaxolNEAD. Ibrance+letrozole 2yrs. Fas+afinitor nope. XelodaNEAD 2yrs. Eribulin,Doxil nope. SUMMIT FaslodexHerceptinNeratinib for Her2mut NEAD
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May 7, 2019 05:01PM LoriCA wrote:

ShetlandPony I'm having a hard time finding the exact article I had taken most of my notes from, but I found several articles citing the results of NSABP B-47 as evidence that Herceptin only works when HER2 is amplified,although I don't see that the study specifically references mutations -

https://www.ascopost.com/issues/january-25-2018/nsabp-b-47-no-benefit-for-adjuvant-trastuzumab-in-her2-low-breast-cancer/

Here's another article that is specific to mutations that says the same thing, Herceptin doesn't work without amplification - ""In these patients, drugs such as herceptin, for example, don't get a response, because you don't have HER2 being amplified."

https://www.targetedonc.com/conference/asco-breast-2016/novel-tki-examined-in-metastatic-breast-cancer-patients-with-her2-mutation


There are a few trials with other HER2-targeted drugs, and I read that Lapatinib is effective if HER2 is both amplified and mutated.

Kadcyla was found to not be effective:

Anti-HER2 therapy efficacy in HER2-negative metastatic breast cancer with HER2-amplified circulating tumor cells: results of the CirCe T-DM1 trial

"Although one confirmed response was observed in our study, the overall low response rate to specific anti-HER2 therapy does not support the clinical utility of such strategy in that setting."

https://oncologypro.esmo.org/Meeting-Resources/ESMO-2017-Congress/Anti-HER2-therapy-efficacy-in-HER2-negative-metastatic-breast-cancer-with-HER2-amplified-circulating-tumor-cells-results-of-the-CirCe-T-DM1-trial


Neratinib is in trial based on this report - https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4701428/

This is one of the trials - In Phase II 14 of the 16 patients dropped out of the study (13 for "PD", I don't know what that is), and enrollment was terminated early due to ethical concerns. Phase III will add fulvestrant to neratinib since most of the women were ER+. https://clinicaltrials.gov/ct2/show/NCT01670877

Here's the Phase II summary - https://ascopubs.org/doi/abs/10.1200/JCO.2016.34.15_suppl.516


Everything I've read said it's all still experimental and nothing is approved for standard of care, so I'm surprised if insurance companies will pay for HER2-targeted drugs until clinical benefit is proven because they are pricey. I'm interested in hearing what drug(s) Foundation is recommending for mutations too. I've read a few highly-scientific papers that talk about 17+ different types of mutations and that certain drugs may only be effective for specific mutations, but my eyes started glazing over. Apparently only 2% have ERBB2 mutation, and I assume it's hard to trial with such low numbers. Quite a few of the studies I've come across were not specific to breast cancer, but included several different types of cancer that have been found to have ERBB2 mutations.


Activating HER2 mutations as emerging targets in multiple solid cancers

https://esmoopen.bmj.com/content/2/5/e000279



IBC Stage IV de novo - mets throughout skeleton (bones & now bone marrow), liver, dozens of distant nodes, chest wall/pec muscle, skin, tumor in brachial nerves, thyroid, polycythemia from bone marrow involvement Dx 9/8/2017, IBC, Right, Stage IV, metastasized to bone/liver/other, Grade 3, ER+/PR-, HER2+ (IHC) Chemotherapy 9/26/2017 Taxol (paclitaxel) Targeted Therapy 2/6/2018 Perjeta (pertuzumab) Targeted Therapy 2/6/2018 Herceptin (trastuzumab) Chemotherapy 11/26/2018 Taxol (paclitaxel) Radiation Therapy 1/30/2019 Whole-breast: Breast, Lymph nodes, Chest wall Targeted Therapy Enhertu (fam-trastuzumab deruxtecan-nxki) Targeted Therapy Kadcyla (T-DM1, ado-trastuzumab)
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May 7, 2019 05:53PM ShetlandPony wrote:

Thanks very much, Lori, for the links. A quick review of these papers seems to confirm my understanding that Jobur and her onc may wish to consider neratinib for a Her2 mutation, and not Herceptin which only seems to work for Her2 amplification. (It appears neratinib can be used for both Her2 mutated and Her2 amplified cancer.) I am guessing that the earlier trial dropout for “PD” refers to diarrhea. The docs have now learned more about dosing and using anti-diarrhea meds at the start of treatment. See the Nerlynx thread here on BCO. As far as insurance, the trial for ER+ Her2 mutated seems to have generous qualification requirements, not too hard to get in, I hope. But my onc thinks getting compassionate use could succeed as well, and one can always ask the drug company to help. It’s worth pursuing this line, Jobur, in my opinion. Be sure to get a research-oriented onc on the case.

2011 Stage I ILC 1.5cm grade1 ITCs sn Lumpectomy,radiation,tamoxifen. 2014 Stage IV ILC mets breast,liver. TaxolNEAD. Ibrance+letrozole 2yrs. Fas+afinitor nope. XelodaNEAD 2yrs. Eribulin,Doxil nope. SUMMIT FaslodexHerceptinNeratinib for Her2mut NEAD
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May 7, 2019 06:25PM LoriCA wrote:

Ah, "Persistent Diarrhea"! I was banging my head into the wall trying to figure out what PD could be and I couldn't find anything relevant. I'm usually familiar with most of the terminology so it was really bugging me. It was stated as "13 for PD and 1 for AE", and since typically diarrhea bad enough to make someone leave a trial would be an Adverse Event, I couldn't make sense of it in light of the way they gave the numbers. Whenever that happens I like to blame it on chemo brain, ;)

IBC Stage IV de novo - mets throughout skeleton (bones & now bone marrow), liver, dozens of distant nodes, chest wall/pec muscle, skin, tumor in brachial nerves, thyroid, polycythemia from bone marrow involvement Dx 9/8/2017, IBC, Right, Stage IV, metastasized to bone/liver/other, Grade 3, ER+/PR-, HER2+ (IHC) Chemotherapy 9/26/2017 Taxol (paclitaxel) Targeted Therapy 2/6/2018 Perjeta (pertuzumab) Targeted Therapy 2/6/2018 Herceptin (trastuzumab) Chemotherapy 11/26/2018 Taxol (paclitaxel) Radiation Therapy 1/30/2019 Whole-breast: Breast, Lymph nodes, Chest wall Targeted Therapy Enhertu (fam-trastuzumab deruxtecan-nxki) Targeted Therapy Kadcyla (T-DM1, ado-trastuzumab)
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May 7, 2019 07:05PM - edited May 7, 2019 07:06PM by ShetlandPony

Yeah, chemo brain strikes again. Remember Saturday Night Live's “Nobody expects ..." Nobody expects chemo brain! Sometimes I have no working memory available, and yet I know parts of me are still smart. Strange experience.

You know, jobur, a typical next treatment after going through the anti-estrogens paired with targeted therapies as you have, would be Xeloda. That is my current med and I like it. If/when there is progression it will be interesting to see if the percentage of Her2 mutated in the liquid biopsy is higher than before. If so, there is a good chance my onc and I will use neratinib.

2011 Stage I ILC 1.5cm grade1 ITCs sn Lumpectomy,radiation,tamoxifen. 2014 Stage IV ILC mets breast,liver. TaxolNEAD. Ibrance+letrozole 2yrs. Fas+afinitor nope. XelodaNEAD 2yrs. Eribulin,Doxil nope. SUMMIT FaslodexHerceptinNeratinib for Her2mut NEAD
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May 7, 2019 08:15PM Cure-ious wrote:

Shetland, it would be useful if they figured out what might trigger our ER-positive cancers to mutate to HER2+++ amplified, so we could just move over to the herceptins and all and get years on treatment that way. Seriously, I wonder if there is a combination protocol of some type that could push cells to turn up HER2 expression

Dx 10/2003, IDC, Stage IIB, ER+/PR+, HER2- Dx 7/2015, Stage IV, metastasized to bone, ER+/PR-, HER2-
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May 7, 2019 08:29PM ShetlandPony wrote:

I know what you mean, Cure-ious. I find myself oddly “jealous” when I hear of Her2+ patients who are near cured status on Herceptin. (But I am very happy for them!) I wonder if Her2 mutant cancer can respond similarly to a drug like neratinib. I like to think so. Woodylb went Her2+ when she was running out of treatments. Her onc was so happy.


2011 Stage I ILC 1.5cm grade1 ITCs sn Lumpectomy,radiation,tamoxifen. 2014 Stage IV ILC mets breast,liver. TaxolNEAD. Ibrance+letrozole 2yrs. Fas+afinitor nope. XelodaNEAD 2yrs. Eribulin,Doxil nope. SUMMIT FaslodexHerceptinNeratinib for Her2mut NEAD
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May 7, 2019 09:51PM LoriCA wrote:

If you're lucky you could get years on Herceptin, but as good as that drug is for so many, response is not a given. I'm one of the unlucky ones who was de novo resistant to Herceptin (and other treatments), which is why I've been doing so much research lately. Multiple biopsies confirm that it's strongly HER2+ and my F1 shows only ERBB2 amplification, no mutation, so on the surface you would think Herceptin would be the perfect drug for me. Unfortunately both IBC and Luminal B are highly prone to treatment resistance - chemo, radiation, targeted, hormonal. Then the HER2 amplification downregulates ER, so hormone therapy is even less likely to be effective, especially if one is only weakly ER+. As I've been learning, there are a LOT of factors that come into play.

IBC Stage IV de novo - mets throughout skeleton (bones & now bone marrow), liver, dozens of distant nodes, chest wall/pec muscle, skin, tumor in brachial nerves, thyroid, polycythemia from bone marrow involvement Dx 9/8/2017, IBC, Right, Stage IV, metastasized to bone/liver/other, Grade 3, ER+/PR-, HER2+ (IHC) Chemotherapy 9/26/2017 Taxol (paclitaxel) Targeted Therapy 2/6/2018 Perjeta (pertuzumab) Targeted Therapy 2/6/2018 Herceptin (trastuzumab) Chemotherapy 11/26/2018 Taxol (paclitaxel) Radiation Therapy 1/30/2019 Whole-breast: Breast, Lymph nodes, Chest wall Targeted Therapy Enhertu (fam-trastuzumab deruxtecan-nxki) Targeted Therapy Kadcyla (T-DM1, ado-trastuzumab)
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May 7, 2019 11:04PM JFL wrote:

With respect to insurance company coverage, there are federal and state laws about this - I learned this 4 years ago when I wrote my own appeal to get Ibrance approved by my insurance company before it was FDA approved for my indication (with Aromasin/Faslodex). Initially, the letter written by the social worker at the cancer center was denied. I wrote an appeal which was successfully approved. I waited for the day the trial results were posted for combining Ibrance with Faslodex, which the company had publicly disclosed in advance would happen on their earnings call for that quarter, and wrote the letter which my insurer approved permitting me to take Ibrance with Faslodex/Aromasin before it was FDA approved with Faslodex. I believe a medication's trial results have to be written up in three peer-reviewed, reputable medical journals. If so, then the insurance company is required to cover it. Puma has certainly published trial results of Nerlynx in ERBB2 mutant, non-amplified breast cancer over the last few years that have been written up at ASCO 2019, SABC 2018 and in various journals.

Chart your own course. Dx at 30. Dx with mets at 38 while pregnant - extensive liver & bone involvement. Currently on Enhertu & XGeva. ER+/PR+, HER2-low (IHC equivocal, +2/FISH negative). Y90 liver radioembolization in 2018. Dx 9/2006, IDC, Right, 1cm, Stage IIB, Grade 3, 1/16 nodes, ER+/PR+, HER2- (FISH) Surgery 9/22/2006 Mastectomy: Left, Right Chemotherapy 11/6/2006 Adriamycin (doxorubicin), Cytoxan (cyclophosphamide), Taxotere (docetaxel) Hormonal Therapy 3/15/2007 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Dx 12/2014, IDC, Stage IV, metastasized to bone/liver/other, Grade 3, ER+/PR-, HER2- Surgery 12/26/2014 Prophylactic ovary removal Hormonal Therapy 12/26/2014 Aromasin (exemestane), Faslodex (fulvestrant) Targeted Therapy 6/18/2015 Ibrance (palbociclib) Chemotherapy 3/10/2016 Xeloda (capecitabine) Hormonal Therapy 5/14/2017 Aromasin (exemestane) Targeted Therapy 5/14/2017 Afinitor (everolimus) Chemotherapy 8/18/2017 Abraxane (albumin-bound or nab-paclitaxel) Chemotherapy 3/23/2018 Doxil (doxorubicin) Chemotherapy 4/26/2019 Navelbine (vinorelbine) Hormonal Therapy 4/26/2019 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Chemotherapy 11/27/2019 Gemzar (gemcitabine) Hormonal Therapy 8/25/2020 Faslodex (fulvestrant) Targeted Therapy 8/25/2020 Piqray (alpelisib) Targeted Therapy 10/2/2020 Enhertu (fam-trastuzumab deruxtecan-nxki)
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May 8, 2019 10:22AM jobur wrote:

Shetland and LoriCA, thank you for all your research and for providing the many links above. I haven't read them all yet but it looks like rain today, so it will be a good day to do some reading. I had never heard of neratinib, sounds interesting and maybe an easy tx if big D can be controlled. Definitely a drug I will ask my mo about. Shetland, it's good to hear you like Xeloda and so happy to see it has gotten you to NEAD! Hope it lasts a good long time. LoriCA, I know the right drug for you is out there. Hope you find it soon!

JFL, Thank you too for your explanation of the insurance approval process. Oh what a tangled web!

Mods - It would be really helpful to have a section on the main site explaining genetic testing in general as well as how some of the more common mutations could advise tx choices. As Shetland said above, "treating cancer according to its unique genomic characteristics" is becoming a reality. And thank you, thank you, thank you for this website! I really don't know what I would do without it.

So far, my cancer and tx have been plain vanilla for ER+/HER2- and I thought my next tx would be Xeloda prior to the F1 genetic testing. Maybe that is still the way to go, but this may be a good time for a 2nd opinion. Or maybe a  clinical trial if any apply to my situation. 

Thank you again for taking the time to share all of your research. Our time is precious and I feel honored that you have shared yours with me.

"What do you know, and what do you just believe?" Linda Hogan "Power" Surgery 6/30/2014 Lumpectomy: Left Dx 8/1/2014, IDC, Left, 1cm, Stage IV, metastasized to bone, Grade 2, 4/7 nodes, mets, ER+/PR+, HER2- Hormonal Therapy 8/3/2014 Arimidex (anastrozole) Hormonal Therapy 4/29/2015 Faslodex (fulvestrant) Targeted Therapy 8/16/2015 Ibrance (palbociclib) Dx 11/20/2018, IDC, 1cm, Stage IV, metastasized to liver, ER+/PR-, HER2- (FISH) Hormonal Therapy 12/4/2018 Aromasin (exemestane) Targeted Therapy 1/1/2019 Afinitor (everolimus) Hormonal Therapy 7/15/2019 Faslodex (fulvestrant) Targeted Therapy 7/16/2019 Piqray (alpelisib) Targeted Therapy 1/11/2021 Nerlynx
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May 8, 2019 12:00PM LoriCA wrote:

Thanks jobur, I'm sure the right one is out there too, we just need to find it. Rads slowed it enough to buy me time to try another chemo. I'm still on H&P because it's been working well on my extensive skeletal mets, it just doesn't work anywhere else and the cancer keeps spreading quickly and popping up in new places. I was scared to death to not be on any systemic treatment for 5 months so I asked to stay on H&P while we figure things out. I'm getting new baseline scans this month, and then we're off to the races again. I'm hoping to add Xeloda next and avoid another IV chemo, or maybe switch to Kadcyla since that is Herceptin plus a chemo. I'm just so frustrated because other than a good response to my initial round of chemo, they haven't been able to get me stable since my DX.

I learned so much here when I was first diagnosed, happy to be able to return the favor in a small way.

For clarity sake since this stuff can get confusing, Foundation One/Claris/etc testing is genomic, not genetic. The way I read it explained, genetic testing is for inherited mutations like BRCA, genomic testing is for acquired mutations. I never had genetic testing done since there's nothing in my history that would suggest it could be of any use, although F1 did test for BRCA1 and BRCA2, and on my F1 report the findings are broken down into genomic (ERBB2 etc) and genetic (BRCA), as well as the biomarker findings (TMB and MS).

I hope that both of you please keep us updated on how things go as far as what treatment you decide on and how your insurance handles it. All of this is so new that I'm sure many others will benefit from your experience.

IBC Stage IV de novo - mets throughout skeleton (bones & now bone marrow), liver, dozens of distant nodes, chest wall/pec muscle, skin, tumor in brachial nerves, thyroid, polycythemia from bone marrow involvement Dx 9/8/2017, IBC, Right, Stage IV, metastasized to bone/liver/other, Grade 3, ER+/PR-, HER2+ (IHC) Chemotherapy 9/26/2017 Taxol (paclitaxel) Targeted Therapy 2/6/2018 Perjeta (pertuzumab) Targeted Therapy 2/6/2018 Herceptin (trastuzumab) Chemotherapy 11/26/2018 Taxol (paclitaxel) Radiation Therapy 1/30/2019 Whole-breast: Breast, Lymph nodes, Chest wall Targeted Therapy Enhertu (fam-trastuzumab deruxtecan-nxki) Targeted Therapy Kadcyla (T-DM1, ado-trastuzumab)
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May 19, 2019 06:35PM ShetlandPony wrote:

Lori, IBC is a bitch. I hope your research leads you to something new and effective!

Yes, it is important to make the distinction about genomic and genetic testing. Forgive me while I launch into splaining mode for anyone who may be reading along. When we talk about genetic testing, for example to see if a family with several cases of breast and ovarian cancer has a BRCA mutation at work, that mutation would be a germline mutation. A germline mutation is in all the cells of the body, both well-behaved cells and rogue cells (Cancer is our own cells gone wrong). This kind of testing is often based on family history or young age at diagnosis. There are panels that test for genes other than BRCA, genes that can cause various kinds of cancer including breast cancer. It’s not just BRCA! I have a genetic mutation that carries a higher risk for endometrial, colon, breast, and several other cancers. One of the companies that does this kind of testing is Ambry. In contrast, when we talk about genomic testing of a tumor sample, to look for mutations that the rogue (cancer) cells have undergone, those mutations just in the cancer cells are called somatic mutations. These mutations that are not in all the cells of the body, just the cancer, such as that ERBB2 mutation. Any germline (whole body) mutations will also show up in the tumor cells since tumor cells are our own misbehaving cells. That’s how I knew to get germline testing for me and my family: a mutation showed up in the tumor sample for Foundation One and the report said “most often a germline mutation”. Weirdly, some mutations can be either germline and therefore show up on both tests, or only somatic and therefore show up only on tumor testing. For example, there might be no BRCA mutation in the family, and the patient shows no germline BRCA mutation, but a BRCA mutation could occur just in the tumor. Interestingly, in either case, a PARP inhibitor, known to be effective in BRCA-related cancer, may be used to treat the cancer.

JFL, thank you for that really valuable information, which I have noted for the future, about getting insurance coverage based on trial results etc.

Jobur, we’re all in this together. A good thing about first trying a standard treatment like Xeloda, that we know has a good track record, is that it gives you more time to see what ongoing trials and new drug approvals come up with. Then again, maybe Nerlynx right now would be great.

2011 Stage I ILC 1.5cm grade1 ITCs sn Lumpectomy,radiation,tamoxifen. 2014 Stage IV ILC mets breast,liver. TaxolNEAD. Ibrance+letrozole 2yrs. Fas+afinitor nope. XelodaNEAD 2yrs. Eribulin,Doxil nope. SUMMIT FaslodexHerceptinNeratinib for Her2mut NEAD
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May 20, 2019 11:21PM jobur wrote:

Shetland - great explanation! Thank you and LoriCa for pointing out there is a difference. Words matter.

"What do you know, and what do you just believe?" Linda Hogan "Power" Surgery 6/30/2014 Lumpectomy: Left Dx 8/1/2014, IDC, Left, 1cm, Stage IV, metastasized to bone, Grade 2, 4/7 nodes, mets, ER+/PR+, HER2- Hormonal Therapy 8/3/2014 Arimidex (anastrozole) Hormonal Therapy 4/29/2015 Faslodex (fulvestrant) Targeted Therapy 8/16/2015 Ibrance (palbociclib) Dx 11/20/2018, IDC, 1cm, Stage IV, metastasized to liver, ER+/PR-, HER2- (FISH) Hormonal Therapy 12/4/2018 Aromasin (exemestane) Targeted Therapy 1/1/2019 Afinitor (everolimus) Hormonal Therapy 7/15/2019 Faslodex (fulvestrant) Targeted Therapy 7/16/2019 Piqray (alpelisib) Targeted Therapy 1/11/2021 Nerlynx
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May 21, 2019 02:17PM LoriCA wrote:

That was a great explanation Shetland!

Another example of a mutation that could be both - I have TP53 mutation. My report notes that functional loss of tumor suppressor P53 is common in aggressive advanced cancers, but in the appropriate context I should have germline testing of TP53. Since there's no history in my family of early cancers (or any cancers really) and no reason to suspect Li-Fraumeni syndrome, it doesn't make sense for me to have germline testing, but if there was a history of early-onset cancers in my family, germline testing of TP53 would be important information for my family.

IBC Stage IV de novo - mets throughout skeleton (bones & now bone marrow), liver, dozens of distant nodes, chest wall/pec muscle, skin, tumor in brachial nerves, thyroid, polycythemia from bone marrow involvement Dx 9/8/2017, IBC, Right, Stage IV, metastasized to bone/liver/other, Grade 3, ER+/PR-, HER2+ (IHC) Chemotherapy 9/26/2017 Taxol (paclitaxel) Targeted Therapy 2/6/2018 Perjeta (pertuzumab) Targeted Therapy 2/6/2018 Herceptin (trastuzumab) Chemotherapy 11/26/2018 Taxol (paclitaxel) Radiation Therapy 1/30/2019 Whole-breast: Breast, Lymph nodes, Chest wall Targeted Therapy Enhertu (fam-trastuzumab deruxtecan-nxki) Targeted Therapy Kadcyla (T-DM1, ado-trastuzumab)
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May 27, 2019 08:34AM - edited May 27, 2019 03:29PM by JanetMara

This Post was deleted by JanetMara.
Dx 5/22/2016, IDC/IBC, Left, 6cm+, Stage IIIC, Grade 3, 5/5 nodes, ER-/PR-, HER2+ (IHC) Chemotherapy 11/28/2016 Carboplatin (Paraplatin), Taxotere (docetaxel) Dx 7/2018, DCIS/IDC/IBC, Left, 6cm+, Stage IV, metastasized to other, Grade 3, 5/5 nodes, ER-/PR-, HER2+ (FISH) Targeted Therapy 11/9/2018 Perjeta (pertuzumab) Chemotherapy 1/25/2019 Carboplatin (Paraplatin), Taxotere (docetaxel) Targeted Therapy 3/9/2019 Herceptin (trastuzumab) Chemotherapy Carboplatin (Paraplatin), Taxotere (docetaxel) Targeted Therapy Perjeta (pertuzumab) Targeted Therapy Perjeta (pertuzumab) Targeted Therapy Herceptin (trastuzumab)
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May 27, 2019 03:23PM JanetMara wrote:

Sorry Ladies,

I am in the wrong thread,I am HER2+

JanetMara

Dx 5/22/2016, IDC/IBC, Left, 6cm+, Stage IIIC, Grade 3, 5/5 nodes, ER-/PR-, HER2+ (IHC) Chemotherapy 11/28/2016 Carboplatin (Paraplatin), Taxotere (docetaxel) Dx 7/2018, DCIS/IDC/IBC, Left, 6cm+, Stage IV, metastasized to other, Grade 3, 5/5 nodes, ER-/PR-, HER2+ (FISH) Targeted Therapy 11/9/2018 Perjeta (pertuzumab) Chemotherapy 1/25/2019 Carboplatin (Paraplatin), Taxotere (docetaxel) Targeted Therapy 3/9/2019 Herceptin (trastuzumab) Chemotherapy Carboplatin (Paraplatin), Taxotere (docetaxel) Targeted Therapy Perjeta (pertuzumab) Targeted Therapy Perjeta (pertuzumab) Targeted Therapy Herceptin (trastuzumab)
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Aug 16, 2019 04:44PM ShetlandPony wrote:

What did you and your onc decide to do, jobur?

2011 Stage I ILC 1.5cm grade1 ITCs sn Lumpectomy,radiation,tamoxifen. 2014 Stage IV ILC mets breast,liver. TaxolNEAD. Ibrance+letrozole 2yrs. Fas+afinitor nope. XelodaNEAD 2yrs. Eribulin,Doxil nope. SUMMIT FaslodexHerceptinNeratinib for Her2mut NEAD
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Aug 16, 2019 05:26PM Anotherone wrote:

Shetland pony, I so can see where you coming from re being jealous of people with her+ situation - I realised how happy I was when I was given stats for her+ nowadays versus for general metastatic bc and thought how sad and funny at the same time it was - when I was a participant of a young survival coalition forum while having primary cancer I looked at the section for metastatic cancer with extreme dread and now me being where I most feared I still find something to be happy about. We are all in hands of a fate and a bad poo anyway .

Primary in 2006, metastasis 2019. Sorry can lot log in diagnosis and treatment info properly - it gets jumbled. Dx 10/10/2006, IDC, Left, Stage IIIC, metastasized to lungs, Grade 3, 4/9 nodes, ER-/PR-, HER2+ Dx 7/1/2019, IDC, Stage IV, metastasized to lungs Chemotherapy 9/17/2019 Abraxane (albumin-bound or nab-paclitaxel) Surgery Lymph node removal: Underarm/Axillary; Mastectomy: Left; Reconstruction (left): Tissue expander placement Radiation Therapy External: Chest wall Targeted Therapy Herceptin (trastuzumab)
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Aug 16, 2019 06:31PM ShetlandPony wrote:

Ikr, Cancerland is a strange place. I was happy when my liver biopsy showed more ILC breast cancer, because it wasn’t bile duct cancer which is harder to treat. (Lesion #2 is in or near my bile duct.) We did not get enough tissue for genomic testing, so I did a Guardant 360 liquid biopsy. I can’t wait to see if that Her2/ERBB2 mutation shows up. If so, we add neratinib to Xeloda.

2011 Stage I ILC 1.5cm grade1 ITCs sn Lumpectomy,radiation,tamoxifen. 2014 Stage IV ILC mets breast,liver. TaxolNEAD. Ibrance+letrozole 2yrs. Fas+afinitor nope. XelodaNEAD 2yrs. Eribulin,Doxil nope. SUMMIT FaslodexHerceptinNeratinib for Her2mut NEAD
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Aug 17, 2019 09:54AM jobur wrote:

Hi Shetland! So funny you should bring this thread to the forefront again, I was just thinking of you and wondering how you were doing after all the crap you went through recently.

I'm sorry, this is probably not going to help you a bit, but about the time A/A was determined to be a failure, Piqray was approved, so I am back on fulvestrant with alpelisib. I have the PI3K mutation and had a wonderful long run on fulvestrant with Ibrance, so mo and I decided to try this combo rather than treatment targeting the ERBB mutation.

Hope you are feeling better and the Guardant biopsy gives you some good, actionable information. It sounds like you are in very good hands at your cancer center and will get good advice to help in making a decision.

"What do you know, and what do you just believe?" Linda Hogan "Power" Surgery 6/30/2014 Lumpectomy: Left Dx 8/1/2014, IDC, Left, 1cm, Stage IV, metastasized to bone, Grade 2, 4/7 nodes, mets, ER+/PR+, HER2- Hormonal Therapy 8/3/2014 Arimidex (anastrozole) Hormonal Therapy 4/29/2015 Faslodex (fulvestrant) Targeted Therapy 8/16/2015 Ibrance (palbociclib) Dx 11/20/2018, IDC, 1cm, Stage IV, metastasized to liver, ER+/PR-, HER2- (FISH) Hormonal Therapy 12/4/2018 Aromasin (exemestane) Targeted Therapy 1/1/2019 Afinitor (everolimus) Hormonal Therapy 7/15/2019 Faslodex (fulvestrant) Targeted Therapy 7/16/2019 Piqray (alpelisib) Targeted Therapy 1/11/2021 Nerlynx
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Aug 23, 2019 07:06PM ShetlandPony wrote:

Sure, Jobur, why not give that combo a try.

I would like to get some good advice but my onc is gone for two more weeks! She needs a break for sure, but bad timing for me. The Guardant 360 did not give me much actionable info. Get this: The ERBB2 mutation that was 17% (fairly high) last year now shows up Not Detected. Same with all the others, that were low percentages. There are two new ones detected at low percentages, but they are VUS (variants of uncertain significance). It may be that low tumor volume, low proliferation rate, and/or recent chemo has made levels below the detection of the test.

2011 Stage I ILC 1.5cm grade1 ITCs sn Lumpectomy,radiation,tamoxifen. 2014 Stage IV ILC mets breast,liver. TaxolNEAD. Ibrance+letrozole 2yrs. Fas+afinitor nope. XelodaNEAD 2yrs. Eribulin,Doxil nope. SUMMIT FaslodexHerceptinNeratinib for Her2mut NEAD
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Nov 27, 2019 05:59PM ShetlandPony wrote:

I re-did the Guardant 360 after three months, most of that time off chemo because of various complications, and the ERBB2 mutation showed up again. It also showed up on Foundation One tissue biopsy. However, while waiting for results, I started Doxil because my onc and I felt we needed to act without delay, based on my CT scan and symptoms. Now I will continue on Doxil and plan on neratinib as my next treatment.

2011 Stage I ILC 1.5cm grade1 ITCs sn Lumpectomy,radiation,tamoxifen. 2014 Stage IV ILC mets breast,liver. TaxolNEAD. Ibrance+letrozole 2yrs. Fas+afinitor nope. XelodaNEAD 2yrs. Eribulin,Doxil nope. SUMMIT FaslodexHerceptinNeratinib for Her2mut NEAD
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Feb 12, 2020 10:40AM ShetlandPony wrote:

Eribulin fail, Doxil fail. I am about to start the phase II SUMMT trial. It is a basket trial for various Her2 mutated cancers. The ER+ breast cancer cohort gets Nerlynx (neratinib), Herceptin, and Faslodex. I got neratinib approved by insurance but the trial offers me a three-drug combo, and I am a believer in combos.

In my reading I came across a paper that said Her2 mutations in breast cancer can be the cause of resistance to hormonal therapy. Indeed, mine showed up after progression following my two years on letrozole and Ibrance, and I have no other mutations that we know confer resistance. So the trial includes Faslodex so the cancer can’t just go back to the ER route.

I am worried that the PIK3CA mutation will make the cancer resistant to neratinib, so I plan on eating lots of foods that are natural PIK3 inhibitors. No way anyone will give me a PIK3 inhibitor like everolimus along with neratinib because the combo has not been tested. There is a phase 1 trial in Texas for that, but it lacks Faslodex.

2011 Stage I ILC 1.5cm grade1 ITCs sn Lumpectomy,radiation,tamoxifen. 2014 Stage IV ILC mets breast,liver. TaxolNEAD. Ibrance+letrozole 2yrs. Fas+afinitor nope. XelodaNEAD 2yrs. Eribulin,Doxil nope. SUMMIT FaslodexHerceptinNeratinib for Her2mut NEAD
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Feb 12, 2020 03:27PM BevJen wrote:

SP -

I think this is the first time I've seen you say that you are actually in the trial. Good for you. I'll be hoping to hear how this all goes, since I have that same stupid Her2 mutation. Good luck.


Microwave Ablations of the Liver: 7/2019; 10/2020; 12/2020 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 Radiation Therapy Surgery Lymph node removal: Left, Sentinel; Mastectomy: Left, Right; Reconstruction (left): Pedicled TRAM flap; Reconstruction (right): Pedicled TRAM flap Chemotherapy TAC Hormonal Therapy Faslodex (fulvestrant) 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 Femara (letrozole)

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