ER+, PR-, Her2+ Roll call
Hello, I did not see a topic for ER+, PR-, HER2+, so thought I might start a new thread. Maybe we could share stories and information in an effort to help one another. I understand that alcohol is something we should limit to one drink per day, although this may not pertain to those who do not drink (I'm working on that one). I will complete a year of Herceptin and Perjeta and then my MO mentioned Nerlynx or Kadcyla, I will have to wait and see what the decision is that he makes at that time, but the hormone he has chosen for me is anastrazole (Arimidex) and I started it 3 months ago, before I started radiation. I will be 56 this summer. Best wishes to everyone, thank you. Lisa
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Hi there 😀 Not sure if it makes a difference but I’m on Herceptin and Perjeta for stage IV de novo until it stops working, 2.5 years so far. For the ER+, it’s Tamoxifen but I may be switching to Arimidex next month, with or without a Lupron shot, pending estrogen text results. I’m 44. H&P has been pretty easy but the tamoxifen and treatment related arthritis has taken a toll on my knees.
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Hi Illimae, thank you. I remember you were one of the first posts I saw when I came here after I was diagnosed. I have read some posts from folks who were on Herceptin longer than a year. My MO told me it has really been beneficial for HER2+ women. I guess there is a movie that runs on Lifetime occasionally about the man who invented the drug, maybe I will get to see that sometime. I've had a little joint pain and hot flashes on anastrazole. My husband will tell me, I have joint pain too, to try and lighten that up a little, and the MO has told me the hot flashes will go away with time. I get a DEXA scan Thursday, my first one, to check bone density. And then there is my drippy nose, which you just get used to!
Are you still taking radiation? I hope that is going okay.
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1 year is typical for early stage BC but us stage IV folks stay on as long as possible. The movie is called Living Proof, I haven’t seen it yet but plan to soon. The rads I had recently were to a couple of spots in my brain, so far so good.
We are a less common subtype for sure but it doesn’t seem like the PR- makes any real impact on treatment choices. Good luck with your tests 😀
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"it doesn't seem like the PR- makes any real impact on treatment choices"
That depends - ER+ PR- frequently falls into Luminal B with high grade, high ki67, high OncotypeDX score. Luminal B is commonly resistant to hormone therapies, the percentage of de novo resistance is very high according to the studies I've read. In addition the HER2+ downregulates ER, so if ER is low/weakly positive and then further downregulated by HER2+, chances are slim that there will be any response to hormone therapy. Because I'm only weakly ER+ and strongly Luminal B (Grade 3, ki67 in 60s-70s every time biopsied, OncotypeDX of 93 - done by mistake since I was Stage IV de novo but interesting to see), I have never been prescribed any hormone/endocrine therapy because there is very little chance it would have any effect for me.
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Hi MCLady! i am glad you started this thread. I too was looking for one.
LoriCA - I find what you said very interesting. My MO has told me he doesn't plan to perscribe any hormone therapy for me. From the start, he called my 20% ER + weakly ER and said the benefit I would see would not be greater than the possible challenges of the SE's. As I have worked my way through active treatment - now just doing HP - this has worried me some, athough I am at the same time glad to not be taking the hormone meds. Your explanation is the first I have seen that addresses the issue. Is there more you can share about this?
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LoriCA, you’re correct, it depends.
In my case, I was 90% ER+, so I’ve been on Tamoxifen with H&P. I really don’t like the estrogen blockers but I am grateful for the option of having more choices of meds.
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Frmthahart are you early stage or metastatic? Did your pathology report list your ki67, and/or do you have an OncotypeDX score? I thought it was strange that it seemed like I was the only person I knew who was ER+ and not on any kind of hormone therapy, but the more I started researching, the more I started to understand why. Plus I'm metastatic with a poor prognosis (TBH the median survival for Stage IV de novo IBC is still only 21 months) and my MO is very focused on quality of life for me, so for me it makes sense that my doctor feels that the SEs aren't worth it for any slight possibility that they might work. There are other treatments that have a much higher chance of working for me. I'm interested to hear if you are early stage and your doctor came to the same conclusion.
I had one really good article about the complex relationship between ER and HER2 (ERBB2) and how it affects Luminal B and hormone/endocrine resistance, but I can't seem to put my fingers on it right now. I will post it if I can find it again. Anyway here's a few that give some insight into Luminal B and resistance:
This one probably has the most info (except for the one I'm still trying to find), summarized with "Although luminal B cancers are ER+, they do not appear to exhibit a corresponding expression of estrogen-regulated genes and may therefore depend on alternative pathways for growth." Estrogen receptor-positive breast cancer molecular signatures and therapeutic potentials
This one has some good info - "There is increasing evidence to suggest that breast cancers that express both HRs and HER2 are somewhat intrinsically resistant to endocrine agents, and that these cancers are, in fact, driven by the HER2 pathway." Genomic SubTypes in Choosing Adjuvant Therapy for Breast Cancer
A few more that touch on the subject -
"Luminal B cancers, though ER+, are resistant to hormone therapy and have a distinct molecular phenotype from hormone-sensitive luminal A cancers, with luminal B sharing many molecular features with ER− cancer subtypes." https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3430090/
"HER2 amplification occurs in about 10% of ER+ breast cancers and is an established mechanism of endocrine resistance." https://ascopubs.org/doi/full/10.1200/EDBK_159198
"As luminal B breast cancers are characterized by the lower expression of ERα than luminal A breast cancers, there is a higher probability of ERα expression loss in luminal B breast cancer" https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6394602/
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I’m so happy to have found this thread. I’m new to all of this, just having received my biopsy report a few weeks ago. I had a meeting with an oncology surgeon, but it didn’t seem like a good fit, so hope to find a medical home next week. Thus far, I’ve been numb and having a hard time understanding all the pieces of my diagnosis. I hope to move past the shock soon and hopefully contribute something useful here. Assuming I do belong in this thread, this is what I know so far:
6/18 biopsy
Biopsy: two masses, malignant ductal invasive carcinoma, 3.4 cm, and benign FC, 1 cm
Receptors: ER (+) weak, PR (-)
HER 2 (+) 3+
Ki- 67: high
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Hi all. I was originally er+ 40%, pr + 5% and her2+. After neoaduvant TCH my tumor shrank but did not achieve pCR. The path report from bmx shows I am now er+ 60% and pr 0.
I am currently on Kadcyla every 3 weeks and have been on Tamoxifen for 1 1/2 weeks.
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Shelligirl - I had a similar expression of my cancer except it was much smaller. I go in for my 5 year out mammo on Monday. I still struggle with dreams of recurrence near my anniversary dates and feeling new "lumps" and pain. So far, all have been negative!
You're right to find a medical home that works for you. I went through a similar process when I was treated. You're going to be in treatment a while and you should be in a place that you feel like you have a voice, and support and a valid opinion. Do NOT hesitate to bring up side effects and things you notice when you come across them. I even got a flare up of acne when I first started treatment. When I asked my onc why he didn't say this could be a side effect, he said "if I told you all of possible side effects, you probably would refuse treatment! Each person is different so the likelihood if experiencing ALL the side effects are low BUT....tell me as soon as something changes for you so I can help you through it."
Also, all of you, breastcancer.org was a great resource for me during treatment. I joined a "starting chemo" group - we all started in the same month so we could give each other a heads up on side effects and what worked to resolve them. I was lucky to have a research junkie in my group also. She found articles and new information that I was able to discuss with my onc. as we went along.
It's a long strange road you're on - but know it's packed with people that have been there and done that. You're not alone!!
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Thank you all you brave and wonderful women for sharing information. Shelligirl, Hikingandhorses is right, you are not alone, and look for a chemo group once you know when you start. You can read other chemo groups' posts for helpful info. I just wanted to say that I had two masses too, one was the lovely "taller than wide" and the surgeon took them both out. Trying to get through radiation now. I appreciate the links and will read these, thank you. Hugs to everyone, Lisa
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LoriCA Thanks for all the info. It will take me some time to get through it! I am Stage 3A, grade 3; ER+ (20%); PR- ; Her2+++; Ki67 60 %. I will have HP till November. His plan then is to put me on Nerlynx for a year.
Shelligirl Sorry you are here, but glad you found us! I hope you find a good fit with a medical team soon. I don't know what I would have done through all the twist and turns if I didn't completely trust my team. Hang in there and know you are not alone!
Hikingandhorses Thanks for sharing your story! I know in the early days of my diagnosis, I was looking for others who were ER+PR-Her2+ that had some longevity of life. Congrats on your 5 years!!
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Frmthahart - we are talking about Nerlynx too.
I have HP through November as well. I saw someone on the Nerlynx May 2019 or maybe June 2019 board talk about "buttsoup", which made me laugh, lovely Perjeta! You are not alone!0 -
Frmthahart, wow you're like me and about as Luminal B as one can get! Anything over 20 ki67 is considered high (although some still use the old number of 14), so those of us with scores above 50 are at the extreme end. It's reassuring to me that your doctor came to the same conclusion that mine did about hormone treatment. I don't feel so alone now haha!
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Hi there! I am Stage IIa, ER+/PR-, HER2+, 1 positive node. I never got a KI67 number but my pathology said grade 2. BRCA1 positive.
I had TCHP for 6 rounds followed by HP to make a year. Double mastectomy with tissue expander. Radiation. Arimidex (current). DIEP flap surgery (phase 1). I am currently on my first week of Nerlynx (which has been horrible).
I need to finish my DIEP Flap revisions. I also need to have prophylactic salpingo-oopherectomy (and possible hysterctomy). It never ends.
I would love to learn more about exactly what the PR- means. My oncologist is pretty closed mouthed about it other than acknowledging it is a poor prognostic indicator.
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I am kind of sitting on the sidelines, you all know so much, I'm learning, thank you for all the valuable information.
I did ask my MO about what the PR- means, and he sent me this note: " If a patient is ER + but PR - their prognosis is slightly worse than if ER + and PR +. But in today's world with current therapies, from a therapy standpoint it does not change things. If ER positive then a ER blocking agent. If her2 positive then her2 blocking agents. Hope that helps!" He is an awesome doctor. Best wishes to everyone today. I have 9 radiation treatments left and look forward to finishing.
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Hello-
I am new to this category. Original Dx was E/P+ but HER2-
After mastectomy, now HER2+
I completed AC chemo and then they stopped treatment before I started Taxol as there was no response.Had BMx on 6/24. Still healing and will see Onco on Thursday to discuss starting Taxol and Herceptin. Honestly, feeling frustrated and a little sad today. Came to find out more info on Hercpetin etc as my April 2019 Chemo group doesn't have any HER2+ members.
Thanks-Karen
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Hugs to you, Karen. I've been on Herceptin and Perjeta since November and will continue for one year, I go every 3 weeks. I am going to say you are triple positive, right? There is a triple positive page too, that is very active and offers support. You can go there and talk about anything! I honestly think Herceptin is a wonderful drug that has saved a lot of lives. It does make my nose drip! I hope your healing continues and your visit on Thursday goes well. I am trying to finish up radiation, almost there. Hugs, Lisa
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Hello everyone,
I'm new here. Dx with Stage 2 Grade II ER+/PR+, HER2+. Treatment plan AC chemo 2 weeks for 4 cycles followed by Taxol weekly for 12 weeks with Herceptin and Perjeta every 3 weeks for a year. Any advice?
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I thought I had posted a follow up, but don’t see it, so if this is redundant, I apologize. First, thank you for your support and information. The article links helped me.
I’ve found a good place at UTSW. It is such a luxury to have everything in one place and knowing I don’t have the stress of coordinating appointments.
My oncologist did take a pause with my low er and negative pr. She has ordered my slides and is going to do a fish test.
Starting on 6 rounds every 3 weeks of taxotere, caboplatin, Herceptin, Perjeta and then surgery. I post this because any other newbies might find it interesting that they do chemo first now.
My blood pressure was 185 over 98 and I don’t have high blood pressure. Ha!Walking into that cancer clinic almost made me stroke out. I’m still finding it hard to breath. Reading these posts and learning from your experience if a great help. Thank you.
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Welcome, nuf1919! We're glad you've joined us here, although we're so sorry for the circumstances that have brought you here. We hope you find this community to be a source of support and encouragement!
The Mods
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Hi nuf1919 and welcome and Shelligirl. I had the TCHP (taxotere, carboplatin, Herceptin, Perjeta). There will be a group for folks starting chemo for the month you start, say "starting chemo August 2019" and I would recommend joining with others starting when you do. You can look back on other groups and find helpful information too. They will tell you everyone is different until you get tired of hearing it, at least I did, but it is very true. I cut my hair really short because within a couple of weeks of your first treatment, you usually lose your hair. This was hard for me when it happened, even though I tried to be ready. There is also a triple positive group you can look at that talks about everything, they are very active, and those ladies are very smart and helpful.
Shelligirl, I go in the cancer center every day for radiation and I remember the first time I walked in there. Hugs to you ladies. I had chemo first, and it shrunk everything completely so I only had to have a lumpectomy. Two of the women I work with both had double mastectomies, one did great, and one is going to a wound center because she had one infection after another (everyone is different).
There are vitamins you can take to help with different things during chemo, you might ask your doctor, I take magnesium to help with leg cramps even now. Chemo is about the best diet you can go on, so if you are a thin lady, I would recommend eating well before you get started. This is a great website full of information and support. Hugs, Lisa
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Thanks, Lisa! I will join the chemo group as soon as I know my start date. I need to admit that I am scared out of my mind, so much so, that I canceled my appointment for my port procedure (was scheduled for today). I’m trying to read everything I can and absolutely know how lucky I am to have this opportunity, but I need a little more time.
Wondering if someone might be able to answer a question for me or if this is right right thread. My first consult I was told Arimidex Tamdxifen, Arimidex Tamoxifen and Herceptin Projeta. I was told that these drugs have no side effects and that after surgery I would get traditional chemo. I’ve googled these drugs and they do have side effects. Also, the drug name typos are not mine, if they are typos, I copied these from the doctor’s handout. I really liked this approach because I would still be strong for surgery. UTSW is using 6 rounds ofTHCP. Is this normal for different doctors to have different approaches? Both doctors had same reports and tests. Seems like the first shot should be standard.
Thanks again, everyone.
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I had a port placed and had 6 rounds of TCHP. We are all different, but I am glad I had the port. They hook you up every time you come in and I liked that better than having a needle placed every time. They check your blood every time, using the port, to make sure everything looks good (platelet count). TCHP is Taxotere, carboplatin, herceptin and Perjeta. At least for me, they didn't start a hormone drug (Arimidex or Tamoxifen) until after I had chemo and surgery. I am by far no expert, but I believe they look at whether you are premenopausal or postmenopausal to decide which drug - that may not be correct. I am about to finish radiation and have been on Arimidex about 4 months now. I do believe these doctors use some type of standard of care. My doctor talked to me about Nerlynx after I complete a year of HP, but he is not convinced with the research that is out there right now. Hopefully, by November, the research will be stronger. (There is also a Nerlynx page on this website).
There is a book I found helpful called "Uplift: Secrets from the Sisterhood of Breast Cancer Survivors." It shares helpful tips on dealing with everything; chemo, radiation, surgery, loss of appetite, hair loss. You can get a used one off Amazon for about $4. You'll lose your hair with TCHP. I still have my port and am not in a hurry to get rid of it, but some ladies want it out right away. We are all different. Keep reading, Shelligirl, but remember that everyone is different. I got tired of hearing that myself, but in the end, it is so true. Not everyone has the same side effects from things. There is a good place on this website on how to understand your pathology report too. Best wishes and hugs to you. Lisa
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I felt like I had a year long hangover during chemo. I was tired all the time but wanted to do stuff. Naps became my best friend. STAY ON TOP of nausea meds - take them before you feel bad. I'm a construction contractor so I was so not used to just sitting around. I did as much as I could around my house and at my parent's farm. My onc said I pretty much sailed through chemo - didn't feel that way to me - but I contribute my "success" to movement and exercise. I walked often, stretched a lot and slept when my body demanded it.
As far as the port - my onc told me that anyone on herceptin gets one because the drug is caustic to skin. (isn't THAT nice). The nurses would glove, mask, eye,guard and gown up before starting my chemo. The port pretty much guarantees a good stick versus using a needle in the arm. I was one of those people who had the port removed right after chemo. If you choose to leave it in for awhile after you're done, you have to go in periodically to have it flushed to keep it open.
You all are amazing women - open, caring, supportive - just lovely. For those just starting your journey - you can do this. Losing hair doesn't lose you in the process - it's just a thing and for the most part, it will grow back.
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I too am scheduled for 6 rounds with 2 already done. I can no longer feel the tumor and wondered if anyone ever has resorted to going to surgery eliminating the remaining treatments?
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cccooper, I had the same question, so hoping you get lots of responses.
My OC told me that even though I don’t have the cancer gene, microscopic cancer cells kind-of spew/rain through my blood supply, so chemo is a must. I believe some her-negatives get to trade chemo for hormone treatment, but not an opinion for positives.
I’m very new to this, so I am not a knowledgeable resource for you, but I am a fellow searcher and appreciate your question.
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Recieved the results from my second biopsy and I’m no longer eligible for this group. My new markers are her2 positive, ER -, PR-. Not sure if this is better or worse and would appreciate any insights.
Now scheduled for a CT scan even though I’ve already had an MRI. Has anyone else taken this long to get started on treatment?I was diagnosed on 6/18.
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Anyone here with her2 positive voule avoid radiotherapy?
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Hi Margun! I was HER2+ and didn't receive radiation. My rad onc said with my 4cm margins and a year of Herceptin, he thought it might do more harm than good.
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