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Anyone else ER+ but PR-?

JennaLex Member Posts: 4

ER+, PR-, HER2+ is a very rare subtype, but I was hoping that with the size of this forum I might find others with this diagnosis. I've completed TCHP, surgery, and Kadcyla, and am now on ovarian suppression (Zoladex) and supposed to be taking aromatase inhibitors (Letrozole). Originally they were going to put me on Tamoxifen, but I did some research and saw that Tamoxifen resistance is common with PR- and my oncologist agreed and said I should do OS/AI instead. (I have to admit, I was hoping she would say we shouldn't bother with endocrine therapy at all. Like that would happen, lol.) I'm 5 months in and am miserable with insomnia, brain fog, fatigue. I'm pretty certain it's the artificial menopause, since it was like this during chemo induced menopause. I had a brief 3 months break from feeling this way midway through Kadcyla, when I got my period back and suddenly started sleeping through the night again. I'm desperate to feel better again, but afraid of having a recurrence. I feel like with my subtype and Kadcyla for early breast cancer being a new therapy, there's no way to know how much hormone therapy will or won't help me in the long run. My oncologist says "on an individual level, it doesn't make sense, but on a population level, it does." I don't know what to do!


  • specialk
    specialk Member Posts: 9,221

    jennalex - Initially my biopsy showed me as triple positive, strongly ER+, less so PR+, strongly Her2+. My surgeon was participating in a trial with Mammaprint and submitted one of the biopsy cores to them to run a Mammaprint. It came back ER+, PR-, Her2+ and additionally I am ErbB+ type rather than Luminal B, as some who are triple positive can be. I was regarded as triple positive due to that weak PR result from the original biopsy, but the aggressiveness of the combo of PR- and Her2+ were not disregarded with my treatment as well. I think a generalized thought process is that the initial recurrence threat is the Her2+ aspect in the first 2-3 years, but the long game is to ward off ER+ driven recurrence with anti-hormonals. I was treated long enough ago that neoadjuvent chemo was a rarity (it became more widely used as Perjeta was introduced for early stagers in 2013) and Kadcyla and Nerlynx were not available yet at all. If you are experiencing difficulty with your anti-hormonal I would suggest you change brands, and/or drugs to see if that improves things. I did so with letrozole and anastrazole throughout the 7.5 years I took them. The fewest additives and fillers can make a difference, as can name brand. Linked below is a site that shows what inactive ingredients are contained within each manufacturer's product. Also linked is a direct mail pharmacy that fills brand name Arimidex but does not bill to insurance and provides Arimidex at a greatly reduced cost in case your insurance won't cover name brand and you want to try it. Some have had success with having their oncologist write "no substitutions, brand name only", but I know my insurance still didn't cover. I never tried name brand Arimidex, did ok with the generic. I started on letrozole (Mylan), then anastrazole (Accord), then back to letrozole (Roxane - which was awesome, alas they no longer make it), then another generic at the end.

  • Xipie
    Xipie Member Posts: 5

    I am also ER+, PR - and HER2+. I haven't started any treatment yet as I just had a BMX on 12/16/21. But since it metastasized to one of my lymph nodes I'll be doing TCHP chemo, I'll have my port surgery on Jan 20th. I'm so nervous, I hate being poked and prodded.

  • JennaLex
    JennaLex Member Posts: 4

    Thanks for your response, Special K. In my case, the Zoladex is causing all of the difficult side effects, so changing aromatase inhibitors wouldn't have been likely to make a difference.

    Thanks for posting, Xipie. It's good to hear from someone else with this rare subtype. I hope your port surgery goes smoothly and that TCHP isn't too hard on you. Feel free to reach out if you ever have any questions or need support.

  • barbojoy
    barbojoy Member Posts: 47

    Hey JennaLex- I am ER+, PR-, HER2+ as well. The original biopsies came back for me as triple positive, but the pathology from the mastectomy showed <1% PR, so I am considered PR negative.

    I start radiation this month- mapping Thursday. My MO is recommending Letrozole for me instead of Tamoxifen. I am 46 and I am still in chemo-induced menopause- my last infusion was 01/13/2022. I think doc is choosing Letrozole because I may be close to biological menopause? Not sure?

    Did they put you on Kadcyla right away? I am getting Phesgo injections every 3 weeks and I think the side effects are minimal. Like you, I worry about metastasis or recurrence. I am sorry that the side-effects are so disruptive. :(. I keep ending-up with the rare or unlikely side-effects along this cancer trip and it sucks.

    They have a whole list of targeted therapies on this site- maybe a different drug would help?

    Xipie-my BC is pretty close to your diagnosis. IDC left 1.9CM ER+/PR-/HER2+ they removed 1 lymph node during surgery and it was positive. I also did a double mastectomy and TCHP. I hope TCHP is tolerable for you. Everyone "soft sold" chemo to me. While I knew it would be tough, I did not expect it to be as hard as it was for me- I was hospitalized twice for Typhlitis and doc had to lower my taxotere for the last 3 infusions. I didn't even think to discuss it with her at first and I probably should have. There are so many options that they have now and if I had to do it over again, I would over-communicate with my MO about my side effects and quality of life.

    Wishing you well with chemo!

  • JennaLex
    JennaLex Member Posts: 4

    Hi Barbojoy, thanks for your response. I didn't start on Kadcyla immediately after TCHP. I had an HP infusion before surgery, and another one after, before we got the pathology results and got Kadcyla approved by insurance. Unfortunately those didn't count towards my total of 14, but it was nice to have a break. Sorry to hear you're dealing with so many side effects. I feel like I've gotten off easy with some of the harder treatments, but am having a harder than normal time with what is supposed to be the easy part. We never know what we're gonna get!

    Thanks for the list of targeted therapies. I don't think I qualify for any of them since I completed Kadcyla, but I'm actually in a HER2 vaccine trial, which is exciting. My MO and I have decided to stop Zoladex and give me a month or two to recover. Then I'll start Tamoxifen, which I have reservations about, but I'm not going to think about it too much until I've gotten my sleep back under control and don't feel like such a mess all the time.

  • jullyn
    jullyn Member Posts: 40

    Hi all. I was diagnosed HER2+ ER+ in August 2021 with lymph node involved. . I Have completed 6 rounds of TCHP and had a lumpectomy in January. I started 5 weeks of radiation in March along with continued infusions of Herceptin and Perjeta. I will be starting on Zometa after radiation. I live with the fear of recurrence and having to go through this again.

  • JennaLex
    JennaLex Member Posts: 4

    Hi jullyn, welcome and congrats on making it through TCHP and lumpectomy, and I'm guessing you must have had a PCR if you're getting HP instead of Kadcyla, so huge congratulations on that! I hear you on the fear of recurrence. Will you have hormone suppression therapy in addition to the Zometa?

  • amyc15237
    amyc15237 Member Posts: 1

    I was diagnosed with Er +, PR - and Her2 -. I had surgery on 3/17 and currently waiting for my mammaprint results.

  • jullyn
    jullyn Member Posts: 40

    jennalex , I did have PCR and will have hormone suppression. How about you? Where are you in this journey?

    Amyc15237 I hope you get results soon.

  • katg
    katg Member Posts: 206

    Hi all,

    I was diagnosed with ER+, PR- and HER2- - last July. August 13 2021, my genetic test came back that i have BRCA-2. My chemo changed and I went from 4 Red Devil every 2 weeks to12 weeks, every Friday of two chemo. Taxol was one of them. Then i was to get that Red Devil too every 2 weeks after the Taxol.' In mid November, I was hospitalized with.

    Pancytopenia - a lowering of all three types of blood cells; red blood cells, platelets, and white blood cells, which may lead to low red blood cell count, low blood platelet count, and/or low white blood cell count.

    The City of Hope team of MO's talked and said i would be best moved to a targeted pill therapy. My Red Devil chemo was stopped at one dose. My target therapy pill- Talzenna was started. 27 days later i had the same blood results. CRAZY. No more of that pill either. My original diagnosis was Stage 2.

    For me, over 14 weeks of chemo, I had no nausea due to Zofran and Compazine rotated used for 3 -4 days after my infusion in rotation. I did though have fatigue that i only acknowledged when my sister told me i was not tired, that was fatigue. Dangerous. That is what got me hospitalized that same day in November. I also have chemo fog and my big side effect, which was constipation. OMG. I have never had these problems. I am 61 years old and started this journey at 60. Senna the laxative became my friend. But because of my hesitation or procrastination, i ended up with hemorrhoid issues that just made me best buddies with hemorrhoid cream and good ole Vaseline for months

    I forgot to say also that my hair was gone as had been told here and by my MO with in 2 weeks of my first infusion. May 20 days and most was gone. Long for 40 years, and cut to above my shoulders for one week and 2 inches all the way around in another week. That made the falling out the rest of the way easier to take. I have my head covered now...just covered, maybe 1/2 inch. It is not my red, it is older lady brown. I have many beanie caps from and 2 wigs. With one of the wigs i get many complements that they love my hair cut!!

    I had a left mastectomy to remove the tumor due to the stopping of chemo. Get it out!! Along with that i had my ovaries and fallopian tubes removed. Menopause happened 20 years ago. No cancer in their. None in my lymph nodes or vascular system....BUT! my tumor tested HER2 positive!!!!! My diagnosis has changed. The radiologist DR said i did not need radiology as its benefit in my 2% of cases, was just not worth it. I had just been prescribed Letrozole which like many of you, I am to take for 5- 10 years. After 1 month, no serious side effects yet. Also prescribed last week once the final surgery results were posted on March 22nd, I was advised that Herceptin infusions were next on my journey. Every 2-3 weeks for a good while into the future. Might i say that this HER2+ was likely in there a while. My tumor was 5cm and I found it June 20th. It grew fast. HER2 is fast moving. Why it said negative? I am not a doctor.

    My medical oncologist at City of Hope is meeting with the tumor doctor panel to see there suggestions for me. Will i get Perjeta too?

    My treatment is based on my case and my effects and my bodies reaction. I have your diagnosis, yet with BRCA2 tossed in. BRAC2 for me was fueled by estrogen. So gone the women's parts that produce it and in is a pill to stop other body parts from producing it. Gone on May 31 as it stands now, to remove the right unaffected breast. Do i keep it and wait to see if cancer shows? No. I am blessed to not have had big breasts. My fake left side with the skin saving method and the inflator is just ok. Acceptance comes a day at a time, as i say good bye to the right side. Seems I could save the nipple on that side. Hum. Barbie boob on left no nipple and fake with nipple on the right?

    These side effects stop with the chemo end. I need to get my first Herceptin infusion to see if i have side effects or they return. My friend in Texas being treated at M D Anderson, is on Herceptin. She calls it a miracle. She has breast breast cancer stage 4 that metastasized to two other places, so she was given a year. She is past 2 years and her target therapies including Herceptin are keeping her steady.

    One Day at a Time. I live this diagnosis one day at a time. I do not look ahead to treatments, I ask what my next suggested treatment is and what it is expected to do. After i do the test or start the chemo or drug i look for your experience. Find medical info talking about it. I have not been freaked out. Stage 1 or 2 has so many more good outcome possibilities. I am not wasting my Stage 2 feeling bad. Acknowledge what hurts and get help. Nervous, tell my medical team. Talk with my sister and close friends for moral support. We do not do this alone.

    Ok. all my posts will be short, i just got started and filled in all the journey.