Triple Negative AND HER2 positive- anyone else? Recommendations?

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Gracemama
Gracemama Member Posts: 7
edited June 2018 in Chemotherapy - Before, During, and After

Hi All!

I was scheduled to start chemo next Monday for stage 3 HER2 positive breast cancer based on a lymph node biopsy. Yesterday we received the breast biopsy results back and this is Triple Negative. So it appears I have both breast cancers which are normally treated with completely different chemo protocols which will now be combined somehow. I am very concerned as I have thus far seen ZERO literature on treating both of these cancers at once. I am in New Mexico and am hoping to get a second opinion at Stanford but they want to start chemo hereASAP.

I would really love to hear about any one else who has been/is in the same boat and has any information/resources to share. Thank you incredibly much!!!!!

I’m a single Mom of an 8 year old and really need to do EVERYTHING to be super healthy and well for her for many many years to come!

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  • DATNY
    DATNY Member Posts: 358
    edited June 2018

    Hi Graceland, this is a really hard time, but hopefully soon it will get better. I suggest to get a second opinion on pathology. I had three done on mine to solve sort out through some unusual initial results. Hopefully Stanford will repeat your pathology on a new set of slides, rather then just look at the stained ones. Best wishes to you!

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  • Gracemama
    Gracemama Member Posts: 7
    edited June 2018

    Thank you so much DATNY! I’ve been asking quite vocally for a second pathology test here of the slides and they seem to be refusing to do so as the Parhology Supervisor was very confident in their results.

    I would love to have Stanford do this, as well! I SO appreciate you sharing your experience!!

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  • DATNY
    DATNY Member Posts: 358
    edited June 2018

    You are welcome Gracemama. It may turn out that the triple negative is weakly Her2+. At least ask if they did Fish test on the triple negative. I did not have this test, but I have learned on this site that is a more accurate test for Her2+.

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  • Washington48
    Washington48 Member Posts: 39
    edited June 2018

    I have triple negative stage 2 and HER2 positive—2 tumors in same breast. Triple negative was larger. Medical team moved quite fast—bilateral mastectomy three weeks ago and will start chemo next Monday. 4 cycles of DDAC and then 12 weeks of something else...not sure what. I have been doing a lot of reading— guess those of us with two types at once are a little more rare... not exactly the way I wanted to be considered special. Good luck, stay in touch — we will make it through this

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  • Gracemama
    Gracemama Member Posts: 7
    edited June 2018

    DATNY- thank you! I had asked about them doing a FISH test initially for accuracy but was told it was not necessary because it came back as 3+ on the staining for the lymph node biopsy that is HER2. I guess FISH is much more expensive. I didn’t think to ask about this for Triple Negative- thank you!

    Washington48- While I am happy to hear that I am not alone in this diagnosis, I am very sorry to hear of what you are going through with it, as well. I think your chemo regimen sounds like what they are proposing for me too.

    I had thought thebtriple negative protocol was surgery first and then chemo. I share your thoughts on the rare issue- cancer was really not the area in which I want to be a super achiever!!

    Hugs and healing to you both

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  • Momchichi
    Momchichi Member Posts: 133
    edited June 2018

    hi Gracemama,

    I have both but the HER2 wasn’t found until the final path report after surgery so my situation was different. I had AC and Taxol then surgery followed by TCHP - taxotere, carboplatin, herceptin and perjeta. So both were treated by a taxane type of chemo. My dr said it would have been the targeted therapies ( herceptin and perjeta) from the start had they known at the time. Best wishes to you and I’m glad you have this knowledge from the beginning, my HER2 continued to grow on myinitial chemo.

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  • Gracemama
    Gracemama Member Posts: 7
    edited June 2018

    PreK79- Thank you so much for sharing your experience with this. And your experience demonstrates something I find confounding- what is the best chemo when you have two different kinds- as for you the HER2 Cancer was still growing while you underwent triple negative chemo.

    I recall reading that Herceptin and Adriamycin of the AC are best not used together because it magnifies potential heart issues. It’s all a bit overwhelming and confounding.

    And also- how much due diligence from pathology can be expected to verify results? I would like them to use FISH for both samples but since they are satisfied with initial testing, they wish to proceed.

    Wishing you health and healing!!

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  • Washington48
    Washington48 Member Posts: 39
    edited June 2018

    first week of DDAC. Days one and two resulted in fatigue and headaches, but no nausea. I flooded myself with water and tried to keep walking! Days 3-5 were good! Now here is day 6 and I am wondering if reversion to exhaustion and slight nausea is normal day 6? Anyone know? Forced myself out the door for a shorter walk and an drinking as much water as I can hold.


    How are you all doing?

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  • Gracemama
    Gracemama Member Posts: 7
    edited June 2018

    I am so sorry you are feeling crummy day 6. I can relate. I’m not sure how DDAC and AC are different but I did feel really weak and crummy on day 1 (Monday) and needed the anti-nausea meds (mostly Zofran) in regular doses or I Would throw up. I felt like I Was getting better and yesterday I flew and enjoyed some site seeing with family. Today I feel like I’ve taken steps backwards in energy and nausea and needed TUMs to deal with acid and sudden constant burping- soWeird!!

    I’m drinking loads of water too and am generally quite healthy. It seems like it is not a linear journey as we might wish it to be. Hope you (and all of us!) feel better soon and heal super quickly!!

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  • exercise_guru
    exercise_guru Member Posts: 716
    edited June 2018

    I had ER+ and HER2+ so in my case they went with TCHP but there was a gal in the 2018 group who started on TCHP and then switched to AC-THP I think.

    In Europe some doctors actually really like AC for Her2+ tumors so the fact that you are doing AC is fine. At some point you will probably be on Herceptin and Perjetta for a year as maintenance. They might have you do Taxol or Taxotere with Herceptin and Perjeta after the AC.

    you are actually getting a very good treament from what I read. Even though I was not triple negative I I was double negative with just HER2+ I had hoped I would qualify for Imbrance.

    Just make sure that your team is consulting with a very reputable cancer hospital. I would personally fight for Perjetta & Herceptin after the AC . They didn't give it to me because my tumor was less than 2cm.

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  • Washington48
    Washington48 Member Posts: 39
    edited June 2018

    Finally feeling great again! Could even have the grand-girls stay for a sleep over! Have started keeping a super tall coffee mug with straw full of water next to the sink so when I get up at night, I rehydrate immediately! I wake up in the morning feeling so much better. No longer “trapped in a terrible hang-over”. My mantra is water-water-water. No SE from the Neulasta but did and am taking daily dose of Claritin. I have to injection self as I live over an hour from medical center. Feeling lucky to live fairly near Seattle with its cutting edge Fred Hutch and Cancer Care Alliance research. (Though I am wit her Kaiser Permanente)

    Go Chemo Warriors! We WILL get through this and then I plan to see Paris

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