HER2 positive & HER2 negative: I have both at the same time

Posted by rraw @rraw, May 25 4:30pm

Anybody experiencing both at the same time?

@rraw
Wow! Do tell us about the circumstances… two different tumors? What treatment/s did your oncologist recommend under the circumstances?

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Hello @rraw and welcome to Mayo Connect,

Is this a new diagnosis for you? Have you met with an oncologist yet to discuss your treatment options?

I would like to invite other members of the Breast Cancer discussion group to this discussion, @elizm @trixie1313 @cindylb @elsie37

Have you had surgery yet?

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@hopeful33250

Hello @rraw and welcome to Mayo Connect,

Is this a new diagnosis for you? Have you met with an oncologist yet to discuss your treatment options?

I would like to invite other members of the Breast Cancer discussion group to this discussion, @elizm @trixie1313 @cindylb @elsie37

Have you had surgery yet?

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Originally diagnosed in April 2015 HR+ER+ HER2 neg. 2 surgeries/8 rounds of chemo/33 rounds of radiation and then declared NED. Started Arimidex in Jan 2016. Cancer came back in September 2019 but presented as HER2 +. I started Herceptin/Perjeta but in January 2020 we discovered more tumors and these presented as HER2 neg so we added Ibrance and faslodex. The HER2 + is responsive to treatment but the HER2 negative is progressing. Seeing local oncologist and I have been to Duke for a consultation. I am currently waiting on the results of a Foundation 1 test to determine which treatment or clinical trial might be a possible course of action. The good news is, I am experiencing no pain or obvious symptoms.

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@rraw

Originally diagnosed in April 2015 HR+ER+ HER2 neg. 2 surgeries/8 rounds of chemo/33 rounds of radiation and then declared NED. Started Arimidex in Jan 2016. Cancer came back in September 2019 but presented as HER2 +. I started Herceptin/Perjeta but in January 2020 we discovered more tumors and these presented as HER2 neg so we added Ibrance and faslodex. The HER2 + is responsive to treatment but the HER2 negative is progressing. Seeing local oncologist and I have been to Duke for a consultation. I am currently waiting on the results of a Foundation 1 test to determine which treatment or clinical trial might be a possible course of action. The good news is, I am experiencing no pain or obvious symptoms.

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Would love to hear if anyone else is having a similar experience

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@elizm

@rraw
Wow! Do tell us about the circumstances… two different tumors? What treatment/s did your oncologist recommend under the circumstances?

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Originally diagnosed with HR+ER + HER2 negative in 2015. Surgeries/chemo/radiation then declared NED. Reoccurrence in September 2019 but this time HER2 positive. I started Herceptin/Perjeta. In January 2020 new cancer was detected but this time HER2 positive and so we added Ibrance and Faslodex. The HER2+ is responding but the HER2 negative is progressing. I am awaiting results of a Foundation 1 test now. Working with local oncologist and oncologist from Duke.

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@rraw

Originally diagnosed with HR+ER + HER2 negative in 2015. Surgeries/chemo/radiation then declared NED. Reoccurrence in September 2019 but this time HER2 positive. I started Herceptin/Perjeta. In January 2020 new cancer was detected but this time HER2 positive and so we added Ibrance and Faslodex. The HER2+ is responding but the HER2 negative is progressing. I am awaiting results of a Foundation 1 test now. Working with local oncologist and oncologist from Duke.

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@rraw
Thankfully, you have access to Duke University Medical Center which has excellent providers to recommend appropriate treatments. I remember being told that, although I was HER2+ when first diagnosed, any recurrence could be positive or negative. I didn't envision your situation, however. Although I'm absolutely no help, you have taught me something new… which is one of the purposes of this forum, I guess, and for that I thank you.

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Sharing is indeed helpful and hear. Thank you for listening.

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I was diagnosed with both estrogen receptive and Triple Negative.I was lucky to be in stage one. I did the Adriamyicin and cytocin, then I did Taxol. They wanted me to do Capcetabeen but I couldn't tolerate it. MI had already lost 50 pounds. I was not eligible for a trial due to the fact my remaining cancer was too small. I am now on an aromatase inhibitor, Arimedex. I am now 72 this was my second stint with Cancer. My first was 17 years ago and that was Estrogen receptive. Please excuse the spelling of the drugs. I due have vaginal dryness, dry eye, dry mouth and persistent neuropathy in my toes. I was very lucky to have the same Oncologist that I had 17 years ago. Together we beat this. Hang in there we can do this.

Liked by trixie1313

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@lucillem72

I was diagnosed with both estrogen receptive and Triple Negative.I was lucky to be in stage one. I did the Adriamyicin and cytocin, then I did Taxol. They wanted me to do Capcetabeen but I couldn't tolerate it. MI had already lost 50 pounds. I was not eligible for a trial due to the fact my remaining cancer was too small. I am now on an aromatase inhibitor, Arimedex. I am now 72 this was my second stint with Cancer. My first was 17 years ago and that was Estrogen receptive. Please excuse the spelling of the drugs. I due have vaginal dryness, dry eye, dry mouth and persistent neuropathy in my toes. I was very lucky to have the same Oncologist that I had 17 years ago. Together we beat this. Hang in there we can do this.

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Hi thank you for sharing your story and I’m so glad to hear you are doing well and fighting it, twice! Did you elect to do no surgery only drugs?

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@nataliehope

Hi thank you for sharing your story and I’m so glad to hear you are doing well and fighting it, twice! Did you elect to do no surgery only drugs?

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I had a mastectomy of the right breast and did all the drugs they proposed. I am due to have my reconstruction on August 19. I had total and complete trust in my Oncology team out of Valley Hospital in Ridgewood, NJ.

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Hello All, I am still battling HER2 + and HER2- at the same time the + appears to be responding to Herceptin and Perjeta. I started Piqray for the negative about 45 days ago & will know soon if it is getting the HER2 negative under control. Please let me know if anybody else has both a negative and a positive going on at the same time. Thanks

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I am now taking Arimidex.

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Unfortunately Arimidex did not work as well as I expected for me.

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@rraw

Unfortunately Arimidex did not work as well as I expected for me.

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I wish you every luck with your treatment and keep on fighting,💕💓

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I was just recently (July) diagnosed with both. My left breast tumor is HER2- but my lymph nodes are HER2+ I have a small cancerous lesion on my left pelvic bone. I am not sure what type it is yet. I just had my first round of (six scheduled) chemo treatments a week ago. I am taking Taxotere, Carboplatin, Herceptin, Perjeta and Neulasta. I will have surgery after I finish chemotherapy.

Liked by trixie1313

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