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

Posted by rraw @rraw, May 25, 2020

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.

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@michmom

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.

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@michmom
The pelvic bone lesion is something which I worry about (bone lesions in general)… at my age, so many places hurt. How did you discover it? What were your symptoms, if you don't mind me asking?

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@michmom

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.

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@michmom er
Oh my, you sure have a lot to deal with. I had two lesions in my breast but both were ER/PR+ and HER2- and was on taxotere and carboplatin, not all the extras you are receiving. Just recently though on PET scan a very small lesion was noted in my lung which they'll watch and do another PET scan in 3 months. Here's to all of your infusions going well. All the best to you.

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@michmom

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.

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WOW….. I hope you read my initial post. But just to quickly recap, I was diagnosed in April 2015 with HR+HER2- invasive ductile carcinomas. 2 surgeries/8 rounds of chemo/33 rounds of radiation and then declared NED until August 2019 when it came back in my chest. We thought it was negative & started Ibrance but about 30 days in we discovered it was HER2+…..& switched to Herceptin/Perjeta with a Faslodex shot. But in Jan 2020 we discovered lesions in my neck/spine that turned out to be HER2-. (My neck fractured… which resulted in 10 rounds of radiation & a very restrictive neck brace from 01/25-06/29)

It appears the + is responding well to Herceptin/Perjeta/Faslodex. The – is a bit more stubborn. I started Piqray in May, I am into round 3 of the Piqray and it appears it might be working 🙏🏽Scheduled to check my tumor marker again in about 3 weeks. If it’s going down we will stay with Herceptin/Perjeta/Faslodex/Piqray. I remain optimistic and faithful. This journey requires a positive attitude always…..otherwise cancer wins . Don’t give in….. Don’t give up….. Don’t give out!

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@rraw

WOW….. I hope you read my initial post. But just to quickly recap, I was diagnosed in April 2015 with HR+HER2- invasive ductile carcinomas. 2 surgeries/8 rounds of chemo/33 rounds of radiation and then declared NED until August 2019 when it came back in my chest. We thought it was negative & started Ibrance but about 30 days in we discovered it was HER2+…..& switched to Herceptin/Perjeta with a Faslodex shot. But in Jan 2020 we discovered lesions in my neck/spine that turned out to be HER2-. (My neck fractured… which resulted in 10 rounds of radiation & a very restrictive neck brace from 01/25-06/29)

It appears the + is responding well to Herceptin/Perjeta/Faslodex. The – is a bit more stubborn. I started Piqray in May, I am into round 3 of the Piqray and it appears it might be working 🙏🏽Scheduled to check my tumor marker again in about 3 weeks. If it’s going down we will stay with Herceptin/Perjeta/Faslodex/Piqray. I remain optimistic and faithful. This journey requires a positive attitude always…..otherwise cancer wins . Don’t give in….. Don’t give up….. Don’t give out!

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You can do this! Stay strong!

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My daughter was 23 when she was first diagnosed with HER2 negative breast cancer in Nov of 2018. Had a lumpectomy right away, followed 4 rounds of chemo and 30+ rounds of radiation. Then in April of this year 2021 she was diagnosed with HER2 positive, same breast, different area, and a bone biopsy determined it's stage 4 cancer. She's having chemo #6 next week (in addition to the immunotherapy – herceptin/projetta). We do not have a history of breast cancer in my family, and her genetic markers are negative for the breast cancer gene. It's really terrible, I wish so much this wasn't happening to her.

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I know your daughter is glad you are on her team. I was in my 30s with my initial diagnosis, and the conversations with my mom were the best. I know you both are going through it right now so if I can offer support please let me know. The good news is with immunotherapies we are living longer with MBC. I read an article in the last few days talking about someone who was over 6 years out. To me that is hope. Is your daughter confident with her medical team? Does your daughter have children who would be concerned about genetics?

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@rkuhn

My daughter was 23 when she was first diagnosed with HER2 negative breast cancer in Nov of 2018. Had a lumpectomy right away, followed 4 rounds of chemo and 30+ rounds of radiation. Then in April of this year 2021 she was diagnosed with HER2 positive, same breast, different area, and a bone biopsy determined it's stage 4 cancer. She's having chemo #6 next week (in addition to the immunotherapy – herceptin/projetta). We do not have a history of breast cancer in my family, and her genetic markers are negative for the breast cancer gene. It's really terrible, I wish so much this wasn't happening to her.

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My heart goes out to you. My daughter was diagnosed in February age (42) with HER negative, ER/PR +. She decided on a double mastectomy with reconstruction. As a mother it is so hard to accept that your "baby girl" has to go through this. I read all the time about breast cancer and treatments to educate myself so I can feel more in control. It helps me cope. I have learned through all the reading that there is hope with all the treatments available. Everyone is different and there are miracles out there too! Keep the faith and I will pray for you mama. It's hard.

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@auksst

My heart goes out to you. My daughter was diagnosed in February age (42) with HER negative, ER/PR +. She decided on a double mastectomy with reconstruction. As a mother it is so hard to accept that your "baby girl" has to go through this. I read all the time about breast cancer and treatments to educate myself so I can feel more in control. It helps me cope. I have learned through all the reading that there is hope with all the treatments available. Everyone is different and there are miracles out there too! Keep the faith and I will pray for you mama. It's hard.

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Your daughter's diagnosis was exactly what my daughter's was almost 3 years ago. It seem like things are "out of order" for our daughters to have breast cancer. She really hopes to have children someday, but with the stage 4 diagnosis I'm not sure that'll be possible. I guess I'm the reverse, I can't research too much because of her staging, which gives her 3-5 years. Only God knows her last day here on earth, I'm so glad I don't know it, but I struggle immensely with her diagnosis. I have 4 younger children (ages 10-16) who are watching her go through this. I'm definitely praying for a miracle, they do still happen. I had a friend encourage me to find a support group for Moms with children who have cancer and I've not found one in my area (or they all meet remotely, which I don't want to do).

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@auntieoakley

I know your daughter is glad you are on her team. I was in my 30s with my initial diagnosis, and the conversations with my mom were the best. I know you both are going through it right now so if I can offer support please let me know. The good news is with immunotherapies we are living longer with MBC. I read an article in the last few days talking about someone who was over 6 years out. To me that is hope. Is your daughter confident with her medical team? Does your daughter have children who would be concerned about genetics?

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She does have a good team of doctors. I agree, treatments change and get better, but I want to be realistic and not think that I have time with her that I don't. She's not going to live a long life, she won't have children, and it breaks my heart. When she was little, I was a single mom, and we were SO close as she was growing up. She doesn't have the breast cancer gene, there isn't a history in my family. There are times I just really struggle with her reality and as her initial diagnosis date approaches, it gets harder (though I don't let her know).

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