Topic: Looking for Her2 Positive survivor stories

Forum: HER2+ (Positive) Breast Cancer — Testing, treatment, side effects, and more.

Posted on: Nov 3, 2014 06:47AM

Posted on: Nov 3, 2014 06:47AM

Lovemyboysandlabs wrote:

Hello, I was dx in February with Her2+ BC. I went through the chemo, the mastectomy and now in the midst of radiation. I will finish that in December and will be on the Herceptin through March. 

I, like so many BC survivors, have a constant fear of metastisis. I can't shake it. I think what I need is to read stories of those with my type of BC that have survived for years with no recurrence. Please share your stories with those of us that are still in treatment or just finishing that are scared.

Thanks!

Dx 2/12/2014, IDC, Stage IIIA, Grade 3, ER-/PR-, HER2+ Targeted Therapy 3/2/2014 Herceptin (trastuzumab) Chemotherapy 3/2/2014 Carboplatin (Paraplatin), Taxotere (docetaxel) Radiation Therapy 10/14/2014 Breast, Lymph nodes
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Nov 13, 2021 12:17AM moonflwr912 wrote:

i am coming up on my 10 year anniversary of my bilateral mastectomy. Triple positive. Had 6 Herceptin treatments with my other chemo, had a few setbacks, such as kidney failure. They had to cut my chemo by 25 -30%. When I asked if it would still work, he told me I had to be alive for ANY of it to work! LOL, its all in the perspective. LOL that was not a fun time. After my first Herception only treatment, I had to stop, because my EF went down below 40. Perjeta was not available back then. My onco did tell me that herceptin was most important with the chemo, and at the time that helped me not lose my mind. Ive been on Anastrozole for 9 years, going on 10. I got used to the side effects . at 5 years I asked to stay on it longer, then there were studies that 10 years was better. Not sure I want to quit, its kinda like my crutch! LOL. Its only been 3 years since I went to 1x a year to see my onco, because I had so much going on before that. So 10 years, even with not having the full yreatments. Hang in there! Hugs to all.

Sometimes life SUCKS! Sometimes it doesn't. I prefer when it doesn't! If you're ever bored, read my biography. Bring snacks..... LOL Monica Dx 11/11/2011, DCIS, Right, 1cm, Stage 0, Grade 3, 0/2 nodes, ER+/PR+, HER2- Surgery 12/7/2011 Mastectomy; Mastectomy (Right); Prophylactic mastectomy; Prophylactic mastectomy (Left); Reconstruction (Left): Tissue Expander; Reconstruction (Right): Tissue Expander Dx 12/8/2011, IDC, 1cm, Stage IA, Grade 3, 0/2 nodes, ER+/PR+, HER2- Surgery 1/16/2012 Reconstruction (Left) Targeted Therapy 2/15/2012 Herceptin (trastuzumab) Chemotherapy 2/15/2012 Carboplatin (Paraplatin), Taxotere (docetaxel) Surgery 8/12/2012 Reconstruction (Left): Tissue Expander Hormonal Therapy 8/19/2012 Arimidex (anastrozole) Surgery 9/9/2012 Reconstruction (Left) Surgery 8/13/2013 Reconstruction (Left): Tissue Expander Surgery 9/3/2013 Reconstruction (Left) Surgery 12/12/2013 Reconstruction (Left): Saline implant; Reconstruction (Right): Saline implant
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Nov 13, 2021 05:27AM mcbaker wrote:

You were truly blessed.

I had a zoom visit with my oncologist yesterday. He has put me on a schedule of yearly visits already. We discussed my frustration with nerve damage in my feet, and should'a would'a could'a. He said that hormone negative breast cancer is very responsive to Taxol. But I had an episode of immune compromise, and one infusion was delayed by almost a week. At that point the Taxol could have been reduced and I wouldn't be dealing with as much nerve damage. He is comfortable with saying that because he is not the oncologist who brought me through the roughest part.

Mary Dx 10/3/2018, DCIS, Right, 6cm+, Stage 0, Grade 3, ER-/PR-, HER2+ Surgery 11/15/2018 Lymph node removal; Mastectomy; Mastectomy (Right); Reconstruction (Right): Tissue Expander Dx 11/16/2018, IDC, Right, <1, Stage IA, Grade 1, ER-/PR-, HER2+, IHC Targeted Therapy 12/18/2018 Herceptin (trastuzumab) Chemotherapy 12/19/2018 Taxol (paclitaxel) Chemotherapy 12/24/2018 Taxol (paclitaxel) Targeted Therapy 12/28/2018 Herceptin (trastuzumab) Surgery 6/27/2019 Reconstruction (Right): Fat grafting, Saline implant Chemotherapy
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Nov 21, 2021 03:29PM racheldog wrote:

For all the triple positives: since we cannot do Oncotype screening for HER2+ is there anyone who has found (or told by onc) what are our real risks of recurrance ? I mean a calculator for % if we choose to not specifically do any endocrine therapy? Anyone found anything? Predict only shows mortality.

This would be a question for the Triple Positive gals. I have done everything else but fighting going on AI drugs.

Dx 9/2020, IDC, Left, <1cm, Stage IA, Grade 3, ER+/PR+, HER2+ Radiation Therapy 6/1/2021 Whole breast Chemotherapy Other Surgery Lumpectomy; Lumpectomy (Left) Chemotherapy Chemotherapy Other
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Nov 21, 2021 03:35PM minustwo wrote:

Rachael - worry, I'm ER/PR negative. But I did confirm with my new oncologist last month that it's likely after FIVE years and all the treatment that I went through, that I won't have a recurrence of the 'same' cancer. Not to say that I can't have a new breast - but that sure made me feel good. Maybe not really justified, but...

2/15/11 BMX-DCIS 2SNB clear-TEs; 9/15/11-410gummies; 3/20/13 recurrance-5.5cm,mets to lymphs, Stage IIIB IDC ER/PRneg,HER2+; TCH/Perjeta/Neulasta x6; ALND 9/24/13 1/18 nodes 4.5cm; AC chemo 10/30/13 x3; herceptin again; Rads Feb2014
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Nov 21, 2021 04:09PM - edited Nov 21, 2021 04:18PM by smoothoperator78

racheldog- the Predict Calculator is very informative. https://breast.predict.nhs.uk/tool it is focused on overall survival, not recurrence

when I went for a second opinion, I was told 30% chance of recurrence if I only did surgery and nothing else.

Surgery 8/6/2021 Lumpectomy (Left); Lymph node removal (Left): Sentinel Chemotherapy 8/31/2021 Taxol (paclitaxel) Targeted Therapy 8/31/2021 translation missing: en.treatments.targeted_therapy.targeted_therapy_medicine.short_options.trazimera Radiation Therapy 12/8/2021 Whole breast, Radiation boost: Left breast Hormonal Therapy 1/26/2022 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Dx IDC, Left, 1cm, Stage IA, Grade 2, ER+/PR+, HER2+, ISH, IHC
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Nov 21, 2021 05:07PM mcbaker wrote:

The way my oncologist was talking, they have access to tables giving all that data. I have the same chances of getting breast cancer as any woman who has not had breast cancer. The only thing at that point that would reduce my chances of again being diagnosed with breast cancer would be to have lefty amputated. And my plastic surgeon probably has a story for the ages about a woman who asked, hypothetically speaking, if she were to have a grandchild who was in desperate need of her breast milk, would it be possible to re-lactate on that breast. (Answer, hypothetically, was yes.)

Mary Dx 10/3/2018, DCIS, Right, 6cm+, Stage 0, Grade 3, ER-/PR-, HER2+ Surgery 11/15/2018 Lymph node removal; Mastectomy; Mastectomy (Right); Reconstruction (Right): Tissue Expander Dx 11/16/2018, IDC, Right, <1, Stage IA, Grade 1, ER-/PR-, HER2+, IHC Targeted Therapy 12/18/2018 Herceptin (trastuzumab) Chemotherapy 12/19/2018 Taxol (paclitaxel) Chemotherapy 12/24/2018 Taxol (paclitaxel) Targeted Therapy 12/28/2018 Herceptin (trastuzumab) Surgery 6/27/2019 Reconstruction (Right): Fat grafting, Saline implant Chemotherapy
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Nov 22, 2021 08:43AM - edited Nov 22, 2021 08:44AM by 1982m

Racheldog- have you asked about neratnib or on it? I am worried I won't be able to complete tamoxifen, although planning to give it my best shot. I thought tolerating a year of neratnib as a back up plan, especially since it's shown the best benefit with HR/Her2 it would be a good idea to at least discuss. My med onc said it may be over treatment, but I'm a bit if a complicated case due to age and other features (strong family history, young age, palb2 of unknown significance) and was open to it. He sounded positive about it.

Perhaps that might be something to consider

Dx 7/13/2021, IDC/DCIS, Left, <1, Stage IA, Grade 2, ER+/PR+, HER2+, IHC
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Nov 22, 2021 08:51PM racheldog wrote:

1982M—that sounds a bit of overkill to me too plus I am in no hurry to take any more chemo or monoclonal antibodies. This whole year has been tough. I have another complication in that I need to have a knee replacement and I am hoping that can happen by February or March I do not want to be on either AI drugs or Tamoxifen and run the added risk of DVT. Or feel awful on these drugs while going through rehab. Or have more joint pain or ?

I will be 6 months out from last treatment by then and will need to be cleared to proceed with surgery. I am taking the risk of not starting these endocrine drugs but want to end this knee pain issue which at this point is keeping me from moving forward with exercise or anything else. What a dilemma. Deep down I still think these endocrine drugs do such horrible things to the body. I wish there was a true risk recurrence calculator for HER2





Dx 9/2020, IDC, Left, <1cm, Stage IA, Grade 3, ER+/PR+, HER2+ Radiation Therapy 6/1/2021 Whole breast Chemotherapy Other Surgery Lumpectomy; Lumpectomy (Left) Chemotherapy Chemotherapy Other
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Nov 22, 2021 10:03PM smoothoperator78 wrote:

closest thing I could find regarding rate of recurrence: https://www.cancernetwork.com/view/what-risk-recurrence-her2-positive-breast-cancer

For HR+/HER2+
10 year RFS: 73.8%
5 year hazard 10.9% with Herceptin

Interesting hazard ratios for years 6-10 depending on node involvement


original article: https://ascopubs.org/doi/full/10.1200/JCO.19.00443



Surgery 8/6/2021 Lumpectomy (Left); Lymph node removal (Left): Sentinel Chemotherapy 8/31/2021 Taxol (paclitaxel) Targeted Therapy 8/31/2021 translation missing: en.treatments.targeted_therapy.targeted_therapy_medicine.short_options.trazimera Radiation Therapy 12/8/2021 Whole breast, Radiation boost: Left breast Hormonal Therapy 1/26/2022 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Dx IDC, Left, 1cm, Stage IA, Grade 2, ER+/PR+, HER2+, ISH, IHC
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Nov 23, 2021 07:34AM racheldog wrote:

Thank you, that is an encouraging article from 2019. I am hoping the experts start to look at this kind of data instead of giving these endocrine drugs out as protocol to everyone that has node negative, early stage disease. I see my NP today and will ask again about any recent calculators as well. As I predict, they will not really have any answers besides telling women to go on AI drugs or Tamoxifen.

Dx 9/2020, IDC, Left, <1cm, Stage IA, Grade 3, ER+/PR+, HER2+ Radiation Therapy 6/1/2021 Whole breast Chemotherapy Other Surgery Lumpectomy; Lumpectomy (Left) Chemotherapy Chemotherapy Other

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