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Topic: Just Diagnosed with HER 2+

Forum: HER2+ (Positive) Breast Cancer —

Testing, treatment, side effects, and more.

Posted on: Jul 13, 2021 04:56PM

verosun wrote:

Hello,

Diagnosed with Stage 3 Grade C HER 2+ breast cancer. I am currently going through neoadjuvant chemo, Taxotere, paraplatin and herceptin/perjeta treatment. I never missed my mammogram appointments but unfortunately I found an axillary lump months after my normal 3-D Mammogram. I became very fearful with this type of cancer because it moved so fast. At my diagnosis all I heard was Cancer. I am now trying to understand my cancer and wanting to join a community. I am receiving treatment in a smaller cancer center. I am on treatment #4 and I was wondering if your MO has done any progression scans. I asked my MO and he said he would do a Breast MRI after my 5th treatment. I have become somewhat obsessed with reading about statistics, prognosis, recurrence that maybe it might be affecting my mental well-being but I know I need to understand my cancer to advocate for myself. Right now I am struggling with my mental well-being. I know some of you are going, have gone through this mental rollercoaster. I have read some posts and you have helped me learn and have helped with the mental piece. I wanted to say Hello to all of you and if you have any tips for me I would really appreciate it . :)

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Jul 13, 2021 05:56PM AlwaysMeC wrote:

We may be on a similar schedule. I just completed my fourth session of TCHP July 3rd. My MO hasn't ordered any progression scans, however I am getting another MUGA heart ultrasound this Thursday to check the effects of HP on my heart. I am supposed to get one every three months until treatment is done.

My breast surgeon also already ordered an untrasound and MRI to be done after TCHP is done.

You probably already know, but in case you didn't, don't read any reaearch/articles for HER2 older than five or six years. The outcomes in newer research with the newer treatments and data are better. A lot of the older stuff will have data from the late 90's through mid to late 2000s. I also don't really hold much weight on the retrospective studies because the data isn't analyzed in real time, so researchers aren't able to get a clear picture of what is going on when they find something questionable.

Dx 4/2/2021, IDC, Left, 1cm, Stage IIA, Grade 2, ER-/PR-, HER2+ (FISH)
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Jul 13, 2021 05:57PM Aram wrote:

Hi verosun, I am sorry you are here with us. Her2+ is aggressive but all the doctors I have seen so far were really happy to see it as it opens targeted therapies with great success rates.

One great thing I have learnt from BCO community members is not to go to "what ifs". I still fail sometimes and go into Google rabbit hole but most of the time I can remind myself to live with what I know at the moment.

Dx at 40, BRCA1 Dx 2/5/2021, IDC, Left, 1cm, Grade 3, ER-/PR-, HER2+ (IHC) Dx 2/5/2021, IDC, Left, 3cm, Grade 3, ER-/PR-, HER2+ (IHC) Chemotherapy 3/10/2021 AC + T (Taxol) Targeted Therapy 6/2/2021 Perjeta (pertuzumab) Targeted Therapy 6/2/2021 Herceptin (trastuzumab)
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Jul 13, 2021 06:07PM verosun wrote:

Yes it sounds like we are on a similar schedule. Thank you for the tips! I think I am making myself crazy with so much worry.


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Jul 13, 2021 06:53PM Melbo wrote:

Her2+ cancer is considered aggressive, but it’s also considered very treatable with a high likelihood of a good outcome, especially if you are responding well and can tolerate the chemo and herceptin/Perjeta combo. I had TCHP last year (finished chemo at the end of November and still have two infusions of herceptin and Perjeta left to go) and was told that since I had a complete response to chemo there was a 95% chance that this cancer wouldn’t come back. Nothing is truly guaranteed of course, but that’s a pretty good statistic.

I had a repeat ultrasound after I finished chemo, but the only other scans I have had were to rule out Mets since I was having some side effects from the herceptin/Perjeta. I ended up getting a brain MRI and a liver ultrasound, but both were clear and my symptoms were from the medications. (Also, my oncologist was confident I didn’t have Mets, he was just ruling them out to be thorough and he knew it would make me feel better.)

it does get better as you get closer to finishing treatment. I had some scary months when I was worried about mets, but now that I have had clear scans and my symptoms have never gotten worse, I’m just looking forward to finishing treatment and hopefully putting cancer behind me.

Diagnosed right before my 42nd birthday. One husband, two dogs, one cat and no kids. Dx 7/16/2020, IDC, Left, 2cm, Stage IIA, Grade 3, 1/7 nodes, ER-/PR-, HER2+ Targeted Therapy 8/7/2020 Herceptin (trastuzumab) Targeted Therapy 8/7/2020 Perjeta (pertuzumab) Chemotherapy 8/7/2020 Carboplatin (Paraplatin), Taxotere (docetaxel) Surgery 12/20/2020 Lumpectomy: Left; Lymph node removal: Sentinel; Reconstruction (left); Reconstruction (right) Radiation Therapy 1/31/2021 Whole-breast: Breast, Lymph nodes
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Jul 13, 2021 06:56PM DutchieGirl wrote:

Hello Verosun. I also had a mammogram shortly before I found my lump. I’m convinced that I already had BC when I went for my mammo - I lost 10 pounds without trying a few months before my mammo (it’s one of the reasons my GP ordered the mammo). Apparently I had extreme dense breast tissue - I should have asked for a breast MRI.

With regard to Her2+, I’m actually glad I had it as we have herceptin. I don’t pay any attention to the stats for my type and stage any more. Everyone is different. My mom had Stage 3c lobular cancer with 13 positive nodes in 1998. Her tumour was 7cm. She turns 81 next month. Statistically she probably shouldn’t be here but she has never had a metastases.

I wish you all the best with your treatment!

Lori-Anne Dx 11/7/2018, IDC, Left, 1cm, Stage IIIA, ER-/PR-, HER2+ Surgery 1/14/2019 Lymph node removal: Left, Underarm/Axillary; Mastectomy: Left, Right; Prophylactic mastectomy: Right Chemotherapy 3/4/2019 AC + T (Taxol) Radiation Therapy 7/29/2019 Targeted Therapy Herceptin (trastuzumab)
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Jul 18, 2021 12:29AM Racheldog wrote:

I had a small HER2+ tumor and had surgery, port placed, Kadcyla (only made it through 4 treatments due to SE), radiation finished, and now to start Herceptin. I am really spooked by starting Herceptin ---even as monotherapy. Can you all tell me how you did on Herceptin? Any fever, illness, rash or worse lung issues? The Kadcyla experience scared me and although everyone seems to say that Herceptin by itself is not bad I am still worried. I live alone. I asked the oncologist to run the first one over 2 hours and she agreed. Any input appreciated?

Dx 9/2020, IDC, Left, <1cm, Stage IB, Grade 3, ER+/PR+, HER2+ (IHC) Radiation Therapy Whole-breast Chemotherapy Other Surgery Lumpectomy: Left
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Jul 18, 2021 12:52AM verosun wrote:

Hello,

I’ve had 4 treatments of herceptin/ perjeta w tax/para and I developed a rash to scalp and some diarrhea. The rash was like folliculitis and affected me at first but has minimized with each treatment. Not sure if it’s from the herceptin or one of the other treatments.

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Jul 18, 2021 07:42AM Melbo wrote:

Rachel dog — I have been on just herceptin and Perjeta since December after finishing my chemo. My side effects are very mild compared to the chemo, but I also had a relatively easy time with the chemo with no major scary side effects.

With just the H&P I have diarrhea, which is controlled by immodium. I get randomly itchy all over my body, which seems to be triggered when I get too warm, but doesn’t cause a rash or anything. The most annoying thing is the hardest to describe — I randomly just feel “icky” — overly warm, lightheaded, and uncomfortable in my skin. Lastly I have recently noticed some very mild numbness/tingling in my fingers/hands. All of these things have fallen into the annoying, but not scary range

The lightheadedness pushed me to get a brain MRI, which was clear. I had a liver ultrasound because my ALK Phosphatase in my bloodwork has been consistently elevated since February— turns out chemo caused a fatty liver.

It’s a little unclear how many of my symptoms are caused by the H&P and how many are from the fatty liver. Either way though. I have my infusions given over 60 minutes each instead of 30 and I will be glad to finish so I can hopefully get back to normal. Whatever that looks like after cancer.

Good luck with the herceptin!

Diagnosed right before my 42nd birthday. One husband, two dogs, one cat and no kids. Dx 7/16/2020, IDC, Left, 2cm, Stage IIA, Grade 3, 1/7 nodes, ER-/PR-, HER2+ Targeted Therapy 8/7/2020 Herceptin (trastuzumab) Targeted Therapy 8/7/2020 Perjeta (pertuzumab) Chemotherapy 8/7/2020 Carboplatin (Paraplatin), Taxotere (docetaxel) Surgery 12/20/2020 Lumpectomy: Left; Lymph node removal: Sentinel; Reconstruction (left); Reconstruction (right) Radiation Therapy 1/31/2021 Whole-breast: Breast, Lymph nodes
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Jul 20, 2021 01:33PM SWLovesHerDog wrote:

I am at the point that I need to start deciding if I'm going to do Cold Capping during my chemo or wear a wig. I'd really like to know if others out have the same diagnosis and chose to do Cold Capping? Also, what have their experiences been?

I have been diagnosed with HER-2 positive left breast cancer. It is only 1.5 cm, with no lymph nodes involved. I will be doing limited chemotherapy—12 weeks of weekly paclitaxel, with trastuzumab given every 3 weeks to complete 1 year of therapy.

I had the following surgeries:

Mastectomy and EXPANDER RECONSTRUCTION (Performed 6/24/2021) left breast, estrogen receptor-positive

BIOPSY SENTINEL LYMPH NODE (Performed 6/24/2021)

Performed for Malignant neoplasm of upper-outer quadrant of the left breast in female, estrogen receptor-positive

LEFT NIPPLE SPARING MASTECTOMY (Performed 6/24/2021)

Performed for Malignant neoplasm of upper-outer quadrant of the left breast in female, estrogen receptor-positive

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Jul 20, 2021 03:27PM - edited Jul 20, 2021 03:29PM by MochiPie

SWLovesHerDog, why I didn't cold cap:

  • My hair is naturally fine and on the thinner side. With any amount of hair loss even while cold capping, it would have looked shitty
  • The caps are frigid. I had chemo in winter in New England
  • I was icing hands and feet throughout Taxol infusions, to stave off neuropathy and nail loss. That was enough cold things for me
  • If you cold cap, you have to bring in the stuff yourself, AFAIK nurses don't help you, and it extends your time in the chair. During COVID we were not allowed to have anyone with us and I would have had to carry everything
  • It's out of pocket, or if it is reimbursed they won't also reimburse you for a wig. I got the fancy wig (which I didn't wear much at all)
  • It's not guaranteed, so if it fails you have paid for it, suffered through it, etc., for nothing
  • You have to really baby your hair during treatment in terms of no heat styling, barely any washing, etc.
  • Once in a lifetime chance to shave my head without being seen as eccentric
  • Opportunity to prove to myself that I could handle this diagnosis like a badass, including baldness


Why I considered cold capping:

  • HAIR LOSS ANXIETY. I saw a mental health counselor for this. When I shaved my head prior to losing hair, I ended up being totally fine with it. There were some down moments but overall it wasn't at all what my brain thought it would be
  • Hair grows back faster, even if you cold cap and lose some of it
  • Blending in with healthy people, though with my colored wigs I received compliments and in winter I wore a lot of hats anyway


I had a blast with costume colored wigs and I'm enjoying all of the stages of regrowth, even the dreaded chemo curl!

Dx 11/3/2020, IDC, Right, <1cm, Stage IA, Grade 3, 0/2 nodes, ER-/PR-, HER2+ (IHC) Surgery 11/10/2020 Lumpectomy: Right Targeted Therapy 12/8/2020 Herceptin (trastuzumab) Chemotherapy 12/8/2020 Taxol (paclitaxel) Radiation Therapy 3/21/2021 Whole-breast: Breast
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Jul 20, 2021 03:28PM Melbo wrote:

I didn’t cold cap or wear a wig — I just rocked the bald head and let everyone think what they want. I thought I would hate it and that I would end up buying a wig, but it was fine. Yes I got a few more looks than usual, but no one said anything to me or caused me to be uncomfortable. But your mileage will vary and some people are horrified by the idea of just going bald.

I think there are a couple of cold capping threads you could check out for more information

Diagnosed right before my 42nd birthday. One husband, two dogs, one cat and no kids. Dx 7/16/2020, IDC, Left, 2cm, Stage IIA, Grade 3, 1/7 nodes, ER-/PR-, HER2+ Targeted Therapy 8/7/2020 Herceptin (trastuzumab) Targeted Therapy 8/7/2020 Perjeta (pertuzumab) Chemotherapy 8/7/2020 Carboplatin (Paraplatin), Taxotere (docetaxel) Surgery 12/20/2020 Lumpectomy: Left; Lymph node removal: Sentinel; Reconstruction (left); Reconstruction (right) Radiation Therapy 1/31/2021 Whole-breast: Breast, Lymph nodes
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Jul 20, 2021 04:26PM Olma61 wrote:

I did ice hands and feet but I decided not to cold cap due to the expense, the hassle and the anticipated discomfort of sitting three hours in the chair with ice on my head.

I did wear wigs and loved them. And I still wear them, now that I’ve been inducted into the wig sisterhood.

Good luck with your treatment!


10/30/2017 Xgeva for bone mets 5/31/2018 Taxol finished! "If one just keeps on walking, everything will be all right” - Kierkegaard Dx 8/3/2017, IDC, Right, 2cm, Stage IV, metastasized to bone, Grade 2, ER+/PR+, HER2+ (IHC) Targeted Therapy 10/28/2017 Perjeta (pertuzumab) Targeted Therapy 10/28/2017 Herceptin (trastuzumab) Chemotherapy 10/30/2017 Taxol (paclitaxel) Hormonal Therapy 5/14/2018 Arimidex (anastrozole) Radiation Therapy 5/30/2019 External: Bone
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Jul 28, 2021 05:33PM Christinag53 wrote:

Sorry to hear about your diagnosis. The mental part of being diagnosed was the worst part for me to deal with. I ended up asking my primary care dr for anxiety meds. She put me on Prozac and once that kicked in (2 weeks) I felt so much better. I knew I could handle this. Chemo sucked but it was doable. I exercised everyday. Even if it was just walking for 20 minutes. I also did acupuncture once a week to minimize side effects. My doctors kept telling me I didn’t look like I was even going through chemo. I bought a human hair wig and had it dyed to match my real hair. Everyone that knows me has said they would never know it was wig unless I told them. I know a wig isn’t for everyone but it helps me mentally to see myself in the mirror looking the same as I always did. The mental part was such a struggle and I knew if I could get over that I would be able to fight. I ended up having a complete pathological response to the chemo. Still getting kanjinti and perjeta every 3 weeks to complete one year of treatment. It’s not an easy road but if I can do this anyone can! I truly believe if you can get over the mental part you can totally beat this!!

Dx 10/2016, DCIS, Right, Stage 0, Grade 2, ER+/PR+ Dx 1/6/2021, IDC, Left, 1cm, Stage IA, Grade 3, ER-/PR-, HER2+

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