Who else is HER2 positive?

Posted by zeerj @zeerj, Oct 9, 2022

Anyone here with her2 positive diagnosis? I was diagnosed with stage 2 back in April, did 6 chemo, bilateral mastectomy and will be doing radiation. Will start TDM1 treatment for 14 cycles. I am looking for success stories with people in similar situation.

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Profile picture for regina59 @regina59

P.S. I am eighty-five and thriving

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Your experience fills me with hope. I am 81 and may start on the Taxol/Herceptin part of the treatment, but am waiting for definitive HER2 diagnosis from Mayo (a second opinion). I'm assuming it will confirm the HER2+, but have a smidgen of hope that it might not. Had a lumpectomy 3 weeks ago. I am otherwise healthy, but had DCIS - lumpectomy/radiation/Tamoxifen - in 2010.

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I am HER2 positive and on round 5 of chemo; plan is lumpectomy after chemo, radiation after surgery, oral chemo for a few months. I'm in hell with the chemo side effects; those HER2 targeted drugs have awful side effects. I can hardly walk up the stairs now; but on a positive note, the 9 cm mass in my breast is shrinking -- doctor could feel the difference just with her hand. Good luck.

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I was HER2 positive at 79. I had a lumpectomy, chemo with Taxol and Herceptin, plus 6 weeks of radiation.
I'm now 82 and recently had my 6 mos. check up with the oncologist. He looked at my blood work and said he didn't expect my cancer to come back.
I had a horrible first 2 weeks with the chemo, but after the Taxol was reduced by 20 percent, I pretty much sailed through it.
I read of an an oncologist who said if she had breast cancer she would want it to be HER2 positive because with Herceptin (made from vinca) it is the easiest type to put in remission.

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My friend is diagnosed with Her2 positive size of a grape and was going to start with chemo then do surgery but during the contrast MRI they noticed another abnormal area and biopsied it. She also has DCIS in the same breast- lime size.
So she had to have a mastectomy which was Thursday. The plan is to start chemo when she’s healed enough. She’s 54. They did say the stage of cancer could change with the pathology. So praying it stays just the HER2 Positive and DCIS.

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Profile picture for turbomom @turbomom

Your experience fills me with hope. I am 81 and may start on the Taxol/Herceptin part of the treatment, but am waiting for definitive HER2 diagnosis from Mayo (a second opinion). I'm assuming it will confirm the HER2+, but have a smidgen of hope that it might not. Had a lumpectomy 3 weeks ago. I am otherwise healthy, but had DCIS - lumpectomy/radiation/Tamoxifen - in 2010.

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Hi @turbomom (love the username!), how are you doing? Have you started treatment in the meantime?

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Profile picture for Colleen Young, Connect Director @colleenyoung

Hi @turbomom (love the username!), how are you doing? Have you started treatment in the meantime?

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Just saw my oncologist this morning and got the plan. Should start with Taxol and Herceptin in a couple weeks, after port placement, echo, and education lecture.
(Turbo is our tuxedo cat - moves very fast and has a loud engine!)

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Profile picture for maggieb892 @maggieb892

My margins were very small and a risk that the cancer wasn't all gone. I had small dosages of radiation daily, and was able to maintain my skin integrity. I had few side effects, at the time. There is a risk of thyroid issues later, but I thought it was worth it.

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Hi there

Were you HER2 positive? I was. I had TCHP first, then surgery, then kadcyla b/c of 6 mm of residual. My smallest margin was 1 mm which MAYO said was a clear margin. I pushed to have radiation but was declined by both the surgeon and radiation oncologist. They said I had clear margins. Would you mind sharing what your margins were? I had a SMX, no radiation b/c of the SMX and stage 1 - 18 mm. ER 95% and PR 10-20%.

THank you so much.

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Profile picture for love66 @love66

Hi there

Were you HER2 positive? I was. I had TCHP first, then surgery, then kadcyla b/c of 6 mm of residual. My smallest margin was 1 mm which MAYO said was a clear margin. I pushed to have radiation but was declined by both the surgeon and radiation oncologist. They said I had clear margins. Would you mind sharing what your margins were? I had a SMX, no radiation b/c of the SMX and stage 1 - 18 mm. ER 95% and PR 10-20%.

THank you so much.

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My cancer was invasive lobular HER2 also. My margins were .8 mm post surgery. I started with 12 Paclotaxel infusions with 4 phesgo injections. Then surgery Then radiation followed by kadcyla over 42 weeks

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Profile picture for chrisoula @chrisoula

I was diagnosed with stage 3B HER2 positive breast cancer last year these days. I did mastectomy and found a 4cm tumor and removed 21 lymph nodes (9 of them were affected), I was very lucky and I kept the nipple. Then I did chemotherapy weekly (for 22 weeks), alongside I did immunotherapy with trastuzumab+pertuzumab. After all of these I had radiation therapy every day for 25 sessions and now continuing with immunotherapy (every 3 weeks) till is a full year since I begun. I've been doing every 3 months examinations (mostly mammograms, ultra sounds in the abdoment and breasts and chest), every 6 months we add a brain MRI and CT scans of the abdomen and a bone density measurement. So far my examinations are cancer free!!! I've been struggling with anxiety, depression and insomnia since last February. But with a little help from my friend Chemistry I'm better (antidepressants and other)! I realised that my case was serious and that I had to fight with all my heart and brain! I can say now that I am very optimistic and believe that I will be a positive case and cancer free for the years to come! I have a lot of things to do in life and I will do all of them!!! Hope I helped you and cheered you up! I wish you well and be healthy for the years coming!!! 😊🤞

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@chrisoula hi there. I was diagnosed today with category 5 …stage 3. 4cm in size in breast. Thankyou for sharing your journey. I have 7 grandchildren, two live in NSW and I am in Victoria Australia. My saddest thoughts is wondering if I will be well enough to travel. Jest a rough road you had travelled but I like to know what I am on for so I can mentally prepare. So sounds like a year of hell coming
Did you have dizziness before diagnosis. …I have also not felt like food for last couple of weeks prior to even going for scans etc. oh and the last few months I have felt completely drained and napped on the couch most days midd arvo…maybe that a Grammy thing at 55 hahahaha. Thanks again

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