Neoadjuvant TCHP ER+ PR- HR2+++

Options
NTS
NTS Member Posts: 20
edited November 2017 in IDC (Invasive Ductal Carcinoma)

I've been lurking on these boards since my dx in June, but this is my first time posting. I'm still trying to figure out for sure how to complete the signature, but here are my stats:

Dx: June 2017, IDC , ER+++ (100%) PR -, HER2 +++ KI67: 10, Grade 2, Age at diagnosis: 31

3.8 CM mass in left breast, 2.5 MM in sentinel node

Neoadjuvant TCHP 6 rounds every 3 weeks (started in June and completed in Oct)

Because of delays with insurance approval, I didn't have a body or bone scan until halfway through treatment. At that time it showed the tumor shrunk to 2.6 CM, no organ mets, bone scan lit up in a few places but MO assured me it's the neulasta.

First of November (last week) I had lumpectomy and axillary node dissection. I'm still waiting for pathology, but I did have an MRI prior to surgery that showed tumor was 2.5 CM (barely a change since 3 treatments prior) with a "swiss cheese effect" and nothing in lymph nodes, but I know pathology has the final say.

I'm feeling a little defeated about the lack of downsizing after 3 treatments. I also have had an ongoing mild headache across my forehead for weeks. My mildly-imperfect vision has gotten to the point that I have to wear glasses 24/7 now, otherwise everything is quite blurry. I'm terrified of brain mets and I'm upset my MO didn't order a brain scan at the beginning. I told her weeks ago about the headaches, but she wasn't concerned since they weren't severe. Her take was that I was just reacting to the chemo. It's been almost 4 weeks since the last chemo and I still have them. I'm very much second guessing the neoadjuvant route, even though 3 dr's told me it is the way they would treat it. I'm getting a brain MRI this week but I'm so nervous. Has anyone else had ER+ and HER2+ that got TCHP with success? I don't see many other posts on here where the individual was BOTH ER+ and Her2+.

· Share on FacebookShare on Twitter

Comments

  • SpecialK
    SpecialK Member Posts: 16,486
    edited November 2017

    Check the triple positive thread - there are a bunch of folks there who have had neo TCHP you can check in with. Herceptin caused me a low grade, but pretty persistent headache, even when I received it after chemo was done, that could be the issue for you too.

    https://community.breastcancer.org/forum/80/topics/764183?page=1127#idx_33807

    · Share on FacebookShare on Twitter
  • illimae
    illimae Member Posts: 5,710
    edited November 2017

    NTS, I'm ER+/HR-/HER2+, diagnosed last year at 41. I had terrible allergic reactions to Taxotere, then Taxol, so I had my Herceptin and Perjeta with Abraxane. I had good shrinkage halfway through but by the end, the lump was just scattered cells. I did have a metastatic lesion on my hip bone and chemo helped that too, surgery and radiation did the rest.

    Did you get full body scans and brain MRI initially?

    I will say that Abraxane did give me blurry vision towards the end of it which were unrelated to the tiny brain lesions discovered months later via MRI after a 5 day migraine, also unrelated but lucky. Some random cancel cell must have made its way into my head before chemo but was too small to detect, just zapped those with gamma knife and the rest of me is good.

    · Share on FacebookShare on Twitter
  • Moderators
    Moderators Member Posts: 25,912
    edited November 2017

    Hi NTS-

    We're so sorry you find yourself here, but we're glad you decided to join in the conversation. Have you checked out our HER2+ forum? There might be some info there that's helpful to you: https://community.breastcancer.org/forum/80

    Also, if you need help filling out your diagnosis and treatment info, please don't hesitate to send us a pm and we can help you through it.

    The Mods

    · Share on FacebookShare on Twitter
  • NTS
    NTS Member Posts: 20
    edited November 2017

    illimae - no, I didn't have any scans prior to starting treatment. I was supposed to have a pet scan and bone scan, but insurance was being difficult. It ended up being after 3 tchp treatments that I was approved for and had a ct scan and bone scan. A brain scan was never ordered, which I don't understand because I'm now seeing all this info about how her2 likes to travel to the brain.

    Can you explain more about how you "zapped them with the gamma knife"? I'm still learning so I'm not totally sure what that means (you're able to destroy some brain mets?)

    · Share on FacebookShare on Twitter
  • NotVeryBrave
    NotVeryBrave Member Posts: 1,287
    edited November 2017

    I was diagnosed triple positive almost a year ago. I couldn't feel the 2.8 cm lump after the first round of chemo and none was found on the final pathology report. But my understanding is that sometimes the tumor sort of disintegrates and leaves that "Swiss cheese" appearance. I'm hoping that what remains for you is all dead and a little like scar tissue or something.

    I never had any scans done which worried me because there were two enlarged axilliary nodes in the beginning - one was biopsied and came back negative, but the radiologist considered that "discordant" on his report. My MO didn't feel that repeat biopsy or scans were necessary since the plan would be NAC for HER2+ anyway.

    I did have a pretty bad headache that went on for about two weeks or so somewhere around round two. I had the same kind of worries that you have. I have a history of migraines, but this seemed different. The problem is that with cancer - everything becomes "maybe it's cancer" and some other possibilities get overlooked. Are you well hydrated? How is your blood sugar? Are you anemic? Is it stress? Unfortunately, there are so many things that can cause or contribute to headaches.

    I also noticed a big difference in my vision during chemo. It would be much, much worse for the first few days after infusion. Even now, it seems really bad sometimes. I have an appointment with an ophthalmologist this week, but I wonder if I should have just waited until the year of Herceptin was complete. The fluctuations in vision have me wondering if it is contributing to that.

    Don't second guess the NAC of TCHP. Or any treatment that you do, really. We all try to make the best decisions we can with the information that we have at the time. Even if you end up not getting the result you had hoped - it has made a difference in that tumor. And hopefully throughout your body.


    · Share on FacebookShare on Twitter
  • illimae
    illimae Member Posts: 5,710
    edited November 2017

    Hopefully, you won't have to deal with brain mets ever but yes, HER2+ comes with a higher rate of brain mets. Gamma knife is focused radiation (like 5 beams on one spot coming from different directions) to the lesions usually 1-4 but mine were very small and the neuro docs thought one more could be easily treated that way. I will say though that vision changes and headaches can be caused by the chemo but for us, everything is suspect.

    · Share on FacebookShare on Twitter

Categories