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ER-, PR-, Her2+ Roll call

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  • grammie2
    grammie2 Member Posts: 102
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    @djschmidt1 thank you!! I was concerned about the platelet count as it was normal range before chemo started. And yes, I go back tomorrow for fluids and bloodwork again so I'm planning on asking them about the mouthwash. Thanks for the info!!!

  • bailey.boo
    bailey.boo Member Posts: 131
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    Hi everyone. I wanted to introduce myself. I recently received my pathology report from my first biopsies confirming that I have IDC that is negative for estrogen receptor (ER) and progesterone receptor (PR), but positive for HER2. (There’s some lymph node scariness in there to figure out aside from that.)

    I’m right at the beginning of this thing, with my first oncology appt on Monday. I have no idea about grade, stage, subtype, etc. yet. I want to learn as much as I can about treatment options. 

    If anyone has advice or experiences to share, I would love to hear from you. I had a lot of big plans this year, and I’m trying to figure out if I need a reality check and a back-burner.

    Sending positive vibes to all ❤️

  • grammie2
    grammie2 Member Posts: 102
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    @bailey.boo Sorry you are going through this as well but glad you found this group. They have been so helpful to me. I too have ER and PR - and Her2+, IDC, node positive. They staged me at IIB, grade 3. After biopsies, I met with a surgeon who ordered several scans (PET and MRI), chemo port placement. She referred me to my Onc. Mine is chemo first, surgery, then radiation. My chemo is TCHP, taxatore, carboplatin, herceptin and perjeta. 6 total treatments one every three weeks. I just had my first one on 4/18. So I'm fairly new in the game as well, but thought I'd share. Feel free to ask anything!!

  • djschmidt1
    djschmidt1 Member Posts: 46
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    hello @bailey.boo welcome to this group. It’s a club that none of us wanted to join but we have each other. Im sorry you are dealing with this. @grammie2 and I are on the same path except I’m one chemo treatment away from being done with this phase. Ask us anything.

    So many dear ladies in this group have walked all the roads and offer such great advice. We’re here for you. ❤️

  • grammie2
    grammie2 Member Posts: 102
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    @djschmidt1 when I went for the treatment, I assumed that herceptin and perjeta would be two different IV drips. Mine was combined in a syringe that was injected to the thigh muscle. Is yours a one shot thing as well?

  • bailey.boo
    bailey.boo Member Posts: 131
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    thanks, @grammie2. Your info is so helpful. It’s the little things you learn along the way— those tiny jarring things that add up and knock you off guard at appts— and I appreciate getting to digest them in chunks like this beforehand— such as, I didn’t event consider that I might need to get a port, although that makes good sense once I thought about it. Having a heads up on the possible chemo names helps too. It gives me a chance to learn, and when I go to my appt on Monday, I’ll be that much less frazzled by everything I hear and armed with some good questions to ask up front. I hope you’re feeling ok after that first course of chemo ❤️

  • bailey.boo
    bailey.boo Member Posts: 131
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    Hi @djschmidt1. Thank you. I’ll probably come back after my first oncology appt on Monday with many questions!

  • djschmidt1
    djschmidt1 Member Posts: 46
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    @grammie2 my Perjeta and Herceptin are done via IV. Interesting that they give you injections of them. I don’t know which I’d prefer…

  • grammie2
    grammie2 Member Posts: 102
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    @djschmidt1 from what I read, those two drugs are made by the same company and they created this version as well. When I asked the nurse, she commented about the muscle being a good way to deliver the drug into the body. If I remember correctly from what I read, it was FDA approved in 2018. Gonna do some research on this.

  • grammie2
    grammie2 Member Posts: 102
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    @djschmidt1 another question for you. Did you find that you had the same SE's throughout each treatment or did yours vary? From things I've read about TCHP, I really feel my symptoms were on the mild side after my first. I did have the hot face flushing the night of and the next day and then just red for a couple more days. I had mind fogginess for the first four days or so, tummy felt blah day 6-7 but not really nausea, couple of D episodes and took meds (ate carefully after that). Mouth sores were bad, but the magic mouthwash fixed that in two days. I plan to eat more fiber the day before and day of chemo this time to help with constipation and maybe switch to low fiber around day 4-5 to see if that helps the tummy. I worked remotely the day after and two days the following week. Then went into the office. Of course I had appts for fluids 1/2 days two days. I was def. more tired at the end of the day and didn't do a lot at home. Any pointers? Told my small group at church today that our prayers were answered and that we needed to do a repeat of prayers for the next treatment!!

  • djschmidt1
    djschmidt1 Member Posts: 46
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    @grammie2 of course everyone is different and I can honestly say yes my SEs changed each time, sometimes each day…mine have definitely increased each time as well. Always something different, skin issues, neuropathy, muscle pain, constipation, diarrhea, and the strongest is increasing fatigue. I’m really hopping you sail through, some do. I tend to not take many meds but I get the odd side effects on everything because I’m very sensitive to drugs/meds. I know it’s not great news but you may be completely different.

  • grammie2
    grammie2 Member Posts: 102
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    @djschmidt1 that's good to know either way. Thanks! I'm the same on not taking meds and being sensitive to them. I think that's why I felt so out of it for the first 3-4 days. That's a lot of drugs in one day LOL. I'll stay prepared for any and all. Ugh. I know you are ready to get that last one over!

  • bailey.boo
    bailey.boo Member Posts: 131
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    hi @grammie2 . I hope you’re feeling better. I’ve started reading through older posts in the thread. I’m curious…. how did working from home go for you during this first round of chemo? I’m fully remote, and the company I grabbed up a job with on the tails of a layoff is so small that they don’t have disability benefits. (Oh boy am I ever kicking myself right now! 🙄) I figure chemo and surgery recovery as the big worries for me. I am a vacation time hoarder by nature, so the surgery time off should be okay. But that chemo time on top of it could add up fast!

  • grammie2
    grammie2 Member Posts: 102
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    @bailey.boo I am feeling better! Working was pretty good. I did chemo on Thursday and worked most of 8 hours on Friday and Monday. Worked Tuesday until time to go back to the cancer center for bloodwork and fluids. I found my concentration off on Friday and had to work really hard to focus. By Monday that was better. My boss is being very supportive and has given me the ability to work at home whenever needed and in the office when able. I have disability insurance, but he has encouraged me to play it out and see how much I can work. I was really moving slow in the mornings the first few days so it was nice to not have to dress to go into the office. And yes, all of the tests and appointments for me to even get to start chemo was a lot.

  • bailey.boo
    bailey.boo Member Posts: 131
    edited April 29
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    That’s great to hear, @grammie2 ❤️

    Having support at work is gold. And getting to work from home when you’re not feeling 100% is also gold. I traveled to my office every day when I was being treated for thyca but, as I was continuously told by all, medical staff and otherwise, “oh, you are so lucky! That’s the GOOD cancer! If you’re gonna get cancer, you want that one!” I’m suddenly understanding these statements; this breast cancer business will likely be a way different beast. Plus I’m older now— 50 and very-newly-post-menopausal. I’m still hoping and praying it didn’t sneak past my armpit! And hoping I can work through it. And, darn it, I still really want to start my masters program this fall! It’s a promise I made to myself long ago, and I finally made the commitment to do it and got accepted.

    I’m so glad you’re feeling okay, and thank you for sharing your info with me!

  • grammie2
    grammie2 Member Posts: 102
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    @bailey.boo don't you give up your dream of getting your masters!!! While beating this cancer may be a little tough, you can do this! And I was terrified that mine had spread past the first node found in ultrasound. The PET scan did show a second node most likely affected, but there was no abnormal uptake anywhere else, praise God! And the chest/breast MRI my surgeon ordered showed nothing else as well. And my breast mass was ugly and around 3cm. So keep faith that yours will be just fine! I know I'm only one treatment in, but I know I will get through it, even the hard days. We all just have to stay positive, and for me personally, keep strengthening my faith in God.

  • bailey.boo
    bailey.boo Member Posts: 131
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    My outcome of today’s first oncology visit: Stage IIB (that could potentially go higher). Grade 3, HER2+ was no surprise, but the amount of stressing how aggressive it was and how fast I need to move was. She said there’s no way I’ve had this for over maybe 8 months tops, or I’d be in the hospital by now, riddled with it.

    She said I need the works— chemo first, mastectomy with spacers (I’m doing bilateral), radiation, then targeted therapy. She said there is a 70% chance of success this first time around, by following this plan, as long as there’s been no spread.

    I’m meeting with my medical oncologist this Wednesday to discuss getting my port and starting chemo ASAP. The oncologist today recommends that I start treatment immediately and worry about getting a second opinion after. And, bless her, she gave me a choice of forgoing the MRI or taking Valium. I’ve never taken Valium but I’m mega-mega-claustrophobic. I’m making myself do the MRI next Monday. I will not think about it beforehand, and I will take the Valium.

    She also said there is no reason why I shouldn’t be able to work from home, that I probably wouldn’t take as much time off for the surgery as I am thinking I would, and that I should probably still plan to start college in the fall. But no jet ski during chemo, mastectomy recovery, or especially radiation! I knew that already, LOL! It would be my luck to catch a brain eating water amoeba with my resistance down.

    She also confirmed I can no longer take the only GERD med that works for me because synthetic hormones. I just refilled that sucker for 3 months too— $600 bucks. That went right in the garbage when I got home, along with my curcurmin and anything containing milk thistle.

    I hate that I have to do this. I hope to god it hasn’t spread— that is what terrifies me. And I want to get started, like yesterday, to stop this in its tracks.

  • grammie2
    grammie2 Member Posts: 102
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    @bailey.boo you've got a game plan now! Our diagnosis are the same. Stage IIb, grade 3 and Her2+. I feel like it took me forever to start chemo with all of the tests :( And I will warn you about GERD. I did get bad heartburn/reflux for about 5 days after treatment. I complained and she gave me an IV med and that helped alot. Our plan is similar, but my oncologist said I could opt for a lumpectomy as long as the chemo made the tumor disappear. I need to research lumpectomy vs mastectomy before time for my surgery. She will do either one that I prefer.

    Keep us posted on the MRI!! You've got this MRI thing!!!

  • snm
    snm Member Posts: 95
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    @bailey.boo sounds like you have a thoughtful care team! I relied a lot on guided imagery prior to BMX surgery to help with anxiety. Might even help with your claustrophobia? There are specific audio ones for days leading up to surgery. My workplace provided them for me but I'm sure you could search Google and find them.

  • djschmidt1
    djschmidt1 Member Posts: 46
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    @grammie2 @bailey.boo so we’re all three in the same type of boat just different places on the lake. I was also shocked at the rapid pace they started chemo once it was determined I needed to do that, I had my port installed on a Thursday and chemo the following Monday! I’m stage 2b 3cm but they are still saying lumpectomy but I’m have an mri Monday and surgery consult a week after. My oncologist has been doing this for 40 years and when I asked about mastectomy versus lumpectomy he has stated on more than one occasion that the outcomes for recurrent cancer are exactly the same. He feels mastectomy is drastic for what I’m dealing with. He has also talked about post op outcomes and further treatment for preventive measures. Honestly, I’m praying for a PCR here. He has stated that the her2 cancer reacts very well to chemo in more than 60%or cases when done pre surgery. By the way my surgeon told me of a study they’ve done at MD Anderson where 50 patients her2+ just did chemo and no surgery and none of those 50 had a recurrence…advances are being made here. I will keep you posted when I learn what my mri tells us in the coming weeks. MRI may 6, surgery consult may 13 surgery may 29 (I asked to push surgery for my daughters graduation on the 24).

  • bailey.boo
    bailey.boo Member Posts: 131
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    Oh, that’s wonderful to have options! And time to decide. My whole outer quadrant is affected, upper/lower/middle, and when she explained she could do a partial mastectomy, but… (and went into a huge and very logical explanation), I realized that was not a smart decision for my case. That’s OK. In for a penny, in for a pound. I went in thinking I would choose the fat reconstruction option over implants, because I abhor synthetic anything, but after she discussed that, too, I quickly flipped. I realized that implants are also for me. It’s not like being crunchy all these years since Thyca didn’t land me right here anyway! Lots of people love implants. I’m told the lady I bought this house from (omg, is it the house?!) got her reconstruction through the same plastic surgeon recommended to me. I’m so thankful that 1) reconstruction surgery is a given through insurance, and 2) reconstruction surgery has come so far.

    Thank you for the GERD warning! She did tell me they would give me something to help.

  • bailey.boo
    bailey.boo Member Posts: 131
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    Thank you @snm! That’s a great idea and now on my list! ❤️

  • bailey.boo
    bailey.boo Member Posts: 131
    edited April 30
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    I’m so sorry we’re all in the same boat, but I’m relieved to find support. And so early in, too. Virtual tribes for the win. Online forums were a lifesaver for me through deployments, step parenting, and thyca, and I’m happy to see they’re still around.

    I’m so glad to hear you may not need a mastectomy. 40 years in practice. 😯 He’s seen it all. You've found a master in the field. The yoda of breast oncologists!

    Thank you for sharing that study info. That gives hope, and I’ll take it.

    And good luck at your testing and appointments! I hope the graduation celebration is wonderful!

  • grammie2
    grammie2 Member Posts: 102
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    @djschmidt1 thanks for the info and I have used MDAnderson's site for info before and will check that out. Did you have a breast MRI prior to chemo? My surgeon requested one so she would have a comparison. Have you been able to tell your tumor shrank? After just one treatment, I'm too chicken to feel mine because I don't want to get discouraged LOL. And I forget, did you have nodes affected?

    @bailey.boo I admire you being able to discuss all those options with your surgeon. When I met with mine, we went over options and discussed a lot of things but agreed to meet after my 5th treatment to decide what to do. It was all so overwhelming in the beginning. And curious about your affected quadrant mention. Can you give more detail?

    I so appreciate these discussions ladies! You have no idea how much this helps!!! And I learn so much!

  • grammie2
    grammie2 Member Posts: 102
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    Deployments caught my attention. Both my sons and DIL are USAF. My grandbabies are in UT and it stinks being so far away from them.

  • djschmidt1
    djschmidt1 Member Posts: 46
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    Yes @grammie2 i had an mri after my needle biopsy then went back for an MRI assisted biopsy and also had to have a full CT prior to treatment starting. We do get poked and prodded…they have said no node involvement by we won’t really know until surgery.

    One thing I’ve learned is prepare for anything with this becasue it changes a lot.

  • bailey.boo
    bailey.boo Member Posts: 131
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    Sure! Evernote failed me or I’d be able to explain it better— it lost my whole recording mid-way and I haven’t been able to recover it. 

    Apparently, when the whole outer quadrant of your breast is involved, achieving clear margins with a partial mastectomy becomes challenging because the goal is to remove all cancerous tissue while preserving as much healthy tissue as possible.

    She said the complexity arises because ensuring clear margins in such cases as mine requires very careful navigation to avoid leaving any cancerous cells behind while sparing as much healthy tissue as possible to reduce the risk of cancer recurrence. And she said the functional/aesthetic results would also be subpar. 

    Also, in addition to the challenge of achieving clear margins, she said a partial mastectomy would require additional radiation therapy to ensure all cancer cells are eliminated. So this means more treatments and potential side effects. Plus, she said there’s always the possibility of needing further surgery if the margins aren’t clear initially, which then means yet another round of treatment and recovery process. 

  • bailey.boo
    bailey.boo Member Posts: 131
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    Aw! I have no grandbabies, but my oldest was Army. He ended up in Central FL. It gutted me to not see him often— he’s my leukemia survivor. When my husband was transferred to Central FL for his govt job, I was all for it. My husband has been all over the branches 😁 He's retired from it, but still involved with his day job.

  • aborayis
    aborayis Member Posts: 317
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    @bailey.boo Hi and welcome to this group! I’m sorry for what brings you here. You are doing such a wonderful job getting yourself prepared for your road ahead. Some things to look into that I would recommend for chemo is some kind of compression wear for hands and feet and cooling gloves and booties which seem to help many people prevent neuropathy that can be a side effect of the chemo. Also, cold capping of your head which can be helpful in minimizing hair loss. I used all of these with great results. I was able to work from home throughout everything. Yes, there were days when it was tough because I was so drained, buts it’s doable.

    @grammie2 Congrats on having one treatment done and dusted! I would call my side effects that I had mostly mild but they did get cumulatively worse after each treatment. Letting my MO know was very helpful- they had lots of tips and tricks that made things better. You got this!

  • grammie2
    grammie2 Member Posts: 102
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    @aborayis that seems to be the norm on the cumulative effect sadly. I was hoping for no worse than this one LOL. But I am a follower of Christ and that is where I'm placing my faith that things will continue mildly :) I'm doing the hands and feet icing, but didn't get the cold cap. I had read such mixed reviews I just decided not to try.