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ER-, PR-, Her2+ Roll call

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  • jonib
    jonib Member Posts: 94
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    Hi djschmidt - great that treatment is already working! Treatment is hard but if it is working, we can endure.

  • snm
    snm Member Posts: 93
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    Hello Djschmidt1, happy to hear that you feel that the lump has shrunk! Sorry to hear about the side effects. I wish you strength to pull through.

  • minustwo
    minustwo Member Posts: 13,128
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    djschmidt1 - good luck with your treatment. We truly are lucky that Her2+ has such good results now. I am 10 years out from a recurrence and 9 years out from my last Herceptin treatment. Now the radiologist recommended a breast ULS every two years and MRI only as needed. Hooray - breast ULS this year showed everything was clear!!!

  • moderators
    moderators Posts: 8,085
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    Great news, @djschmidt1, despite the tough week!

    @minustwo, congratulations on reaching a decade post-treatment, and on your clear ultrasound! We're super glad to hear that.

    Best wishes to you both!
    The Mods

  • djschmidt1
    djschmidt1 Member Posts: 43
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    Hi @jonib hope all is well with you. Thanks for the encouragement. I am feeling much better.

    @minustwo your outcome gives me such hope, thank you for sharing. Such wonderful news.

    @snm thank you!!!

  • mssoda101
    mssoda101 Member Posts: 26
    edited January 25
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    Hi Djschmidt1! Sorry you had to join us… but super glad to hear your lump is shrinking, I felt mine shrink as well and I had a complete response to chemo so at least we know the meds seem to work well for our kind, so I’m sending positive thoughts your way and wish you a complete response too! :)

    I’m curious, what was everyone’s Ki67??? Mine was 80-85%… I know that’s high and kind of a standard for this kind I think…?? Anyone else high like mine?? My Ki67 makes me nervous so I honestly just stopped looking it up.

  • minustwo
    minustwo Member Posts: 13,128
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    mssoda - sorry, they didn't test my Ki67 at that time so I have no idea.

  • snm
    snm Member Posts: 93
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    Oh minustwo! Your 10year mark warms my heart! Gives me hope! I'm only 1 year into all of this and I need to hear good vibes like yours. Thank you!!

  • snm
    snm Member Posts: 93
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    Mssoda, sorry I just looked for ki67 on my path report and it was not reported on and so I assume it was not tested.

  • mcbaker
    mcbaker Member Posts: 1,805
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    DJ, praying for you. We all have different stories. Mine could have been so much worse.

  • aborayis
    aborayis Member Posts: 285
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    Hi everyone, so glad to join up with you all. I wish I would have found this sooner! I was dxed in 7/2023 her2+, stage 2A, and with micromets to one lymph node. I had 6 cycles of TCHP and then in 12/23 a BMX with left axillary dissection (5 nodes removed) and tissue expanders —- with a PCR. Right now I’m having the expansions about every two weeks, and I’m on HP for 11 cycles. Because of brand new and apparently treatment protocol-changing research presented in 12/23, I was told no radiation by the RO and then went for a second opinion with another RO just to get up my confidence about that, and they were in agreement, as are the rest of my treatment team. I’m still in shock about this. Overall, at this point I’m finding myself going about life with a mighty mix of emotions - grateful, hopeful, “over it”, worried…

  • aborayis
    aborayis Member Posts: 285
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    @djschmidt1 just like you and @mssoda101, I felt my cancer shrink right away after the first treatment, and I too responded completely to the chemo (TCHP) - no cancer found on my mastectomy, lymph node removal pathology report after the chemo (a PCR). I hope that can add more hope for you.

  • moderators
    moderators Posts: 8,085
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    @aborayis, that's wonderful news! Thank you for sharing your positive experience. It's inspiring to hear stories of successful responses to treatment.

    The Mods

  • mcbaker
    mcbaker Member Posts: 1,805
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    I think that when the patient opts for mastectomy rather than lumpectomy, radiation is not necessary. This would be particularly so with post chemo remission. I am neither doctor no nurse.

  • minustwo
    minustwo Member Posts: 13,128
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    Chris - I believe you're right. I had a double mastectomy with clean margins & no further treatment. When I had a recurrence two years later, then it was stage 3 IDC & in the lymph nodes - so I had chemo & rads & herceptin for most of the year.

  • snm
    snm Member Posts: 93
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    Just curious if anyone here has thyroid disease in addition to breast cancer. I was diagnosed with hyperthyroidism (too much thyroid hormone) about a year before breast cancer. Was on antithyroid med for some time and now off. Just recently got my thyroid antibodies checked and they came back normal - woo hoo, along with my TSH.

  • djschmidt1
    djschmidt1 Member Posts: 43
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    Still here, prepping for treatment 2. Hair was falling so I had my head shaved yesterday, feels so much better to be honest. I hate to feel this dread for the second treatment, I wish it just got better and better, but I hear it is a “cumulative” effect so I am not stoked lol. Oh well, we do what we must.

  • minustwo
    minustwo Member Posts: 13,128
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    djschmidt - holding you in my thoughts. Or as we used to say in the "old" BC threads - "got you in my pocket".

  • mcbaker
    mcbaker Member Posts: 1,805
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    You are in my pocket, too.

    Yes, good to get your head shaved, and get rid of the dandruff. That was amazing for me. I don't think my hair fell out until about number three.

    Chemo starts out fairly easy, then gets worse, but by then you are getting used to it getting worse, so that makes it easier.

  • aborayis
    aborayis Member Posts: 285
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    My experience with chemo was pretty much just like it was for @mcbaker , where you get used to it getting worse each cycle and that gives you some ease. Another thing that can help you the further along the cycles you get is coming to understand how your body reacts to the chemo and to plan and act accordingly, like knowing when it affects you most and what the beginning of side effects feel like so you can take meds to control them better. For me, learning what I felt like before I really got nauseous helped me for the rest of the cycles after the first one, because I took the anti nausea medicine sooner. Because of that my nausea was never as bad as the first cycle. Sending love. You are in my thoughts!

  • djschmidt1
    djschmidt1 Member Posts: 43
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    Thank you ladies for your prayers and thoughts. Luckily, I only felt nauseous a few times after the first but I plan to take meds at the first whisper because i’m a wimp about nausea and vomiting. I am a side effects poster child. I had a rash from steroids, horrible diarrhea, painful urination, mouth pain, nose sores and weird pimples on my face toward the last few days. I can’t imagine what’s next lol. My oncologist warned me of more skin fun and extreme fatigue to come especially at #4. I’m at the why me stage of the program. :-/

  • aborayis
    aborayis Member Posts: 285
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    Chemo…the gift that keeps on giving. I’m sorry you’re having to endure extra suffering from the side effects. Here with you. At a point in the future I hope is not too far off, this will be behind you. Keeping you in my prayers.

  • mssoda101
    mssoda101 Member Posts: 26
    edited February 5
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    snm- no real thyroid issues here, I do have a nodule but thats all and it is very small and it was found on a random Dr visit… but glad yours is better, when they get whacky you’re too tired and a whole slew of symptoms! I’m glad so far mine is good too

    aborayis- nice to meet you and congrats on the PCR:) I’m so sorry we’re all here, but I was happy to find this thread… It’s nice to get reassurance from others and know we’re not alone :)

    A few days ago I woke up with a swollen breast… 8 weeks post op… also it’s very sore in one spot.. this is on my left side (the no cancer side) so I’m all worried thinking something sinister of course. They ultrasounded it and said it’s a skin infection but I had no idea I could have one 8 weeks out and I’m really hoping that’s all it is! It’s warmer, swollen, and today had a red area that is like oddly itchy. So needless to say I’m freaking out slightly. I go back to my surgeons office tomorrow (they gave me antibiotics) started them Friday (only been 2 days) and I think some of the swelling has come down… but that’s it… soooo yeah. I’m so done worrying so much. I guess I just need to wait a few days and hope it gets better!! I’ll let you guys now what they say and I’m going to touch base with my Onc tomorrow, but I do have an infusion on the 15th anyways…

  • aborayis
    aborayis Member Posts: 285
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    @mssoda101 any better today? The whole worrying thing is so hard. I’m over it, too, and yet… it gets the better of me sometimes, worrying about what else, what next, what is that? I think after being diagnosed, it will probably always be with me. All we can do is try to turn our minds intentionally as best we can to the positives.

  • izzyc123
    izzyc123 Member Posts: 27
    edited February 6
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    I'm just finding this thread. I'm also ER/PR negative and HER2 Positive. I've just finished 6 rounds of Taxol/Carbo/Herceptin/Perjeta. BMX with expander placement is scheduled for 2/21/24, the day before my 50th birthday! Pray for the best gift ever in a PCR! I'll take any BMX advice you have!

    My advise for those of you starting chemo came from my nurse navigator: get a journal or planner and write down how you feel each day. That way, you have something look back on to see how round 1 was, etc. It helped me, too, to show my doc what my brain didn't necessarily remember at the time (You've heard of white coat syndrome: when anxiety goes up in an MD's office. Many also suffer from white coat brain where everything we wanted to ask goes out the window until we are in the car on the way home! Writing everything in a journal or planner help to mitigate this!

  • minustwo
    minustwo Member Posts: 13,128
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    Izzy - you had the exact chemo I did. After surgery with a PCR, my onco still wanted me to do radiation. And I continued Herceptin every 3 weeks for a number of months. Ten years now and everything is fine.

  • mssoda101
    mssoda101 Member Posts: 26
    edited February 6
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    @aborayis Awww thanks for checking in… I think so… seems a little less swollen and doesn’t hurt as bad. I kinda got all scared and the possibility of IBC was getting my attention but I’m trying to focus on what it most likely is! I am just sticking to the antibiotics and hoping it’s even better tomorrow because that’s all I can do… focus on the current day and then try to move forward instead of trying to predict the future, only deal with what I know today! Hahaha… this stuff is so fun! lol… NOT! I have no idea how I’m going to handle not being on meds after July…. That will be interesting.

    @izzyc123 - I’m praying you’ll have a PCR, it seems most of us do with our subtype :) Let us know how it goes! And happy early birthday!🥳

  • aborayis
    aborayis Member Posts: 285
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    @izzyc123 I’m just a few months ahead of you with a very similar story. I had my surgery 12/21/23. I have my third expansion appointment on Friday. I had my 2nd of eleven post-BMX HP infusion appointment last week. Here’s a tip for the surgery. They put you in a post-surgery bra that you wear continuously while you are healing. Ask them at the hospital for a second one so you can switch them out and put them in the wash.

    @mssoda101 That sounds like good news! I hope you continue to feel better. Keep us posted on how you’re doing.

    I’ve been having a sore scalp as my hair is coming back in where in thinned out (I did cold capping and kept about half of my hair). Also I’m still so tired. Not poisoned-tired like when I was on the TCHP but still significantly fatigued all the time. Anybody else have/had this on just HP?

  • mssoda101
    mssoda101 Member Posts: 26
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    @aborayis I’m always tired!! Haha plus I have a toddler which increases the tiredness!! I keep having the bloody nose though… lost 95% of my hair and all of my lashes and eyebrows but those two are back… hair is like an inch long lol….

  • izzyc123
    izzyc123 Member Posts: 27
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    @aborayis How did you feel after the mastectomy? I've been told it will be an overnight stay and that I'll come home the next day. Just trying to anticipate the "aftermath": how did you feel the next day/days, etc. I've heard to use either a lot of pillows or to sleep in a recliner. Any other advice? I saw your advice about the surgical bra. Thank you!