ER-, PR-, Her2+ Roll call

18485878990100

Comments

  • grammie2
    grammie2 Member Posts: 221

    Hey all! How's everyone doing? My butt is dragging. I can def. tell I am more tired on the 3rd one. But happy to report my platelets were up to 223 on treatment day. They started me on oral mag so hoping it doesn't mess with the tummy too much.

    Would love to hear how everyone is doing!

  • djschmidt1
    djschmidt1 Member Posts: 76

    hi @grammie2 ! I was going to post today. I had lumpectomy Wednesday and have no lymph node involvement. Today I also learned I have had a complete response to chemo. Whew. Im still working on side effects 5 weeks out from chemo but happy to say it did exactly what it was supposed to do. Keep the faith! I’m sorry you're dragging. ❤️

  • grammie2
    grammie2 Member Posts: 221

    @djschmidt1 that is awesome news on the lymph node and the complete response!!!! I hope recovery is quick for you!! I'm trying to keep the faith for sure, but today has been a somber day for some reason.

  • djschmidt1
    djschmidt1 Member Posts: 76

    @grammie2 I totally get it, it seems that might be part of the process, i got down on things at the third dose and kinda stayed there for a bit (got down after the last one too). I hate that for you as this is tough stuff. You are climbing a mountain for sure. Sending love. 💕 and hugs

  • grammie2
    grammie2 Member Posts: 221

    Thanks @djschmidt1

  • bailey.boo
    bailey.boo Member Posts: 230

    That’s wonderful news!! ❤️ I hope all chemo side effects go away now that it’s done the job so well!
    I go in for round 2 on Thursday. It’s my first round since learning I’m actually stage 3, and your post is a great reminder that side effects just mean it’s working, and all the better if a little TOO well 😊

  • bailey.boo
    bailey.boo Member Posts: 230

    I’m glad those platelets are on the up for you! But I’m sorry you’re so tired and just feeling yuckier in general. I hope you feel better soon!

    I have a magnesium drink mix I’ve been using at night called “Mela Out.” It’s a little chalky, but it’s natural-ish and also helps you sleep. I bet there’s a lot of brands and versions out there.

  • grammie2
    grammie2 Member Posts: 221

    Thanks @bailey.boo ! I'm wondering if the oral mag they started me on is not the culprit for the yucky tummy. I've always eaten before I took them, but who knows. I still had to have the 2 hour mag drip today so if I still have to do that to keep them up, I'm not gonna take the oral ones and see. Hubby found a powder called Prime (Body Armour maybe) that has mag and is low sodium. I've had some ankle swelling from the steroids. I don't know what my labs were today, but it should be on the site tomorrow. Curious to see. I hadn't had to take Zophran before but I've taken it a couple of times now. Ugh!

    Did you finally get your D under control? I sure hope so.

    Hugs to everyone!!❤️

  • moderators
    moderators Posts: 8,586

    @grammie2, some of the women in the Zoom meet-up groups have also mentioned this CALM magnesium supplement you can drink: https://www.costco.com/natural-vitality-calm-magnesium-citrate-powder%2C-20-ounces.product.100485804.html

  • bailey.boo
    bailey.boo Member Posts: 230

    I still am still not normal in the GI department, but I’m WORLDS better and no longer relying on medications. And just in time. We will see what round 2 on Thursday brings.
    At least I know now what to expect! I’m going to approach things differently and stick to a mostly liquid and BRAT type diet for the duration, this time, and I have things like banatrol here now to help. No forcing myself to eat solid food or things that rip me up this time. I’m super stocked on Imodium, jello, and better than bouillon! And they said they’ll give me atropine on the day of chemo.

  • tempusername1
    tempusername1 Member Posts: 1

    thought I would leave a note to support and encourage those going through treatment now. In January 2020 I was diagnosed with HER2 positive hormone negative stage 2B 1 positive lymph node and 4.4 cm tumor. Neoadjuvsnt chemo TCHP and was PCR after lumpectomy pathology. Successfully cold capped. Went through radiation post surgery. I am doing well today. I encourage all going through this to keep up hope. It is not easy! Also please be your own advocate! Insist on physical therapy. Do your exercises. My shoulder was very tight and painful from the treatment. Not sure which one but physical therapy helped immensely. Side effects did eventually go away. Not overnight but today I can say I feel great and am physically active. ❤️🎀

  • aborayis
    aborayis Member Posts: 466

    @tempusername1 You are wonderful for dropping in on us with your positivity and good news. I’m so glad you’re doing well. Thanks for bringing hope!

    @Baileyboo I had to give up my whole food plant based diet because my chemo belly couldn’t handle the fiber. Once I found what I could tolerate, my gastro issues went away. I hope that’s what happens for you, too. Meanwhile, I’m glad things are at least a bit better than before. Good luck with round two!

    @grammie2 i totally know what you’re talking about. The dragging sense is real. Make sure to give in some and be kind to and listen to your body. It will get better (and that’s from someone who worried many times it wouldn’t). Great news that your platelets are up! Hopefully that will help with how you’ve been feeling.

    @djschmidt1 Woohoo times a million! Your wonderful news made my day!! I hope the side effects dissipate for you soon so that they’ll be behind you, too.

    As for me, I’m having the time of my life helping to take care of my new baby grandson and so very thankful to have most of the treatment behind me and my new diagnosis of Graves’ disease well under control. I finally have my energy back, just in time for midnight feeds and lots of baby rocking. It’s the best. I read that back before there was herceptin, our diagnosis had a prognosis of just a year or two. I am so grateful to be alive and able to be around for my family!

  • djschmidt1
    djschmidt1 Member Posts: 76

    @tempusername1 thank you for sharing your experience, its always comforting to read about good news. ❤️ I’m going to ask for physical therapy.

    @aborayis thank you so much! Im feeling better all the time. Headed to radiation and immunotherapy next.

  • grammie2
    grammie2 Member Posts: 221

    @aborayis oh gosh!! Congrats on the new grandbaby!!!! Enjoy every minute!!!

  • snm
    snm Member Posts: 118

    @tempusername1 so happy to hear your good news! Thank you thank you for coming back and giving us an update with hope!

    @aborayis congratulations on grandbaby! Life is beautiful!

  • moderators
    moderators Posts: 8,586

    @tempusername1 - Welcome, and thank you for sharing your encouraging story here with all of us! We're super glad to hear that you're doing well today and feeling great.

    Again, welcome to our community, and looking forward to hearing more from you. 💖

    The Mods

  • lkc
    lkc Member Posts: 182

    Hi All,

    Not been on these boards lately, However it was my life line when I was diagnosed and going through treatment.

    I am 19 years out from a stage IIIC BC wtih pretty nasty poor prognosticators,

    I am well living life large and in profound gratitude.

    I wish you all a gentle ride down this BC road that nobody wants to go down.

  • grammie2
    grammie2 Member Posts: 221

    @lkc that is awesome!!! Thanks for stopping by and giving us some much needed encouragement!!

  • grammie2
    grammie2 Member Posts: 221

    Hey everyone! Hope everyone is doing well! I am so excited to read the past couple of posts from folks stopping by and letting us know they are doing well after BC!!!! I really needed to read that today.

    I had to call my cancer center, pretty sure I saw a small amount blood in my stool. The nurse talked with my oncologist and no one seems too concerned at this point. No pain so that was good. I'm scheduled for #4 of 6 tomorrow and unless platelets are super low, still good to go. They mentioned the culprit is most likely Perjeta. Going to ask again tomorrow. Anyone else have this issue? My nose, especially one side will have blood and that happened early on and the later than it has after treatment. Not pouring, just wet inside. They will send me home with the stool card and will monitor it. I couldn't remember eating anything red or purple the couple of days before, but my body seems to not be digesting food as normal. I've eaten a ton of watermelon but doubt that would do it. Super watery eyes have lasted for over a week. Wake up with crusties in my lashes. Ugh!! Ready to get these last 3 over and done!!! Sorry for all the whining again LOL.

  • minustwo
    minustwo Member Posts: 13,324

    This used to be my lifeline too. I'm 10 years out from my last Herceptin treatments in 2014 after a recurrence from DCIS to ILC , TCHP, surgery, radiation and more Herceptin. So far since I've had a bilateral mastectomy, I don't have mammograms anymore. At this point, I'm down to only breast ULS every other year. The scans in 2023 were good, so….. That certainly doesn't keep us from being anxious each & every time.

  • aborayis
    aborayis Member Posts: 466

    @lkc and @minustwo Please know how grateful I am to hear your stories. I literally gasp and then have a long, restorative exhale. You are both so kind, and I’m inspired to hopefully be fortunate to someday pay it forward. Thanks also for the realistic perspective. The worry about the future and scan results is going to be a fact of life for all of us.

    @grammie2 Me: Eye crusties… check. Extra sensitive and easily bleeding nasal passages… check, check. One for each nostril. Didn’t have to deal with the possible blood in stool. I hope that turns out ok. And whine on, sister. Who else better than us to bear witness? We all get it. As of tomorrow, you’ll be more than halfway through your 6 rounds, and you will start to feel a whole lot better. Big hug from me.

  • grammie2
    grammie2 Member Posts: 221

    Hey everyone! I have #4 done, now just have to survive the next few days LOL. My platelets were up to 190, but RBC is still slowly going down. This only adds to the fatigue. Still think that low platelets over a few days may be the blood in stool culprit. They sent me home with specimen cards so they are going to monitor this. Praying it's nothing serious. They don't seem super concerned.

    They did give me a mild sleeping med and an inhaler. She heard some wheezing (most likely my allergies) but wants to ward off any worse issues.

    How's everyone else doing?

  • djschmidt1
    djschmidt1 Member Posts: 76

    Hello all! I’ve enjoyed a few weeks with no procedures or treatments as I heal from surgery. My surgery (lumpectomy) experience was a breeze but the lymph node location is the most uncomfortable. I start radiation soon and they reduced from 6 weeks to 4(yay). I start immunotherapy Monday with Perjeta and Herceptin. While my Onc says its nothing like chemo I still dread side effects as I had them all with chemotherapy. I still have considerable muscle pain, edema and neuropathy from chemo and start physical therapy in July for those.

    I can say I do feel almost “normal” other than these lingering symptoms.

  • aborayis
    aborayis Member Posts: 466

    @tempusername1 I want to thank you too! Your story is inspiring to me and fills me with hope. I’m so grateful to you for coming by here to give us strength. It really means so much.

  • aborayis
    aborayis Member Posts: 466

    Hi, everybody. I just had another round of HP infusions. Three more to go. My energy is finally back and I’ve stopped feeling all shaky and buzzy from the Graves Disease. And I had a wonderful realization the other day that my new boobs don’t feel like foreign objects sitting in my body. Yeah, they are mostly numb, but just like the rest of the parts of my body, I don’t constantly notice they’re there. Yay!

  • moderators
    moderators Posts: 8,586

    That's wonderful news, @aborayis! Any plans to go out now that it's summer since you're having more energy lately?

  • grammie2
    grammie2 Member Posts: 221

    @djschmidt1 so glad you are feeling good and that surgery went well!! Our path is so similar so I hope you don't mind my questions. When first diagnosed, I understood that I would be on Herceptin for several months after surgery/radiation. I too am doing TCHP right now. I'm curious if they will add Perjeta for my plan as well. I'm starting to have below the knee swelling and it's lasting longer with each treatment. And I think Perjeta is the culprit. Thanks for sharing your journey!! It's so helpful!

  • djschmidt1
    djschmidt1 Member Posts: 76

    Hi @grammie2 !

    I will certainly post here what I notice after treatment, I've read some diarrhea may pop up. (Yay). My edema worsened after my last chemo so I am interested to see if either of these two were the culprit. I will definitely keep you posted.