ER-, PR-, Her2+ Roll call

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Comments

  • snm
    snm Posts: 170

    @beekaycro24 thinking of you chica! Sending you lots of positive vibes! From my reading, the treatments for her2+ are very, very, very effective. Agree with @catarina_fm

  • djschmidt1
    djschmidt1 Posts: 95
    edited January 7

    Exactly what catarina said! Dont lose hope, you are on the right path!! Sending big love. God is with you. @beekaycro24

  • aborayis
    aborayis Posts: 492

    @beekaycro24 One more echo of what @catarina_fm told you. You may still be looking at a PCR situation. And the news about your lymph nodes from the imaging is really great, too. Sending a giant hug and love to you!

  • aborayis
    aborayis Posts: 492

    Hi beautiful friends! I met with my PS yesterday and we’ve scheduled a revision surgery for my right breast for 3/18. He’s going to replace my implant and place a mesh sling underneath for support and boost to address the strange shape that I’ve got going on on that side… looks like the bottom three quarters of it has slipped down. It means opening up the original surgery site at the scar, going under full anesthesia, a recovery again etc., so my mom is coming to be with me for the day and recovery over the few days after. My nipple tattoos will be done after that’s healed. I feel like my sense of perspective is OK. While I wish I didn’t have to have this going on, I know it happens sometimes and compared to other things I’ve already faced or could be facing, it’s no biggie.

  • catarina_fm
    catarina_fm Posts: 111

    @aborayis I understand you; it’s frustrating to go through another surgery, but I believe the recovery will be easier and quicker, and it’s going to look great! I’m sure this time it’ll be done right 😊 By April, you’ll be pain-free and doing well.
    Stay strong, I’m rooting for you!

  • mcbaker
    mcbaker Posts: 1,889

    aborayis, I have an appoint with my PS's NP this month to discuss revision. I lost 30 pounds since BC, and maintained the same weight for several years. Implant has shifted (inch separation between tat and "nipple" on the implant). Tired of carrying this big water balloon on my chest. I hope we both get satisfaction. Would rather go flat on the right side than have it like it is.

  • @aborayis sending you good wishes and prayers for an easy go of the revision tou have to have done. Im sure you will feel way better afterwards.

  • Anyone have experience with chemo curls amd know how long they last? I love having hair again but have no idea what I am doing with these short wavy, wiry hairs I have on my head. My hair was pencil straight before chemo took it.

  • mcbaker
    mcbaker Posts: 1,889

    The curls don't last so long. Mine grew out about five inches before it went straighter than it had ever been. I didn't try to do anything to it. I enjoyed a trouble-free 'fro.

  • snm
    snm Posts: 170

    @aborayis wishing you good luck my friend! You will pull through and have new improved symmetric boobies, which will be eagerly waiting to be tattooed! Surgery sucks but we got to do what we got to do. I have implants and am already not looking forward to having to replace them in 10 years.. wondering what I can do to push that off! Going flat @mcbaker is definitely tempting. I am 47 now ..who knows how long I'll put up with having to replace them, every 10 years..ugh. I'm already tired of coloring the grays out of my hair!!!

  • mcbaker
    mcbaker Posts: 1,889

    I am several weeks short of 75.

  • snm
    snm Posts: 170

    @mcbaker good luck with your procedure too! You give me hope that I may age in stride like you!

  • aborayis
    aborayis Posts: 492

    @mcbaker let us know how your consult for revision this month goes. We’ll be the revision twins.

    Thanks for all the encouragement and perspectives everybody. I will be OK and get past the annoyance. C’est la vie!

  • grammie2
    grammie2 Posts: 275

    Hey ladies!! I'm back from UT and already miss those grandbabies!! We had so much fun!!!!

    So much going on with a lot of you! Surgeries, waiting on pathology results, still navigating chemo, radiation! Praying for all of you!! Saw comments on hair growth and that is my current struggle. It is going sooooo slow!! In reading about Phesgo, seems it can slow the process some. Eyebrows and eyelashes are meh. Hair on legs needs a weed eater LOL. Pooh!

    Finished lymphedema PT and am on my on with some massaging. Seroma still there. Radiation SE's are diminishing. I swear I still have chemo brain though. I just don't believe my mind reacts the way it did prior.

    I've been seeing some links between antidepressants and breast cancer. Back in 2006 after my mom passed away, I went into a really big depression. I took Risperadal and Zoloft for a couple of years. Praise God I improved and was able to successfully stop! Anyone else know anything about this? I'm the first person in my immediate family with cancer of any kind.

    Excited to get back to a routine again after vacation! Hoping to keep more up to speed on what's going on with all my warriors!! Hugs and love!

  • snm
    snm Posts: 170

    @grainne welcome back! I know a bit about brain fog and hair loss but not from chemo..my graves thyroid disease flared up today despite 1 year remission. 😩 I'm back on methimazole. Was hoping to a better start to the new year..oh well at least we caught it.

  • snm
    snm Posts: 170

    Oops I meant to tag @grammie2 ! Brain fog- see!

  • aborayis
    aborayis Posts: 492

    @snm Argh! Sorry to hear you’ve got a Graves flare up. Thyroids are so finicky. How did you catch it? My Graves is still a work in progress 8 months into treatment. My levels are normal for the first time except for the antibodies which are better but still there. How much methimazole are you on? I’m down to 5 mg from 40 mg daily. Here’s hoping you’ll be back in remission soon!

  • snm
    snm Posts: 170

    @aborayis I was noticing fatigue, weight loss and fast heart beat especially at night and occasional fine tremor in hands. I was feeling hot at night but thought that was perimenopause - guess not! My TSH was undetectable yesterday w T4 n T3 through the roof. I had been off of thyroid med for over a year with normal TSH. ..ugh! Well now I'm back on methimazole 30mg daily w propranolol. I was sick with flu bug over the holidays and I wonder if that tipped me over the edge. I haven't seen my endocrinologist yet but I now she likely propose RAI (radioactive iodine). I think I would prefer to be on lifelong methimazole rather than the alternative. Will see what she says. Hope you have a better outcome!

  • aborayis
    aborayis Posts: 492

    @snm Ugh! I remember those symptoms and how they make you feel. Keep us posted. I hope the methimazole does the trick!

  • catarina_fm
    catarina_fm Posts: 111

    Hi girls! How's everyone doing?
    I wanted to share some great news with you—I got the results from my surgery, and I had a pCR!! Yay! 😁🎉🎉🎉

    The doctor was very happy, and so was I. They removed 5 lymph nodes, 2 of which had previously contained cancer cells, but everything was dead, and the rest of the. were healthy. I'll be starting radiotherapy at the end of the month.

    I already had the CT scan for mapping and got the tattoos. It was a bit uncomfortable staying in the same position for so long (it was only 15 minutes, but it felt like forever) with my arms raised, chin locked, and having to control my breathing. The doctor told me I have a 4% risk of developing cancer in the irradiated area later and a 5% risk of developing leukemia due to the AC chemo. I really hope none of that happens—I've had enough bad luck as it is.

    @grammie2 I think there's no point in searching for causes. I have no family history of cancer, I’m young, slim, don’t smoke or drink, exercised a lot, ate healthy... and it still happened. The doctor said it was just bad luck.

    @djschmidt1 oh, and I don’t know how to take care of straight hair! I’ve always had curls, but the hair that’s growing back now looks straight. I’m hoping it will eventually return to what it used to be.

    Wishing you all lots of health, including those dealing with thyroid problems. Sending a big hug! ♥️

  • aborayis
    aborayis Posts: 492

    @catarina_fm Wahooo! Congratulations on your wonderful news my dear!!

  • grammie2
    grammie2 Posts: 275

    @catarina_fm oh gosh how awesome!!! I am so happy for you!! I totally understand the uncomfortable position and breath holding. But if you made it through the mapping, the actual radiation zap is rather quick. I think 5 minutes was the max I was receiving treatment. I never got super comfortable about holding my breath though. Was always anxious. Even when they told me the machine would stop if it detected breathing. How many treatments will you receive?

    Hope everyone is doing well and having a good week! Tomorrow is Friday and I have a 3 day weekend!! Plan to rest and relax a bit. Spent yesterday evening/night with my dad in the ER. He is in assisted living and they called to say they were sending him because he wasn't doing well. Pneumonia and UTI (which is chronic for him). He is 88 and every time he goes through one of these illnesses, it just seems to make him weaker even when he is past the illness. Poor guy, he has been through a lot in his long life. Love him to pieces.

    Hugs!!!!

  • grammie2
    grammie2 Posts: 275

    Question please. What is everyone who has a port planning to do about leaving/removing? My plan so far is to leave it until I'm done with Phesgo. Dread having another surgery though.

  • beekaycro24
    beekaycro24 Posts: 115

    I'm SO happy for you! I think hearing "PCR" is akin to hearing "You've won the lottery!" I am so excited at everyone's journeys. Grammie2 - Utah is one of my favorite states! It is absolutely gorgeous. I'm so glad you got some family love time. I think I've experienced all of my side effects after #6…lol. From thrush, to mucositis (!), to taste buds out of whack, to hand/foot syndrome, to watery eyes/drippy nose, and neuropathy in my hands, feet, and legs. My legs are like jello. I went grocery shopping yesterday and was exhausted by the time I got home. I will be so glad to have my stamina back. It's been so cold here that I haven't felt like going outside to walk and it is so boring walking in the house. I was really hoping to have my energy levels back to normal before surgery, but I seriously doubt a lot will change in a week. I go tomorrow for my follow-up echo-cardiogram and pre-op appointments. Surgery is still on for the 27th. I've decided not to worry about the ultrasound tumor measurements. Mostly because when I do a self breast exam, if I didn't know I had a tumor I wouldn't feel a tumor….it's just all flat and squishy. The only time I feel anything is if I grab my entire boob and really squeeze from the sides, then I feel a grape-sized something. Of course, none of this matters anyway until the pathology report after surgery. Thank you all for your encouragement and support and especially the advice! You don't know how much that means to me.

  • beekaycro24
    beekaycro24 Posts: 115

    I'm keeping mine in as long as I can. My onc told me I can get my Herceptin/Perjeta fusions through my port instead of the Phesgo shot, so that's what I plan to do. They said it would be a 30-minute infusion. I think it's a waste to have the port removed too soon. I think it's almost jinxing it to remove it right away, but I've seen in Facebook groups where people removed theirs right after chemo stopped…one person even turned hers into a Christmas ornament! I'm NOT going to do that.

  • grammie2
    grammie2 Posts: 275

    @beekaycro24 hang in there!! You might be really surprised what another week will do for your energy! And smart not to worry about the ultrasound. Someone said this earlier, but it is so true that this chemo/targeted drugs are very effective in wiping out the HER2. My surgeon and MO both could feel "something" before my surgery but said it was most likely just scar tissue in the tumor bed. Squishy was the exact word they used.

    Cold here too in good ole' VA!!!! Worse next week they are saying!

  • catarina_fm
    catarina_fm Posts: 111

    Thank you so much, ladies, you’re all so sweet!

    @jessybessy how are you feeling after the last treatment? I hope you're doing as well as possible. From now on, it's all about recovery 😉 A big hug to you!

    @grammie2 It's good that the treatment itself takes less time. I still don’t know how many sessions I’ll need because the doctor said she’ll decide based on my CT scan mapping. She’s going to study my case to choose the best irradiation technique and equipment for me. She mentioned trying to limit it to just 15 sessions, but it could go up to 25. I didn’t like the part about filling my chest with air and holding my breath either! They kept saying not to fill it to full capacity, but I can never tell if I’m taking in the same amount of air each time. They also explained that the machines only deliver radiation if everything is perfectly aligned. I’m going to try not to get too anxious. I hope your dad holds up—I’m wishing him a speedy recovery! Sending you a hug, and try to make the most of your weekend.

    As for the catheter, my doctor said that if everything went well with the surgery, she’d let me remove it. It bothers me, and I won’t use it for very long since I’ll only be taking Phesgo in my leg for 1 year. That means I’d have to keep getting poked every month to flush a catheter that’s not being used. Plus, since I’m slim, the catheter is really noticeable. Last summer, I couldn’t wear many of my t-shirts and tops because it’s so visible—it sticks out a lot and makes me uncomfortable. They placed it way too close to my neck! So yes, I plan to have it removed soon and never want to see it again. Talk to your doctors and ask if it’s worth keeping or not. For those who prefer receiving antibodies through the catheter, of course, you should keep it. And if you feel more comfortable keeping it, I think you should do what feels best for you.

    @beekaycro24 I thought of you during my appointment today. A girl who had surgery on the same day as me hadn’t had a complete tumor response according to the MRI, but she actually also had a pCR because everything in her breast was dead. I’m feeling very positive about you too and rooting for you! Please let us know how your surgery went as soon as you can! Good luck! I hope it goes as well as mine did. The recovery was wonderful. The breast operated on is a little smaller than the other, but with the bra, you can’t notice it at all. The doctor said that they’ll be even more similar once the stiffness goes away. As for getting your energy back, it will come back slowly, you’ll see. Even now, my leg muscles still hurt and I have some side effects, but I notice that I’m recovering a little more every day. I already have some little hairs on my eyebrows and head. It’s nice to see the body starting to recover 🤩

    A hug to all of you! Hope everything is going well 🌸

  • mcbaker
    mcbaker Posts: 1,889

    Grammie, I kept the port through the year of Herceptin, then had it removed a month or so after. If you keep it unused, you will need to have it regularly flushed to keep it operational. The procedure for port removal is fully conscious, with just a little bit of local. Not a real surgery at all.

  • I'm OK sweetie, had my completion MRI today and am really exhausted from that. Get results next week, plus I book surgery, etc.

    Just SO happy you got your PCR x