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ER-, PR-, Her2+ Roll call

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  • snm
    snm Member Posts: 76
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    @izzyc123 - not sure if this would be helpful to you but I posted my journey re BMX and Tissue expander/implant exchange: "Tips for Bilateral Mastectomy and immediate tissue expander with Implant Exchange". Please keep in mind everyone is different. I've read some stories where folks had very minimal discomfort; unfortunately not the case for me. On 2-8 it will have been 1 year since becoming cancer free with BMX! So far so good!

    I wish you and everyone going through treatment good vibes.

  • aborayis
    aborayis Member Posts: 261
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    @izzyc123 I went home the same day, and I hope that this gives you a sense that the surgery experience is less intense than you might think. That being said, you’ll feel very sore and only be able to move your arms like a T-Rex for the first few days. The third and fourth days were the hardest for me, I think because my body was compensating and protecting my chest so I felt sore in my neck and back too in addition to the surgery site. After that each day felt a little better. I was most comfy sleeping with pillows on my couch for the first few weeks. Some clothing purchases that were helpful were oversized button down flannel shirts and loose leggings or sweats and button down notched collar PJs (I just ordered what I didn’t already have from Amazon). I lived in these. I also loved using Scrubbz Rinse free bath sponges (also on Amazon). They made me feel freshened up during the period where you can’t shower. The lavender scent was very soothing, too.

  • snm
    snm Member Posts: 76
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    @izzyc123 in case this might be helpful: I posted "Tips for Bilateral Mastectomy with Immediate Tissue Expander AND Implant Exchange". I basically talked about my journey. But please keep in mind everyone is different.

  • izzyc123
    izzyc123 Member Posts: 27
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    @aborayis and @snm: Thank you! It's just that fear of the unknown. The more I learn, the calmer I'll be.

  • kimm992
    kimm992 Member Posts: 28
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    Just came back to chime in that I was diagnosed over 8 years ago (at 35) and am happy and healthy with no recurrence. There is SO much reason to hope…

  • aborayis
    aborayis Member Posts: 261
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    Thank you for sharing your positive news! It’s scary from my current vantage point. Your post gives me hope.

  • aborayis
    aborayis Member Posts: 261
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    @snm I just checked out your Tips post! Wow - what an incredible resource you created. Wonderfully comprehensive.

  • mssoda101
    mssoda101 Member Posts: 26
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    @kimm992 thank you! Nice to see some long term folks here for us newbies!! Brings us happiness and hope! ❤️ glad you’re doing so well!

  • aborayis
    aborayis Member Posts: 261
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    Hi all,

    Just checking in…

    @mssoda101 How are you doing?

    @djschmidt1 You’ve been in my thoughts, too. How are you?

    @izzyc123 How about you? How are you these past few days?

  • mssoda101
    mssoda101 Member Posts: 26
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    @aborayis hey there! doing well… I switched antibiotics but I’m on day 5 and I don’t feel like it’s better yet, still warm and swollen (not huge, it’s not super easy to tell) red spot still there… I went to the Dr this morning and she thinks it’s improving so I stay on the antibiotics till the rest of the 5 days are up so it’s a waiting game… I have my infusion on Thursday so my oncologist will look at it then too, but hopefully it’ll be better and they don’t have to take it out and “wash” it. So these antibiotics better kick in!! I think most of this is the mental hurdle lol. Seriously the HARDEST part when your mind messes with you!

    How are you doing?? :)

  • izzyc123
    izzyc123 Member Posts: 27
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    @aborayis Hi! I'm doing well. This is my last week at work before my BMX, so that's hitting a little hard. I'm not anxious about the surgery yet, just everything I need to get done at work. But, that's ok. That's just me being my OCD self. If it doesn't get done, it isn't the end of the world. It will be there when I get back. Had my first infusion of Herceptin/Perjeta without Taxotere and Carboplatin on Thursday. Had to go back Friday to get Mag and Potassium topped off. That's been a ongoing struggle, just like the swelling. I'm still optimistic that my body will get itself sorted back out soon!

  • aborayis
    aborayis Member Posts: 261
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    The mental and emotional challenges of this whole breast cancer journey to me are almost always more of a struggle than the physical ones. @mssoda101 Here’s hoping the new antibiotics kick in for you and soon. @izzyc123 I can relate to wanting to keep normal life as under control as possible. I know you’re right, it will be waiting and can be waiting for you when you’re done recovering. Someone gave me good advice for when you are on the operating table before they put you under. Another cancer survivor. She said it’s important to be as calm as possible going under because if you’re anxious you’ll wake up that way. She told me to breathe, meditate, use guided imagery to stay calm. I imagined myself in a pool lying on a float floating away. It really helped. As for me, I had a 90 cc expander fill on Friday and it’s been a big owie! Alternating Tylenol and Advil helps. I just have to stay on top of it.

  • djschmidt1
    djschmidt1 Member Posts: 24
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    I’m ok but dealing with gastric issues. I have this somewhat constant low level nausea and of course, diarrhea. I may try an otc as it’s not to the level of taking meds constantly. Anyone have any suggestions?

    At my onc appt yesterday he thought it was anxiety but I just don’t. The good news is my cancer is reacting really well to the chemo and the dr said that’s a very good sign for me related to outcome. Very encouraging.

  • aborayis
    aborayis Member Posts: 261
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    @djschmidt1 Queasy Drops hard candies were very helpful for me. I ordered them on Amazon. Fabulous news that the cancer is responding to the treatment already! Woohoo!

  • izzyc123
    izzyc123 Member Posts: 27
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    @aborayis I usually do well with surgeries. I didn't freak out about my L4/5 fusion. I know this is a little different, but I'm actually relieved that it's almost here. Give me all the info on the expanders! Hoping the ouch has settled for you!

  • snm
    snm Member Posts: 76
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    Totally agree with @aborayis about the guided imagery- I listened to some audio a few days before my surgery and imagined that I was in the mountains.

    @izzyc123 you are right- trust your body to bounce back. It is typically more resilient than we think!

    @djschmidt1 congratulations on your tumor shrinkage, wonderful news! Not sure about the diarrhea other than perhaps increasing fiber in diet as tolerated? I think there are anti nausea (anti motion sickness bracelets) that might help or aromatherapy.

  • moderators
    moderators Posts: 7,911
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    @djschmidt1 we're super glad to hear chemo is working so well! 🤩

    About the diarrhea, you may want to listen to this podcast to hear Dr. Wojciechowski explain why some people may be more prone to experiencing diarrhea, treatments for diarrhea, why it’s important to always report diarrhea to your doctor, and more. The podcast can be found here: https://www.breastcancer.org/podcast/diarrhea-basics

    Hope this helps!

    The Mods

  • aborayis
    aborayis Member Posts: 261
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    @izzyc123 yes, the ouch has subsided. Not on anything today. The expanders part of this whole business is, well, interesting. It looks like every PS has their own way of doing things. @snm has fantastic play-by-play info on them in her post “Tips for Bilateral Mastectomy with Immediate Tissue Expander AND Implant Exchange”. For me, they are always slightly uncomfortable, like wearing a tortoise shell bra that’s a size or two too small. I understand there’s a big relief felt with the permanent implants. I‘m looking forward to that!

  • snm
    snm Member Posts: 76
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    @aborayis yes the real implants are way more comfortable than the expanders but I did experience tight pectoralis muscles which caused some discomfort initially. Improved w physical therapy. My right and left implants are slightly asymmetric but my plastic surgeon said that they are sisters not twins! 🙃 Left one sits a bit more laterally than the right but don't think anyone can tell but me! Mine are partially under the pec so when I do chest exercises I can sometimes see ripples, which go away when pec muscles relax. I think cleavage area (can be tweaked more or less) but my doc said that is pretty much predetermined my your anatomy.

  • mssoda101
    mssoda101 Member Posts: 26
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    Hey guys! Still have the infection, but most swelling is going down… I’m still on the antibiotics and will stay on them till Weds, and I still have that red spot about the size of a quarter. I’m REALLY HOPING it goes away soon because I’m getting super worried about it being IBC. At this point my head is messing with me. It’s just wierd and causing me a bunch of stress! It’s been almost 3 weeks, but for now it’s a waiting game!

  • izzyc123
    izzyc123 Member Posts: 27
    edited February 20
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    @djschmidt1 is the diarrhea from chemo? I had a horrible time with diarrhea during my chemo (Taxotere/Carboplatin/Herceptin/Perjeta) and the one thing that helped me was cholestyramine powder. I think it's an off-label use for chemo diarrhea but it's used for lowering cholesterol and with bile acid malabsorption syndrome. It was a game changer for me when neither immodium nor lomotil helped.

    @mssoda101 I understand feeling like your head is messing with you. Hugs and prayers.

  • snm
    snm Member Posts: 76
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    @mssoda101 sorry that you have to go through this..hoping it is just a bump in the road for you and all will clear up soon.

    This whole cancer journey seems to be a mind game..with ups and downs. Think we can all relate when our minds mess with us.

  • aborayis
    aborayis Member Posts: 261
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    @izzyc123 I’m thinking of you today! Hope you’re doing OK. One more hurdle in this journey will be behind you! Sending hugs.

    @mssoda101 I totally get it, too. It’s always a lurking worry that plays with your mind. I’m glad you’re seeing some improvement and I hope it continues that way and eventually is gone.

  • mssoda101
    mssoda101 Member Posts: 26
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    @izzyc123 Thinking of you today as well! 💕 Soon you’ll be on the road to recovery! ❤️‍🩹

    @aborayis I think it’s still getting better, but I’m surprised how this thing is still being so tough, it’s been 3 weeks, crazy! Tomorrow morning is my last dose of antibiotics so we’ll see what happens after that… the red spot seems smaller for now, and I hope it stays that way!! I’m so tired of being tired and stressed😬😬 hey, if I don’t mind me asking, how old are you? I’m 44!

  • aborayis
    aborayis Member Posts: 261
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    @mssoda101 that is one stubborn little spot you’ve got there! I’m 56. Yesterday was a morning of infusion #3/11 of HP for me followed by another 90cc fill on each side by the plastic surgeon which was a bit painful. The combination wore me out. I slept through from most of the afternoon though this morning. I totally know what you mean about being tired of of being tired. I hope to get my energy level back soon. I’ve been slacking on my exercise routine and need to get back on the wagon. I have a feeling that will help once I get going again.

  • mssoda101
    mssoda101 Member Posts: 26
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    @aborayis It is very stubborn! I think it’s gotten a bit better just the last two days finally but time will tell. I go back in Monday for them to look at it and I’m sure it’ll just be like okay we’re seeing improvement and I’ll just go back home. If it keeps on then I’ll really start bugging my oncologist.

    We’re close in age, we’re all too young for this stuff! I still have a hard time wrapping my head around it but also feel very lucky too… found it early so that’s a blessing!

    I went straight to implants (I had implants prior and wanted to go smaller) so I didn’t have to do expanders, so I don’t know how those feel, but I’ve heard they’re very uncomfortable. How many more fills till your actual implants? That’s like another whole surgery right??

  • aborayis
    aborayis Member Posts: 261
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    @mssoda101 I think you’re going to beright about Monday’s appointment. Hopefully, it’s really on its way to being gone.

    i think I’m where I want to be in terms of expansions. Next appointment may involve over expansion but hopefully we’ll be measuring and selecting my implants. It is another surgery called exchange surgery but there’s less involved. It takes less time and has a short recovery time. And right away there’s relief from having new squishy implants in to replace the hard uncomfortable ones. I’m looking forward to it.

    @msn in your wonderful tips post, you mention exercise. I’d love to hear what your workout is like these days. I was doing Pilates twice a week and 30 minutes of high incline fast walking on the treadmill five times a week all through chemo but I have fallen off the wagon after my BMX six weeks ago and I need to get back into gear.

    Anyone else with a good routine that you’ve found helpful?

  • snm
    snm Member Posts: 76
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    @aborayis wow I'm so impressed that you were doing pilates during chemo! You are strong indeed!! I never had chemo so I can only imagine how difficult that must have been.

    Since folks are sharing ages, I'm 46 by the way! 🙃 Yes we are all too young for this journey but yet here we are!

    I had to go slow in terms of exercise. Walked on elliptical because it was freezing winter weather after BMX. Increased my completed mileage and incline gradually to build back endurance. Used physical therapy home exercises to help progress then to low impact (no bouncing around) for quite some time..then light weights and like core strengthening exercises but no planks/pushups. I'm 1 year out and I participate in online Beachbody exercise program - they offer various workouts which are convenient for me to do at home. I still however do not do full pushups or heavy chest exercises - still feel weak in chest muscles but that's ok. I have come a long way.

  • mssoda101
    mssoda101 Member Posts: 26
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    @snm & @aborayis you guys are both rock stars! I haven’t done anything really besides wrangling a toddler, lol. For me my left arm is harder to stretch, it’s like it’s tight or something.. and this was my good side… so I just do a lot of stretching and I’m kinda bummed my “good” left side is now just kind of affected, but it is what it is.

  • snm
    snm Member Posts: 76
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    @mssoda101

    Sorry to hear about your tight arm. For me my affected side feels tight as compared to the left- I notice it the most when I stretch my torso to the side with arm up. I'm not sure if this will help you but I've made a point to stretch out my rib cage (I lay on back with foam roller under my shoulder blades.. thoracic area and roll out my upper back) - this seems to help me. Maybe mine is due to pectoralis tightness which was really bad right after BMX but has improved. I think after chest surgery, I tend to hunch my shoulders so working on upper back exercises too.

    Caring for a toddler is no joke! That's a workout in itself!