ER-, PR-, Her2+ Roll call
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Hi all just checking in. I’m up for treatment 4 of 6 tomorrow and really excited to get done lol. I’m experiencing all kinds of side effects. Diarrhea has mostly subsided but I do feel nauseous the week after treatment. I get a rash from steroids which leaves about a day later, then I get white bumps about a week later. My finger tips are numb a lot and my fingernails are lifting. This week my muscles in mY legs started to hurt - like I’ve worked out sort of. I’m going to take fluids twice this week after chemo to see if I can flush the chemo out faster. Open to any suggestions anyone has for any of these weird side effects.
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djscmnidt - Sorry for the side effects. You should definitely tell your oncologist about the neuropathy (numb fingers). Mine wanted to reduce the drug dose. Sorry to hear about your fingernails. I kept my hands in dipped in ice during the infusions of tax & carbo so never lost finger nails. But I forgot to ice my toes the first time so my big toe nails lifted. 10 years later I hope they are finally re-attaching. Not sure what drugs you're getting.
It really made a difference when I had extra saline infusions for fluids. Hope that works for you.
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@djschmidt1 Hi! I’m so sorry you’re dealing with side effects. I was told about compression and cooling hands and feet as possibly helpful to prevent neuropathy and I used both with success. You’re more than half way through. Sending you hugs and strength.
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djschmidt - I didn't use compression, but I did take Igloo coolers full of ice and kept my fingers submerged for 15 minutes before, during & for 15 minutes after the infusions with Taxotere & Carboplatin. After the first time, I also submerged my toes in ice. I did not lose my fingernails and only the big toe nails lifted some but didn't peel off. I end up with some neuropathy in my feet & my fingers. I'm fortunate to have no pain - only lack of feeling.
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@ministwo thanks for that I may try it though I fear I’m too late having only two treatments left. One more question for all: my leg muscles are sore like I’ve worked out. I notice it mostly when I lift my legs and it’s mostly the quads…what the heck? I will also ask my NP today when I go for my shot. I’m so blessed by this forum. Thank you all.
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@djschmidt1 I got everything from Amazon…
Mediven sheer and soft 20-30 mmHg women’s closed toe compression socks
Ailaka medical compression arm sleeves (size up, they run very small)
Suzzipad cold therapy socks and hand ice packs cold gloves for chemotherapy
good luck!
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Hi Everyone,
I have my exchange surgery scheduled for 4/3. I’m finding myself looking forward to this step. I’ll be so glad to have these uncomfortable expanders out! I’ve also been hearing the aftermath of the surgery is relatively mild with a quick recovery. I’m mostly extremely grateful that I will be all recovered by the time I’m needed to welcome a new grandchild who is due in mid-May and be active in caring for the baby and my daughter.
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aboraysis - good news on the surgery schedule. Even 10 years out I still remember those hard "turtle shell" expanders. It's a wonderful relief to get them out.
djschmidt - sorry, I don't remember sore leg muscles. Hope you get a reasonable answer from your NP.
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Good luck @aborayis with your exchange surgery! Hope all goes well and you like what you see! It does definitely feel better than the expanders (no iron bra) but for me it feels like I'm always wearing a bra - a comfortable one- even when I'm not.
@djschmidt1 just curious what do folks do who have Raynaud's syndrome of their hands/feet. I'm guessing cold therapy during chemo might not be an option?
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@snm Thanks! My surgery got moved up to 4/2. I’m really excited. So interesting that you feel like you are always wearing a bra. A comfortable bra, I hope? 😊
I would tell someone with Raynaud’s to do compression socks, gloves and arm sleeves. Cold and compression therapy are being actively studies where I get my care at Columbia in NYC, and they are finding at least equal benefit.
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Five years down. I really don't feel much difference between right with water bag and left normal. Surprised that the nerves on the chest wall have so much sensation, to replace those in the skin. I guess that is the source of the normal feeling. Take care, and hopefully normal life will resume.
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@aborayis thank u for the latest on compression vs cold to prevent neuropathy. Sounds like you are at a cutting edge research place! Re feeling like a bra is always on comment- I don't get that feeling of being free and letting loose when taking off a normal bra (like I did pre-BMX & implants). Just feels like a comfortable bra is on all the time.
Hopefully it will feel like what @mcbaker describes with time! I already feel that some of my sensation has returned - can definitely feel light touch/pressure
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@aborayis and @mssoda101 Thanks for the good thoughts! Made it through and am now nursing my incision on my left side (had an area that was thin and wound up dying/scabbing immediately - could see it under the paper tape my plastic surgeon placed). If it's not one thing, it's another, right? I can't complain: the incision is intact, the right side looks really good and the only thing this has caused is for me to wait a bit on expander fill (I was filled to 300ml at time of placement). In the grand scheme, I'll take it.
How have you guys been?
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Hello everyone! My infection officially went away and that spot was resolved by 3/5… took a while for sure, a little over a month, but at least it’s gone. We’ve been so busy having a horse barn built so I’ve been really busy with that, and on Monday the arena will start, so I’m really really excited and have been trying to catch up here so that’s why I’m slow lol
@izzyc123 I swear it’s always something!! But at least it’s relatively minor like you said so that’s really good. I hope you heal soon and the rest goes smooth! :)
@aborayis your surgery is soon! Then onto healing you go and just one more step to move past all this… looks like you and I end our HP around the same time… I think 7/11 is my last infusion. Bittersweet for sure, but I still have a few months at least.
@djschmidt1 I’m so sorry your side effects are still bothering you, but you you’re almost to the other side, we’re rooting for you! :)
@snm I feel like I’ll never get any sensation back.. it all feels so wierd, is yours coming back or has it been the same since after your surgery?
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Is there anyone who can share some success stories of Her2 recurrence? How did treatments change? How was it second time around? How are you continuing to monitor yourself?
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@hopeful2020 Following this as it’s in the back of mY mind and I’m not even thru treatment yet.
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@djschmidt1 - what did you have!? How far are you with treatment?
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@hopeful2020 I am stage 2A ER-PR- Her2+ and I have completed 4 of 6 adjuvant chemo treatments since my tumor was 2cm+. I will be up for lumpectomy probably June timeframe, so fas we know, no node involvement. After surgery, I will have radiation for 6 weeks and 12 weeks of immunotherapy planned with perjeta and herceptin. I was diagnosed Dec 2023 started chemo 1/15.
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@mssoda101 A horse barn wow! So glad to hear that infection has resolved fully! Regarding sensation, I have no nipples and bilateral implants. I do feel like I have some sensation back. I can feel light pressure over my Barbie boobies but still numb. I have sensation over cleavage area.
@hopeful2020 recurrence has been on my mind too! Hoping someone can share their story. I was treated with BMX for high grade DCIS and 1.3 mm invasive focus, all on left side. Oncology did not recommend anything else as it was a single focus with no lymph node involvement. I do get anxious about the possibility of distant Mets but I have to remind myself 95% of folks do fine in my situation.
Has anyone thought of getting tattoos? I was thinking of nipple tattoos or a decorative tattoo but I don't know if it would be affected if I need more treatment in future. Maybe should wait at least 5 years?
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Hi @izzyc123 !! I’m so glad you’re on the other side of that surgery, and sorry you have had to deal with an issue. It IS always something. (Do I detect two fellow Roseanne Rosanneadana fans @izzyc123 and @mssoda101 ?😊) I wish you continued healing. How’s the rest of your body handling things?
@mssoda101 That is fantastic news! And what a long road that was. I’m happy it’s over and that it wasn’t more than an infection in the end. A horse barn and arena! That is so exciting! I hope being busy with that is as gratifying as it sounds, and that it fills your mind and heart with lots of good stuff. Hey, yes, you’re right. We’re marching almost in lockstep with each other. Thanks for your good wishes. Starting the countdown…
@hopeful2020 Hi! I’m also in treatment now and definitely worry about whether I will face a recurrence. I tell myself it’s very unlikely. I also follow threads here on her2+ recurrences and success stories.
@snm I’m thinking of getting nipples and having them tattooed. That’s an interesting thought, to wait 5 years. There’s some sense to it, for sure. My initial feeling is to get it done when possible to enjoy the look and not wait, especially given the low recurrence rate. I wonder what my PS thinks about this? I’m going to ask.
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I had a tat on my right side. They use a specially formulated ink that apparently does not migrate to lymph nodes, so there is no problem in case of a recurrence. It also made a little bump on my implant, but that has migrated with weight loss to below the tat. They also fade more quickly than regular tats. My surgeon's NP did it. It is nice early on, but as you get used to the differences, not really necessary. Definitely do not wait five years. Even with my celibate lifestyle it was psychologically soothing. I nursed my babies, so having breasts is an important part of my self-image.
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@aborayis Oh please let us know what your PS says about tattoos, treatment etc! I'm looking forward to the response.
@mcbaker thanks for the input about taking the tattoo nipple plunge! My husband says he doesn't really care one way or the either. It's been 1 year since my surgery and I feel like I've gotten use to no nipples...but wonder if it might be better for me psychologically with the tattoos...feel sexier??
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Best way for you to feel sexier is your husband. 😂
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He will like it. He has probably been told so may times to accept you as you are, that his "not caring" is an automatic response.
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I cast one more vote for adding spice!
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Hi Everyone, I had my exchange surgery this morning and I can tell those who have it up and coming it really is SO much easier of a surgery. I feel more comfortable already and have just really minor discomfort sometimes. Otherwise, I can move easily. My arms aren’t restricted. And it was so quick. The surgery started at 7:30 and was done and dusted by 9. I was home relaxing on the couch by 11. I work from home and I could definitely work tomorrow. I did give myself the week off, though, and have no regrets over taking it easy while I recover.
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