ER-, PR-, Her2+ Roll call
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@catarina_fm Yay on having another down!!! Thanks so much for the encouragement. It would be really crazy if it were cancer. They did an ultrasound and mammo the day before surgery for the RFID marker (Sept 3 and surgery Sept 4). There was nothing there then and it's a pretty good sized area. My entire incision felt hard from day one. I'm keeping the faith!
Towards the end of my chemo, my MO said what she felt seemed like scar tissue. Surgeon said the same when chemo was done. And they were right - tumor was gone and no cancer! Only mentioned this because I wanted yall to know that even though you might still feel something, it could just be scar tissue from the tumor that chemo just killed!! (I worried because I could still feel something after #4 and was terrified the chemo didn't do it's thing!!)
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@beekaycro24 @catarina_fm and @jessybessy I’m thinking of you all as you make your way through your rounds! I’m so glad to hear it’s going okay and things are shrinking and progressing in a good direction!!
@grammie2 I hope everything’s ok with your lump! Do you talk to the MO yet?
I have a mssg in to my plastic surgeons office with the latest drain log. I’m still not at goal, but man am I so close! I’m pretty sure that’s what’s causing the bulk of my discomfort and random rashes and hives on my body. Lots of benedryl, over here! 💤Did I mention here yet that I went to the onc on Monday and pathology was in? I’ve achieved PCR! 💕 Suck it, cancer! 😝
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SOOO happy for you!!
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Hi guys. On day 4 after second TCHP and am feeling rough and a little hopeless. Would love to hear some stories from people thriving after all of this. At the moment it's a bit hard to see the light at the end of the tunnel.
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@jessybessy It's normal to feel this way, I've felt it too, it seems like it never ends... but now that I look back and I've already had 6 infusions (4 AC and 2 TCHP) I see that it's going away much faster than I expected. I'm on day 3 today after the second TCHP infusion, almost like you! For now I'm still fine because of the cortisone but I know that in a few hours I'll start to have pain in my bones and the side effects will come. But I also know that in a few days I'll be recovered, and you will be too! Try to be calm and to get through these worst days in the best way possible. Don't be discouraged! This will soon be behind us, for all of us, I hope! 🌷
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I felt exactly this way so often after that first round! Beyond weary. It’s a lot. You know what’s coming each round, and it’s like your own personal Groundhog Day saga. You get tired of feeling tired, and tired of life interrupted.
Now’s the time to really pamper yourself on the days that you can. For example, at the end of each chemo round, right before the new one, I’d take the most luxurious bubble bath I could. I tried to keep my fingernails and toenails painted. I bought the most bougie lotions I could afford. I’d drag myself outside to just sit and soak in the sunlight or have a healthy drink on my back porch. I didn’t feel up to self-pampering all the time, but did what I could when I could.
I also learned that this was the time to set boundaries and say no to things I just couldn’t mentally get behind. Use your energy for you and what makes YOU happy. And, when you’re tired, just go and take the nap. Everything else will still be there and can wait for another time!{{{hugs}}} 🩷 It will get better!
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@jessybessy, @bailey.boo and @catarina_fm both gave you good advice and I ditto those! It is hard at times because you know what to expect (mainly) and you can't help but feel a sense of dread. I remember the ones of us who are a little further along in the journey than you discuss exactly what you are saying. We talked about what baileyboo mentioned, listening to your favorite music, reading books. There were times when I was so weepy it took nothing to make me cry. Don't be hard on yourself either. We have a different energy level, new emotions to deal with, SE's that are uncomfortable, I know I didn't think clearly sometimes (chemo brain). At first I tried to continue on as "normal". It didn't work. I had to learn to accept that fact and take each day as it happened.
We are so glad that you reached out to us. Having this support group has made a world of difference for me and I pray it will you as well. Hugs and hugs !!
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@jessybessy I guess because it was something I did before chemo, I didn't think to mention. Journaling. And as a believer, I write down prayers and letters to God. I'm one of those where writing it down is easier than speaking. And it's almost as if once I journaled about an issue, I was able to put it out of my head or I was able to handle whatever the issue.
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Day 4 was hard for me this time, too. We're very close in our treatment. My 2nd round was Thursday. Friday, Saturday, and Sunday were great…I soaked in an epsom bath, went for a walk, we bought a car, I watched my beloved college football all day on Saturday. Then, Sunday….I slept….and slept…and slept. I'm pretty sure I only stayed awake long enough to eat, drink water, and bathroom trips. I made myself sit outside on the porch and soak up sunshine for 10 minutes. I even slept all through the night. Monday was better. "They" say days 3 and 4 after chemo are the worst. I also journal like grammie2. I am a go-getter and a I can do it myself-er. It is so hard for me to slow down and just chill. But, I have to listen to my body. If it needs rest, I rest. I try to do things sometimes and think…nope, not gonna do this. It's okay to not be okay. Chemo is full of bad things that are doing good work. It seems mucositis is going to be an ongoing battle and has affected my taste so hard. Everyone keeps saying eat what you want, but it tastes horrible so I might as well eat what's good for me. And even then, it's not great. My lunch today was skim milk with Carnation instant breakfast and 2 tablespoons of peanut butter mixed in. It was really good and high protein, but mentally I want actual food. But food sometimes tastes like pure rot. Don't feel too sorry for me, though. I did enjoy a rice krispy treat with it. idk why some things taste normal, but rice krispy treats I can taste. I guess I could smother peanut butter and raisins on them and call it a meal, right?
You are in my thoughts and prayers. I hope it gets better for you.
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@bailey.boo Woofreakinghoo!! Relish the PCR! Congratulations on achieving it!! That is FABULOUS news!
@jessybessy oh, yes, I remember being there, too. The infusions are really really tough. What you’re feeling and what you’re feeling about them are both so very normal. I remember just having an overall sense of feeling poisoned. 🤢 it really eventually at some point when it’s over goes away. Rest A LOT. Conserve your energy. Find little treats. I loved making smoothies with Ensure in them. Like @bailey.boo said, it’s a good time to make yourself learn to say no. Listen to your body when it needs to do nothing. Make note of the passage of time through the treatments. One third done, half way done, two thirds done, one more to go, etc.
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Thank you so much to everyone x
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I hope everyone had a great weekend! I have a question regarding facial skin care. I currently use CeraVee cleanser on my face and Clinique Moisture Surge moisturizer. However, my skin has changed SO much after two treatments. I have these little red, blotchy areas and dry patches. What's your go-to face cleanser and moisturizer?
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Hi everyone! How are you doing?
I am still feeling bad from my last infusion (Wednesday). My mouth and throat hurts and it is painful to eat. I was expecting this... I hope these bad days pass quickly.
@beekaycro24 I used cerave moisturizer before but I had to change because my skin was not loving it... My MO recommended La Roche Posay - Toleriane moisturizer. I love it! My skin tolerates it very well, there are days when I still have a little hives on my cheeks but I don't think I can escape it.
As for cleaning, I use Bioderma micellar water (Sensibio). It is very soft and cleans perfectly. I don't know if you have these products there, but I think so!
By the way, one question: as I said, the back of my mouth, especially my throat, is very sore. Do you consider this mucositis? I've been taking nystatin, it's true that it hasn't gotten worse but it hasn't improved either, but is there any point in taking it? It is the worst part for me... Sore mouth and a huge lack of taste.
Take care!
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Keep taking Nystatin. I am still taking it. If your mouth and throat are super sore, ask your onc for Magic Mouthwash prescription. It's basically Maalox with Lidocaine (and sometimes more Nystatin) added in. This go 'round, I'm not on the Magic Mouthwash as I don't have mouth pain, but I did get in touch with my onc about something more because it felt like the thrush was trying to come back even while on Nystatin. They called in a Rx for Diflucan. That has helped a lot! Thanks for the skin care recs…I'll see what I can find!
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@beekaycro24 thank you for the tips! I'll keep taking Nystatin, the truth is that last time it was much worse because I started taking it too late. This time it hurts but not too much. We don't have magic mouthwash here unfortunately 🥺 I am rinsing with other liquid but it is more to disinfect than take away the pain. Let's see if I get better soon.
Take care!
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@catarina_fm I had mouth pain with the first two as well, but was able to use the Magic Mouthwash. As beekaycro24 mentioned, a homemade version can be made using Maalox (don't sub any other antiacid) and liquid benedryl. I used the homemade until I could get the prescription. My mouth issues got better and would be a little tender for a couple of days, but nothing like after the first two.
@beekaycro24 same with the face skin issues! But as I just mentioned about the mouth, it did get better over time. I had one section literally peel like it had a sunburn. I stopped using any lotion, only a little vaseline the week after chemo. I would use normal stuff the next two weeks.
Hope everyone is doing well!!
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@grammie2 thank you! Can you give me the proportions of Maalox and benedryl? Is it 50/50? I think I'll do the mouthwash myself! I hope the last two infusions will be better too!
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Yes, equal parts. It actually worked pretty good. I guess the actual prescription one might have some antibiotic type product in it but not sure. That sore mouth is miserable!! Sorry you are having it, but maybe you will be like me and it will get less of an issue!!
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@grammie2 thank you so much! Tomorrow morning I'm going to the pharmacy to get the ingredients. It's getting complicated, it's hard to chew, it's hard to swallow the food, nothing has any flavor, washing my teeth without bleeding is mission impossible. Anyway... you've been through this too and at least it gives me some hope that I won't be so harsh on the 2 infusions I have left 🙏
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@catarina_fm I hope it will help!!!
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Yay and woo hoo to all those with shrinking tumors! I'm soooo happy to hear that! Keep it up!
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Hello! Definitely use La Roche Posay products for your skin, mine has been thanking me this time x
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I love all of you on this thread so much. Reading the exchange of tips like how to make a homemade version of Magic Mouthwash and sharing the La Roche Posay skin care product names warms my heart. It’s these seemingly little things which are actually very very big things that are a huge help to us all get through this tough process. Here’s to the power of connection and friendship. Love to you all! 🥰
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I totally agree!! Huge help and enjoy the new friendships!!
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Hi all, been following along dealing with hurricane stuff and now back to work for the time being until they release me in March. I feel for the ladies going through treatment, it was the hardest thing I’ve ever done BUT it was a success in the end, I pray the same for you. While I’m still having immunotherapy, I fully expected to magically feel better but recovery is a long road, I’m finding. Thanks for posting about the scar tissue as my breast is still tender 5 months post surgery. It’s certainly a journey and I’m deeply grateful for this group of warriors because most people just don’t understand. ❤️
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I've been on a couple of other threads, but just didn't have a connection the way I do with this group! @djschmidt1 I'm the same about recovery. It is taking way longer than I'd like for some of the SE's to leave! I'm just now feeling less tired, just in time to start radiation haha! Leg edema improving, but not gone. I have my second stand alone Phesgo shot Thursday and thankfully had no SE's from the 1st that was noticeable.
Yesterday I had my pre radiation scan and markings. Scheduled start date is Nov 4th, but she asked if they got the mapping (or whatever they do) done this week would I want to start next week. I was like YES! I want to get this over! She did say that after the RO reviewed the scans, it could alter treatment length. Praying it doesn't get longer than the 16 treatments! Three weeks and one day. I'm really dreading that drive every weekday!
I possibly have a seroma in the breast and RO is sending me to PT for evaluation. That is scheduled Friday. Also on Thursday, I see my surgeon for the seroma. RO thought it would be a good idea for her to take a look as well.
Anyone else in the radiation stage? I think a couple of you have finished that. @bailey.boo are you getting ready to start?
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Without a doubt, this group has been a blessing for me. I personally don't know anyone going through this and it's so good to be able to talk to someone who is going through the same thing and wants to help each other. I've already learned a lot! I have received valuable tips and above all, you all give me hope for better days ahead. I really hope that everyone gets through this and stays well! You are already like friends that I genuinely care about 🥰
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