ER-, PR-, Her2+ Roll call
Comments
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@catarina_fm I had 22 sessions of radiation after a PCR and no lymph involvement. Radiation wasnt as bad as chemo. I was fine until the third week and the skin was itchy and slightly tender like a sunburn. I used only aquaphor as recommended by my radiologist. It truly didnt bother me until after I was done and it wasn't awful just itchy, peely and tender.
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@djschmidt1 thank you! I also saw Aquaphor, but my doctor recommended a cream from Isdin for irradiated skin, which is probably pretty much the same thing. Okay... Let’s see how it goes for me. I think the number of radiation sessions depends not only on the extent of the affected lymph nodes but also on the equipment itself and even the radiation technique (from what I understand, there are several). I’m anxious to start and especially to finish! 😁
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@catarina_fm I was nervous about radiation as well. It wasn't horrible and my skin faired pretty well. I didn't have any blistering, very little peeling. I had intense itching though! Lasted about a week. I started slathering aloe (kind you use for sunburn) and that actually seemed to be what helped the most. I still used the prescription creme in the mornings. Other than getting pretty tired around treatment #10, it really wasn't too bad.
Interesting about the Phesgo. I started back about the same time as I started radiation (which was about 4 weeks post surgery). I'm getting Phesgo. @beekaycro24 have you been told what you will do?
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@grammie2 Not yet. My onc only mentioned Herceptin through my port i PCR and Kadcyla if not. No one has mentioned radiation lately, only saying it is part of protocol after a lumpectomy. I go to my onc on February 6th to start my immunotherapy, so I guess I'll find out then. I'm hoping to have the pathology report before then…idk how long it will take to complete after surgery.
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@beekaycro24 I think they usually like to start radiation around 4 weeks post surgery. That's really interesting about the Phesgo and Herceptin only. I'm fine with getting Phesgo and so far I'm having minor SE's (runny nose occasionally, some tiredness, fluid retention-but not as bad as during chemo). Hoping some other folks chime in about this too!
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I found this on Reddit about breast cancer from 8 months ago:
It seems that they are already following this protocol in America as well (at least in some hospitals); I believe it must be standard.
By the way, as a follow-up to the answers, I found this about Kadcyla. I hope it can help reassure @jessybessy and @beekaycro24 if they don't achieve PCR. Good news 😊2 -
Yea it seems it's not too bad for most people so am feeling a bit better about it 😀 Hope you're good lovely lady x
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Thanks for the info on Phesgo! Perjeta seems to be a culprit of some not so great SE's. Maybe I fell somewhere in the protocol change?? So far my ECHO's have stayed steady. My MO did say if I started having any adverse effects from Perjeta, they would just do Herceptin. Looking at stats, Perjeta does have some beneficial attributes in the long term recurrence episodes. Will just have to pray hard my heart doesn't decide it didn't like getting Perjeta.
While I am confident you ladies awaiting the pCR results will have achieved it, I am thankful Kadcyla is an option out there!!! Praise God for all of the advances in fighting this evil thing called breast cancer!!!!
Love and hugs and hope everyone has had a wonderful weekend! I for one am dreading work tomorrow LOL.
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@grammie2 I want more time off too. After march 28, I will be out of work. I plan to take some time off before I go looking for a consultant job. I’m honestly having trouble wrapping my brain around being done with treatment in 3 weeks. Oddly, I am not that excited, I would describe how I feel as pessimistic which is out of character for me. I sorta feel like cancer is sitting over my head.
Any veterans feel this way?
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@djschmidt1 Yay on being done in 3 weeks!!! And enjoy your stretch in between jobs!!
I'm not a veteran for sure, but I think I will be feeling a lot like you the closer I get to April and being done with Phesgo. I was so sad after completing radiation and not feeling a huge weight gone! I didn't feel excited after chemo and chalked that up to I still have surgery to go. Same with surgery. I still have radiation to go. Radiation done and nothing. Still have the Phesgo shots until April….. but I honestly don't think I will be all giddy about being done with Phesgo either. Don't get me wrong. At the end of each step I was glad to have that part over. Hopefully someone will shed some light on these emotions!!
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Hello again! How many Phesgo shots did you have? I'll be taking 17 Herceptin injections every three weeks, starting tomorrow. That's almost a year! The last one will be on December 30th. I'm still waiting to be scheduled for radiotherapy, which was also supposed to start this week.
For me, the greatest relief was when I finished surgery. If everything went well, the cancer was already removed from my body, and the following treatments are just an extra precaution. But I think it’s normal not to feel the weight completely lifted because, unfortunately, we’ll always have that fear... We must try to do things we enjoy, make the most of life, and live as calmly and healthily as possible.
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Hi all! Surgery went great and I'm home!! My surgeon did not send me home in a bra or any type of bandaging other than steri-strips. He did say to put on a bra when I got home. The ride home wasn't bad and I'm not in a lot of pain. I actually have two front-zip sports bras and put one on as soon as I got home. My incisions are not where or how I thought they would be. They are both close to my under arm. The bruising will probably look horrific tomorrow, as some is already starting today. Funny story - I've been dreading going to the bathroom just because of the movement of wiping since I'm right-handed and this involved my right breast/side. I went right after putting on my bra, did my business and was walking out of the bathroom when the hubs said, "Did you wipe?" I realized I had wiped without thinking about it and NO paid whatsoever! I now feel so much better about my recovery…lol.
Thank you all for your prayers and good thoughts! I could feel them. It was so very comforting when my surgeon prayed over me in pre-op, as my medical team has been in my prayers since day 1. :)
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Yaaay well done hun x
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@catarina_fm if I have it calculated correctly, when finished in April, I will have had 15 Phesgo injections. They kept me off of from the last chemo through surgery and started back about the same time as radiation. So roughly 8 weeks of no injections.
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@beekaycro24 How are you today? You sound like a trooper!! I hope you’re doing as well as you sounded the day after surgery.
@jessybessy And how about you? I want to echo everyone’s sound advice and encouragement. Keeping the positive vibes headed in your direction for good pathology results for both of you!
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@beekaycro24 I hope you're doing well! Did you manage to sleep well? For me, it was the worst because I really don’t like sleeping on my back 😅 By the way, after surgery they also took me to the hospital room without a bra and only put it on me afterward. From that point, it was 24/7 with a bra for two weeks. Wishing you a smooth recovery! 💪
@grammie2 this Friday marks six weeks since my surgery, and today I had my first trastuzumab. So far, no side effects! In 2 days I’ll have another radiotherapy consultation where the doctor will confirm my treatment plan. I’m not sure if I’ll start that day or on monday. From what I’ve seen, starting radiotherapy between 4 to 8 weeks after surgery is the recommendation. I also saw that 15 treatments with Phesgo is the usual and that if it’s just trastuzumab, it might be a little more. That matches our cases!
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I am amazed at how good I feel! I actually got out and walked today. My legs have been like jello since my last treatment - neuropathy hit hard. They're also a little puffy (edemic), so I'm trying to increase my movement. Granted, I didn't walk far or fast, but I did it. I have to start somewhere, right? I slept well last night. I have an adjustable bed and occasionally sleep in the "zero gravity" mode, so that's what I used last night. I did try to sleep on my left side for a little bit, but I guess gravity caused my right breast to move a little so I flipped back to my back. I'm wearing a sports bra that fastens in the front, but I might see if I can wear one of my regular sports bras since they are a little tighter…IF I can get it on. I'm a little tender in the area on my side (way below my incisions), which is also where the most bruising is. I haven't had to take any Tramadol (pain pill), taking only two 500mg Acetaminophen every 4 hours, and one Meloxicam once a day. The Meloxicam is what my surgeon said to make sure I take. I Googled it and it's the strongest pain pill for osteoarthritis patients and is also an anti-inflammatory drug - which is probably why the surgeon said to make sure I take it. I told my husband I think feeling so good is due to my body being happy that horrible tumor is gone, or it's a mental thing. I don't know. But he and I are both amazed at the difference. I mean…one day out from surgery and this is the best I have felt in a long time. I go on the 6th for my Herceptin infusion (I've actually been on Ogivrie for my TCHP treatments, so not sure if it will be Herceptin or Ogivrie IF I'm PCR) and my post-surgery appt. They are in the same building and one floor from each other, so not a bad set up. My taste buds are slowly coming back…still can't do breads or fried foods, but those are super bad for me anyway. I have ZERO eyelashes on my left eye (it looks so weird) and only two eyelashes on my right eye. Half of my left eyebrow is missing as well. While I've enjoyed being bald, I am SO ready for my hair to start coming back. My eyes have stopped watering and no more nose drip. I'm going to be so mad if they come back after my infusion.
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@beekaycro24 yay you!! It's amazing how much better you feel with time and the chemo and steroids leaving your body!! I'm with you on the hair! I'm getting super excited for mine to grow out!
@catarina_fm good you are not having SE's !!
@jessybessy how are you feeling? Surgery in a week, right? I know you are ready to get that behind you!
@smn , @djschmidt1 how are yall doing?
So glad to have all of you to chat with!!
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@beekaycro24 I am so happy for you! The recovery is really smooth 😊 Just 2 or 3 days after surgery I went to the supermarket, and I walked almost every day—it’s really good for us to move! and you’ll see, you’ll improve very quickly 💪 after 1 week I was already wearing regular clothes without buttons. However, you might start feeling your arm “stiff,” and there are some simple exercises you can do to regain mobility. You can talk to your doctor at your post-op appointment if you feel you need them. I did a few exercises for a few days, and I was back to 100% in no time. Don’t you have drains either?
I didn’t recognize the name Ogivrie, so I looked it up, and I think it must be the injection I had today 😅 it’s trastuzumab too, but specifically for injection.
Wishing you a continued smooth recovery—keep us updated on how you’re doing 😊
I finished my last chemo on November 27, and only now, two months later, I’m starting to see my eyebrows, lashes, and hair growing back (I lost all of them and it makes me look really sick). I really don’t like being bald, I had hair down to the middle of my back and it was such a shock. That’s why I’m so eager for my curls to grow back.My sense of taste returned almost immediately after my surgery, and it’s been nearly 100% for quite a while now 🙏 It’s so good to feel the body returning to normal!
I’m also curious to see if I’ll end up with a runny nose because of Herceptin. Let’s see! For now, everything’s fine 😁
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@catarina_fm No drains. Two small incisions near my underarm, no stitches…just glue & steristrips. I was looking over my operation notes last night and my surgeon used electrocautery to remove my tumor. I have no idea how they remove lymph nodes, but he only took out the three that looked suspicious at my first ultrasound (only one biopsied and it was negative). I hope your hair starts growing soon. My husband shaved his head when mine was buzz-cut. He has since let it grow back and it grew so fast. I guess I think mine should be that way. These cancer drugs don't play. As for the Ogivrie, it's a Herceptin bio-similar, meaning it works as well as Herceptin just in a little bit of a different way. It is the same trastuzumab, just works differently.? I don't understand the science, just grateful for those that do.
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I didn’t have drains or stitches either, just glue 😊. I still had some swelling for a few days, but no bruises. Each day that passed, I felt more 'normal.' The scars are great—I started moisturizing as soon as I removed the dressings. I also hope your hair grows back quickly. You’ll see that in just a few days, your lashes will start to come back almost all at once 😁. I started noticing little dots, and suddenly, lots of lashes started sprouting.
Haha, I’m a biologist and have always worked in research. Although I work with antibiotic resistance, which isn’t exactly the same field, I’m always looking for information on everything. Herceptin and trastuzumab are the same thing. Ogivri is a stabilized version of trastuzumab that can be prepared for injection (because for injections, it’s diluted in less liquid than for IV infusion and the formula needs to be slightly different)
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@beekaycro24 Super! You are so done with surgery!! Woo woo! Great to hear that you are doing well post-op! I have no idea what Zero gravity mode is but it sounds amazing - like floating on clouds!
@grammie2 hope you are doing well. I've had it rough for couple weeks since my thyroid was out of whack plus a flu/cold but now finally feeling better. I just hope my overactive thyroid stays away. Have to get labs here soon n then need to see endocrinologist. I feel like once thing gets fixed something else pops up like a toothache (which I also had but went away!)
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Hi everyone. So have finally managed to speak to onco after post chemo MRI results.
The MRI showed that my lymph nodes have (hopefully) resolved but that the total extent/surface area of my small, but wide reaching, multicentric tumours (HER2+/hormone neg) hasn’t shrunk as much as she’d hoped. Overall, it’s shrunk everything by about 61%. The first three seemed to do a lot more than the last three, which only shrank everything by about 11%.
I think my onco was a bit harassed/very busy today and had to deliver some bad news to someone earlier in the morning, so didn’t seem as upbeat as she usually is. She did explain that what is showing up on the MRI could just be scar tissue or inflammation (which many of you have also said).
She explained that if what remains is residual (and that I’m at a high risk of recurrence) then I will go on Kadcyla for a year. H&P if complete response. She essentially said that she can’t comment on anything until pathology from surgery comes back.
I think they’re a little confused as none of the little tumours are palpable by hand (and haven’t been since the first round of TCHP, which seemed to have such an instant effect). My boob also had an inverted nipple before treatment started, which has resolved itself, etc.
Am having an SMX with expander placement next Thursday. Just feeling super deflated at the moment. Really want to be able to move on feeling that this is a horrible nightmare I will wake up from one day, but am not really feeling that right now.
Sorry - rambling.
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@jessybessy Your after surgery pathology report is going to be the telling point. I'm the same as you…my tumor measured smaller than it felt. My surgeon thought it was 5-7cm, but it measured at 3.9 on the ultrasound and 4.5 on the mri. I only had a shrinkage of 17%, according to my last ultrasound, but you could not feel it. I'm still waiting on my pathology report from surgery. I know that no matter what it says, there is a plan in place. No matter which treatment I'm assigned, I'm okay with it. Whether it's Herceptin only or Kadcyla. A lot of people have to go on Kadcyla and are thriving and cancer free. You're going to be okay. WE are going to be okay. Praying for you, fellow fighter!
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Absolutely sweetie and right back at you x
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@jessybessy and @beekaycro24obviously, it's best if you achieve PCR (I'm really rooting for that), but even if you don't, Kadcyla is amazing at destroying any residual disease! And apparently, the side effects are very mild. You're going to be fine—we all are! Cancer has no idea who it’s messing with 😡💪
@jessybessy so, in case of PCR, you'll be receiving H&P and not just H, like some of us. Some doctors still choose to give both antibodies—I don’t know if there’s a specific reason or if it’s just a preference. Don't be discouraged, dear. The most important thing is that soon you'll be waking up from your surgery, free of this. The rest will be much simpler! 🌷
@beekaycro24 how are you? I hope you are doing well 🙏
@snm that's not being easy! you’ll see that from now on, everything will be fine, and nothing else will show up 🙏
As for me, my nose is running—it seems like I have an allergy, probably a side effect of yesterday's Herceptin. Let's see if this continues with the next infusions or if it improves over time. But honestly, if this is the only side effect, I'll be very happy!
Tomorrow is my first radiation!
Big hug to everyone! Take care! 🍀🌹
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Hello! Yea surgery one week today, eep! X
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Hello everyone!
I had my first radiation session, and I didn’t like it 😅 Apparently, when I did the planning CT scan, I was very tense (because the CT room is cold, and I remember feeling really cold), so today, when they tried to align me and took the images, they were quite different 😅
Basically, I had to try to stay tense the whole time - to ensure reproducibility, and it took several attempts to get the same alignment as the CT scan. As a result, I was in that position for over half an hour, completely tensed up, inhaling, holding my breath, exhaling—countless times. I just hope the next sessions are easier because I left there with terrible back pain 😮💨
I was expecting something simpler, and I’m exhausted! At least you don’t feel anything during the process. As soon as I finished, I applied the special moisturizer for irradiated skin and wore a cotton shirt under my bra, as recommended.
Other than that, how are you all doing? Sending you a big hug!
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Hey! Sorry the first one was difficult! I think mine was as well. But generally from the time they put me on the table, to the time I got up was only about 5 minutes. I do remember a couple of sessions when I was really nervous it took longer and it seems I had to hold my breath more than normal. I would say try to relax, but I think that is opposite of what you need LOL. First one down!!
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Oh and @catarina_fm the runny nose could likely be a SE! I have it for a few days as well! I had used a homemade rosemary rinse a friend gave me and the next day my nose dripped forever. I thought I must be allergic to that. Only used it the one time but still have a drippy nose the week after Phesgo. This time it wasn't as bad so hoping my body is coping with it better. I still take Claritin every day but dropped my normal Allegra that I took before chemo. Decided both was too much and Claritin seemed to help several things during treatment.
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