ER-, PR-, Her2+ Roll call
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Where is everyone?? Hope everyone is doing ok!! I'm feeling much better this week, almost 2 weeks post last treatment. Curious if anyone who has finished TCHP has any advice on hair regrowth and what was your experience on when you saw it to start to grow. I have areas that has zilch. And then areas that is very sparse that never went away. Yes, anxious.
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Grammie - I had TCHP, then surgery, then AC, then radiation and finally the rest of the year on Herceptin. I'm just about 10 years out from the last treatment.
I lost all my hair everywhere. Hair on my head came back fully but now it's more straight than wavy. I've had it trimmed a couple of times and it's still down to my waist. Unfortunately the hair on my legs came back, but the hair under my arms never did (and that's wonderful) I think I have more hair on my forearms, but it's mostly light blond so I ignore it.
My doc put me on Biotin capsules, which I took for several years. I think they helped. Hang in there.
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hey! I’m around. But I’m woefully behind on my boards. I’m so glad you’re on the other side of chemo now @grammie2! Woohoo! My last TCHP chemo is next Thursday, on 8/29. I’m feeling so relieved and excited to be hopefully done with chemo soon!
I met with my plastic surgeon a couple of weeks back…. I think I’ve checked in since then. Then I met with my main oncologist for pre-op this week, and she got my surgery date moved back up to Oct 1st 🙂 I feel so much better with that date (vs. Oct 8th), as she originally said I needed to have my surgery within the window of 9/23-10/1 to avoid cancer regrowth. The re-adjusted date puts a wrench in my social events that I went ahead and planned in the meantime, but there will be plenty of time for that next year. So I will not be sending off “the girls” in a low-cut masquerade ball gown after all.
I met with a physical therapist for the first time today, just to get established with a starting baseline. She seems great too, and she’s a breast cancer survivor herself.
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I hope you sprout a full head of gorgeous chemo curls very soon!! 💕
It’s so funny how I am finally just now really feeling comfy about wigs and it’s time to think about regrowth!
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@minustwo so nice to hear from someone long past where I am in this journey!!! I agree on the leg and armpit hairs LOL. I could do without those! I haven't lost all of my brows, eyelashes thinned but almost all gone on the left bottom. My head is pretty funny looking. Totally bald spots with strands in areas. I buzzed it after the first chemo and the strands that stayed didn't really grow a lot longer until recently. I'm worried about those blank spots….smooth as a baby's bottom with no signs of anything :(
Do you mind me asking why you needed AC afterwards? My plan now that TCHP is done: surgery, radiation, then Phesgo (Herceptin/Perjeta) for 12-16 months. I still haven't met with a radiologist and not sure how many weeks of that I will have.
@bailey.boo glad you are getting everything lined up! Sorry you will miss out on some things, but you will make up for it afterwards I'm sure!!! Curious you mentioned the time frame between chemo and surgery. I wasn't told anything regarding why they had a specific time to do surgery. My last chemo was the August 8th and surgery is scheduled for Sept. 4th. So basically 4 weeks. Hope that is quick enough!!! Both the oncologists and surgeon were super happy with their physical exam of the breast and node!!! Of course my surgeon was quick to point out that her biopsy following surgery would show a single cancer cell LOL.
Has anyone had the radioactive seed planted? I have that for node and breast the day before surgery. Sounds to be as uncomfortable as the biopsy. Ugh.
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I was told the cancer can potentially start growing again during the time between the last chemo session and surgery. The risk of this happening depends on factors including the type and aggressiveness of the cancer, how well it responded to chemo, and overall health. So, the timing between your last chemo session and surgery is typically planned to minimize risk of cancer regrowth while allowing your body to heal from the chemo before undergoing surgery. For reference, my last chemo is scheduled for 8/29, with surgery scheduled on 10/1, so 4.5 weeks.
The med onc and main onc both examined my breasts and seemed really pleased too! I’m hopeful! I’m still not thrilled I had to wait so long to get biopsied, being told “oh! It can’t grow that fast!” Only to find out from my main onc, “yes, it can and HAS grown that fast for you, and another month, you’d have been in the hospital peppered with it for sure!” I still have nightmares it has exploded everywhere. I spend a lot of time trying to consciously counter that and visualize the chemo irradiating all specks of cancer!
Does radioactive seed equal savi scout? I’ve had those placed, I guess over a month or so ago now.
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I googled Savi scout and sounds similar except mine is radioactive and yours isn't. Interesting how surgeons do different things. Mine has to be done the day before surgery and they put one where the marker in the breast and node are.
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Grammie - all my treatment was for a recurrence in a lymph node two years after I had a bilateral mastectomy with clear margins & needed no other treatment. But, two years later…. cancer in the lymph nodes. After TCHP, I had surgery and there was still some questions about clear margins. That's why the AC before radiation. To be fair, I was only able to complete 3 of the 4 AC infusions. That really made me sick.
I do know that hair re-growth is an individual thing, but most of us are lucky with full re-growth. Do ask about taking Biotin. May be a myth but I think it really helped me.
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Hello girls!
I was reading your posts, I had no idea there was such a tight deadline to have surgery after chemo. I don't know if in Portugal I will be lucky enough to be able to have the surgery during this period, as the healthcare system here is completely free, there is usually a slight delay as there are a lot of people due for surgery. If in my case these 4 weeks are fulfilled, then my surgery will be right after Christmas, as my last infusion is scheduled for the end of November.@grammie2 and @bailey.boo oh my god radioactive seeds?? In my case, markers were already placed on the edges of the tumor and I thought it was not necessary to place anything else before surgery! I'm wrong, right? They'll probably put these things on me too... does anyone know what they're for, since I already have the markers? @bailey.boo Sometimes I also have nightmares just thinking that my cancer may have metastasized between my PET scan and the start of chemotherapy (I waited 1 month and a half). My tumor is so aggressive that I'm so afraid this happened... I try to focus on the positive cases, of course, but sometimes it's difficult.
Thank you girls for your updates!
I had 3 AC infusions so far and apart from a lot of horrible nausea and a lot of tiredness, which goes away after a week, I have been relatively normal... I got sick of a lot of smells and I feel aversion when I see drinks or liquids the color of my red chemotherapy bag, it immediately makes me feel sick 😅
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hi all! I am two weeks out from radiation and although it was nothing like chemo the after effects weren’t terrific - think itchy sunburn with muscle/breast pain. I am still doing herceptin/perjeta every three weeks through February. I had surgery (lumpectomy) 4 weeks after my last chemo and did just fine. As for hair regrowing, it took a bit for it to start back and i had a few bald areas for a little bit. I was
concerned but it filled in nicely. Finished chemo (4/29) and hair was grown in nicely by july so it takes a bit. It is still very short all over. I will try to add a few pics to show the differences.
First ingot the white hair that felt like fluff. You can see the last one is my normal hair but its filling in.
This is this morning:
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@djschmidt1 nice hair!!! Yeah, I'm worried about some of my totally smooth spots with no sign of anything LOL. Thanks for the encouragement!!
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@grammie2 it will come back! I was completely bald except for the back and sides which hung on the entire time. I looked like an old man…w male pattern baldness. Hehe
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Hi! I keep telling myself it’s totally normal to feel anxious, especially with everything happening so fast, and all of this treatment IS working. They’ve come so far with treatments, and breast cancer today gets tons of research and attention.
I didn’t know there were also radioactive seeds! I know the markers help our surgical team be super precise. I feel like all I do is read and read, and I’m still learning more by the day! Let us know what your doctor to has planned!
I’ve heard about “red devil.” I’m sorry you are going through that. The nausea and fatigue sound rough, although I’m glad that it eases up for you after a week! I do know what you mean about the smell and aversions—it’s like your body just instantly associates them with chemo. I hope it gets a bit easier as you go. 🩷
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Hi @djschmidt1! You sound like you’re doing great! I’m so glad to hear that you’re on the other side of surgery and healing. The radiation side effects sound tough, but I’m glad it wasn’t as bad as chemo for you. I’m hoping the same for me! Seeing your progress is so encouraging—and thanks for sharing the pics—your hair is filling in really nicely!
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@catarina_fm and @bailey.boo - I have markers that were placed during biopsy as well. I understand the radioactive seed/clip is placed near the marker and sends a signal to the surgeon during surgery so they know they are removing the correct area. The one bailey.boo has uses infrared from what I understand. These markers are chipped and are removed with the tissue/lymph nodes for biopsy.
Anyone wear glasses? I was told not to go have my eyes checked during chemo. Were you told how long to wait? My eyes have gotten weaker and working every day on the computer is starting to give me headaches. I need to go, but don't want to go until my eyes are recovered from the chemo.
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Thanks! And you described my husband😁🤣
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@djschmidt1 hair looks nice- hope the texture hasn't changed much for you! Did you cold cap it? If yes, How was that experience for you?
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Happy Sunday! I’m a ways off from this part of my journey, but my physical therapist recommends wearing a compression sleeve throughout my radiation when the time comes, regardless of node pathology outcome. Anyone heard of this?
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Bailey - I did NOT wear a compression sleeve until later in my recovery when I developed lymphadema. But it was the radiologist who finally diagnosed it. By all means - wear the sleeve. It's little enough to do to attempt to prevent long term issues.
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@bailey.boo and @minustwo I haven't met with my radiologist yet. So thanks for sharing the info on the compression sleeve. This is one of my fears in developing lymphadema. I'm prone to fluid retention anyway and have feet, ankle and leg swelling (still) since my last chemo on the 8th. Ready for it to be gone!
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Hey! For those in this group with upcoming radiation, I found a group called "2024 Summer/Fall Radiation". I know how helpful this group has been and I'm trying to learn what I can about radiation.
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Hi folks. Anyone applied for short term disability? I have a plan through work and wondering if I should apply for it before surgery and radiation. I managed to work during chemo, but honestly it was pretty tough. I thought I owed my employer this, but now, not so sure it is worth the health implications of trying to work and recover at the same time. It is an office job, but with that comes stress. Radiation will be 5 days a week and not sure how long until I meet with the radiologist.
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Hi @grammie2! Not me. I’m with a very small govt contractor now, and I have no FMLA or disability coverage. But I’m also a remote worker, so I can literally work from bed if I need to. I’m taking 2 full weeks of vacation for surgery and recovery. I’ll still have use-or-lose vacation and sick time before the end of the year, so I can cut into my planned holiday time off for some wiggle room if complications happen or radiation throws me for a loop.
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I’m sitting at the cancer center, about to get my 6th and final round of TCHP! My platelets and blood counts were so low they were debating on delaying chemo for a week. But they came up enough!
Yesterday morning, I had my pre-op diagnostic mammo and ultrasound. I just got my results. I had a combination of a small “partial response” (one area shrunk 2mm) but it was mostly only a “stable disease response” to neoadjuvant chemo. So it looks like the cancer has not progressed, which is a huge positive but, as the AI program I ran the first and latest reports through concluded, the results are “not necessarily poor.” 😫 AI’s attempt at empathy and cheering a person up? 😁 I am feeling so ready to do this surgery on 10/1 and radiation after– bring it on!
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@bailey.boo so glad you were able to get that final chemo!! Go you for being positive and staying focused on kicking butt! And I'm not sold on AI and the info there. What does "stable disease response" mean? My surgeon is not doing any pre surgery testing other than the normal bloodwork and the radioactive seed/clip placement in the breast and node (which are already marked from biopsy). Both the onc and surgeon felt where the tumor was and the node. They were in agreement that nothing could be felt. I know you had something similar to the radioactive seed done. Was it painful? As bad as the biopsy (which wasn't necessarily painful, but super uncomfortable).
Did you find out any more info on the compression sleeve during radiation? I'm going to ask about that when I meet the radiologist. Thanks!!
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Hi all. Newbie diagnosed here and absolutely clueless right now. I don't know even know the type or stage right now. Surgeon called and said I was ER/PR negative, but HER2 positive and it was an aggressive cancer, however, HER2 positive "usually" responds well to chemo. I have an oncologist appointment on Sept. 9th and should know more then. I'm not freaking out yet but hubby is. I think I'm just numb and in need of more info for all of this to really set in. Google is SO scary!
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@beekaycro24 big hugs to you! Being newly diagnosed is def. scary and hard! I am not to far in, diagnosed in March. I didn't believe it when someone said that it will get easier once you know details and have a plan in place. They were right. Once I had the biopsy, met with the surgeon who referred me to my oncologist, and she laid out a plan, I handled it all much better. Google is scary and one of the first things both my surgeon and oncologist told me was not to look at statistics for HER2+ cancer. Immunotherapy has not been around long enough and statistics have not caught up with how great it's working to fight the HER2 gene. My 3 cm tumor and positive node are no longer palpable after 6 rounds of chemo (TCHP). Surgery next Wed and the biopsy from surgery will tell us if chemo and immunotherapy killed all of the cancer though. You are in the right place for information and support!!! I love this group and how amazing everyone is. We are all going through this together and talking and sharing our own experiences and information is such a huge help in coping. Ask anything here, no matter how small!
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Thank you! I’m BEYOND THRILLED I was able to get that final chemo! I just pulled off my very last empty neulasta. I’m also happy to get a 3-day weekend to rest up!
I know AI isn’t the best for medical answers, but it did such a great job helping me break down and understand my initial tests and was spot on, so I didn’t stop to think about using it again, or scaring being the answer. Stable disease response just means it stayed the same, halted without growing. I guess the whole point of my testing may have been to check savi scout placement and function. I just assumed it was a check to compare things.
Getting the savi scout was nothing at all like the biopsies! It was relatively painless compared to them. (I had five biopsy sites, and they took 12 tissue samples total. Two or three were the punch biopsies, and those suckers HURT badly!) No bruising or anything with the savi scout.
Neither doc could feel any lumps or bumps in my recent exams either. That was amazing and hopeful to hear 🩷
I didn’t find out any more info on the compression sleeve during radiation. But I agree that it doesn’t sound like a bad idea to try either way!
How are you feeling lately, since recovering from your past chemo? Do you feel more energy coming back?
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Hi @beekaycro24! {{{hugs}}} Welcome to the group! I’m sorry for your diagnosis.
It’s normal to feel numb at first— I did. There’s so much to take in. I’m also ER/PR negative and HER2 positive, and I’ve read over and over how it’s true that HER2+ cancers often respond well to chemo, which is a good sign.
Your oncologist will give you more details at your appointment. Mine laid out my whole plan. So try not to let Google scare you too much! (I make that mistake a lot!) I’m trying to focus on gathering info from the doctors, but the waiting is always hard.
My husband took it harder than me from the beginning. I keep needing to remind him that freaking out does not help! 🙉
Know that you’re not alone. We’re here to support you 🩷
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Welcome, @beekaycro24. We're so sorry you find yourself here, but we're glad you've joined our community - this is such a wonderful place to come for support, guidance, and advice. The first days and weeks after a diagnosis are so scary and overwhelming, but you are most definitely not alone! We're all here with you and for you.
Also, we want to let you know we offer very supportive, moderated Virtual Community Meetups. There are a number of different groups and times, so if you're interested, please check them out here: Virtual Community Meetups.
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