Starting Chemo April 2024 Support Thread
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@bailey.boo thank you so much 🩷🩷
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@chickenlovva Ugh. I’m so sorry to hear about your diagnosis and upcoming procedure. I can’t imagine how scary this must feel. I’ll be thinking of you and praying lots for minimal pain and anxiety. I hope the treatment goes smoothly and effectively! {{{{Big hugs}}}}
I’m with you all— I love being able to share info, ask questions, and get real answers. And if I just want to talk, I know you all understand. It’s nice to feel not so alone.
I’m waiting for the director of my local breast cancer foundation to call me with a time and place to meet up today. Planning to raid her wig stash and see if I can find something workable. She’s working hard to stand up a chapter in our local area, and what she’s doing is amazing…. I don’t know how she’s doing it all! I’m hoping to somehow volunteer when I’m finished with treatment. I’m sure there are easier ways, but I’ve been wanting to meet some local ladies and make some friends since I moved here a couple of yrs back, but I’m always too busy with work.1 -
that’s an awesome idea @bailey.boo! I would love to give back as well after all this is said and done. There’s been so many people that have been kind to me on this journey.
I hope you find a wig you like. I’ve seen some nice looking ones on Amazon for decent prices if you search full frontal lace wig. There’s even videos on YouTube of ladies unboxing and styling them.
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Happy Monday everyone! Hope everyone had a good weekend and feeling ok today!
Curious what plan your ONC has in place for evaluating tumor response during treatment. I just finished #3 of 6 TCHP and hoped that there would be some kind of check on the tumor at this point. I've always heard early response to treatment is what is hoped for. I know mine is still there but hard for me to judge the size. Does anyone know if you can still have a tumor and it be cancer free? I'm HER2+ and that could make a difference in protocol I suppose. I'm letting myself fret over the chemo not working I suppose.
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I hope you both get to keep the rest of your hair! I had 20” Bellami hand-tied silk weft extensions for almost 2 years before this ordeal. I loved “cheating” to finally get the long hair I always wanted. When I had them removed, my stylist told me all she needs is for me to grow 3” back to do them again. They’re a pain in the summer, with water activities, because it’s hard to hide the little beads at the scalp when you put it up or in a ponytail, but I still loved them.
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Oh, good question! I’m going to try to remember to ask my med onc this on Thurs.
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So I met with my radiologist for the first time and learned more details of my plan. Unless my pathology from surgery comes back as positive, I will start radiation 3 or 4 wks after surgery. It’ll be Mondays thru Fridays, for 6 weeks straight, so 30 times total. My sensitive skin is going to be a hot scabby mess. It can and Likely will (according to the radiologist) affect the size you can end up with. I’ve always been DD in one, and DDD in the affected right one. When I asked about the possibility of getting both DD (I’m getting a double mastectomy, but radiation will be right side only), she looked doubtful and said I should talk to my surgeon and be ready to adjust expectations. (My husband was hoping I’d go larger, so he’ll be crushed. Better take him to my first surgeon appt so he can hear it himself.) And I’m likely allergic to most of the things they usually use to combat the burns and scarring. 😬 On the day of chemo round 3, they want me to swing by for a couple of samples I can test, including silvadene.
Has anyone met with their radiologist and heard similar? I guess I need to start seeking out threads on the next parts of the plan, so I can go in with the right questions.
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@bailey.boo I'm having radiation on one side as well and will follow you to any useful threads! I've only met with the radiation oncologist once, and it was before we knew that I would be doing chemo too so you have more info than I do right now. Mine is expected to be three weeks and doing left side only since the tumor on that side invaded the skin. I've already had my surgery - double mastectomy to flat.
I spoke with my physical therapist today about what to expect with radiation. She said it's important to drink a huge amount of water and keep stretching/moving during the course of treatment. Expect tightening will come and go over time (and by time, she said it can come and go over years!) but ongoing stretching should take care of it and if it ever slows you down too much, a few sessions of physical therapy can help manage.
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@bailey.boo and @lbn2222 I've not spoken with a radiologist yet. The surgeon discussed it and stated no matter what I do breast wise, because of the nodes I will receive radiation. If you don't mind me asking, can you tell me how the decision was made for mastectomy? My surgeon said with the disappearance of the tumor I could opt for lumpectomy. I'm now thinking maybe I should get a second surgical opinion. With being HER2+ I have concerns about spread and reoccurrence.
And please include me to whatever thread you guys go to. Thank you !!!
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Oh! Thank you for those tips and tricks! I will definitely do those things!
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For me, my oncologist explained that a lumpectomy might not clear the margins due to the location of abnormalities in my breast. She detailed her plan, but feeling overwhelmed, I told her my preference is a double mastectomy. She totally agreed, emphasizing its efficacy. Then my MRI results showed a huge area of abnormalities— her words were “completely peppered”— and lumpectomy is off the table. When I left that first day, I sat in the car and thought, did I really just say that? Do I really want to go through a double mastectomy!? And I kept asking myself. But that never changed to a “no,” so I’m good with it.
The last appt she went into the same spiel to save the nipples, explaining she could do it, and the long list of possible issues and what she’d do to try to counteract them, but I told her I’d already made peace with the idea of nipple tattoos. She agreed that would probably be best. (For some reason, I really love the shapes, as in heart or flower nipples, instead of boring circles. But I’m still thinking on that.)
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I got a savi scout inserted into my axillary lymph node today. Way, WAY less invasive than the biopsies!
I wore a bandana. I really hate the looks you get, wearing something like that. An elderly lady in the waiting room asked me if I had cancer or was just practicing! LMAO! What does that even mean? 😂🤣 I love elderly people! 😆
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@grammie2 there were a bunch of factors that went into my decision to do the double mastectomy and go flat. Through the diagnostic process, we found that I had cancer in both breasts as well as a gene mutuation called BARD1 that increases chances of cancer. BARD1 doesn't increase your chances of cancer as much as BRCA, but I still managed to get a double whammy! Ultimately I wanted as few surgeries as possible, to limit the risk of complications from reconstruction, and to get the chance of recurrence or new cancer as low as possible. I also preferred the idea of being symetrical on both sides. I am very glad I took the approach I did and miss my hair a lot more than I miss my breasts!
While my surgeon said she could do lumpectomies on both sides, my interpretation was that she agreed that mastectomy was the best approach when I said that was what I wanted.
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Thanks @bailey.boo and @lbn2222 for further explanations. I just found out that they will schedule another PET scan when I go for my 4th treatment to see the progress and another ECHO in July. I'm already nervous that the PET will show up something else and/or the tumor not responding. Got to get a grip and pray about this and stop worrying.
I don't seem to be as educated on my scans and biopsies as you guys. I was so overwhelmed at diagnosis that I just barely absorbed what they explained to me. I need to review those reports and write down questions for the surgeon and oncologists.
You ladies are so together! I am just focusing on chemo and that's about it.
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@grammie2 For me doing research has been a defense mechanism! I intellectualize this experience and try to learn everything I can which seems to let me keep some of the emotions and fear at bay. Also, I am a total control freak in a situation where there are so many things out of my control… If I can help you with any research or sharing my lists of questions, let me know. It sounds like our specifics are very different - I haven't had any scans other than MRI and had surgery before chemo. But I am happy to help!
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TCHP chemo round 2 is in the books! Already getting that thrush feeling, and I feel it in my joints! Got atropine up front, and have neulesta on board waiting to inject. They also gave me a big bag of fluid. I got back in a week for labs, more atropine, and more fluids.
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@bailey.boo yay! Love the look with the cap you look so cute and summery
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Thank you @lbn2222. I think I've just focused on chemo and not looked too far in the future. But I'm half way through chemo, so I really should. I'm glad you are able to "take control" in your own way and that it helps you. Once I start digging in I may reach back out to you for sure!
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@bailey.boo you are so cute!!! Congrats on getting this one done!!
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That’s one burning question I need to ask! When is another MRI and/or PET scan being done to assess the shrinkage? I know Echos will be done once every 3 months. I only know about radiation because my primary oncologist set up an initial appointment with her recommended radiation oncologist for me, and she did such an amazing job recommending my medical oncologist (who recommended a fabulous nutrition oncologist) that I researched and was ready with a list of questions. I love my whole team, and I find they answer almost all of the questions before I even got to ask them! So I’m only together because my main oncologist is together for me 🙃
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The hat with hair was on clearance at Temu for 3 bucks 😁 Lots of misses on Temu, but I’m going back for more hair hats— they have different lengths and colors! A lady in the May/June board shared an Amazon link, so they have them there too. It’s a bit much hair and too gold to wear down, but I’ve done mine with a ponytail, braid, and two braids, one on each side. But only under the back hole, not through, because then the sides look too bald. Gives me a reason to pull back out my scrunchies!
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happy Friday everyone 🩷
How are you ladies keeping your spirits up? I’ve been feeling depressed and angry lately and trying to snap out of it. I feel that no one really understands except you girls .
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Happy Friday @halyy2024 ! So sorry you are feeling that way. I always seem to feel down about the 2nd or 3rd day after treatment and lasts for about 3 days. It really stinks! Any idea what triggered it? I think sometimes we just get tired and I know I try to stay upbeat around my husband a lot, even when I don't feel like it. If you are a music person, find one of your fast and upbeat fav's and play it really loud! I enjoy Christian music and I've played the heck out of Nobody by Casting Crowns haha. I hope you feel better soon and enjoy your weekend!! We are here to listen so feel free to lay it on us! I will probably have to do that before it's over!
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I’m with you! And I know you all get it. Some days, I get no help and only tasks piled on me. No one wants to pick up the slack; instead, they become more demanding. Honestly, I was ready for a break and this round of chemo because I have a good excuse to say NO and just rest. But people are still being needy, blaming my moods on steroids, and trying to provoke me.
So, I have unrealistic expectations— I really just need to step up and take care of me. The rest is noise. I stay mindful, take naps when I’m tired, drag myself outside to my backyard when I need peace, and escape to long bubble baths with Epsom salt when I feel up to it. Afterward, I break out the fancy essential oils and lotions, including on my scalp, treat my cuticles, and apply a fresh coat of Nail Envy OPI polish. Lately, my go to is 70s/80s yacht rock. It brings summer vibes 🌅 I do full makeup on good days. I also have developed a Raquel Welch and Belle Tress wig-buying addiction since Memorial Day. I have 4 more coming, sadly all back-ordered. The one I have so far needs a hairdresser for thinning and trimming. I’m trying to transition back into books but find my attention span isn’t great there, and TV annoys me. It’s getting super hot and humid here, so maybe getting in my pool is in order when I feel better in the next week or so.I hope you feel better soon! 🌞💕
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I am with you all too! Asking for help is not my strong suit but it is kind of crazy how much I'm doing for everyone else while going through all the ups and downs of diagnosis and treatment over the past six months. I think part of the problem is that I keep doing it and don't let people see the toll it takes to keep it up. I'm tired (and kind of angry too, now that you mention it @halyy2024)!!
Going to take some inspiration from you @bailey.boo - maybe I need to start wearing makeup again and doing some things to treat myself. Planning to go shopping this weekend to find something to wear to my company's board meeting next week. Since I work remotely, I'm hoping to spend a couple of weeks in Sonoma - my happy place - after I finish chemo #4 and before I start radiation.
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I'm so sorry you are feeling down. I have been super lucky that I have an amazing family and circle of girlfriends that have surrounded me in love, care and concern in all of this. I have my moments that are usually day 4 &5 of a round where I've told my husband that I'm sick and tired of being sick and tired. I try to remind myself that my attitude will dictate a lot of how I feel. I have scheduled happy hours the last several weeks at least once a week with friends. I'm not drinking but it is nice to enjoy catching up and have laughter. I try to get out in the sunshine, go for walks even if just around the block and put my bare feet in the grass. I am not one to ever ask for help nor except the help. But, a couple months ago I heard on a podcast, that people want to help…..need to help. They feel helpless if they aren't able to help. After that, I started letting people help in any way they are offering. I am also lucky in that my family/friends are begging to help out and even fight for spots being my chemo buddy. I have 16 rounds of chemo to do and I've completed 4. I'm a quarter of the way through. Yippee!!! My first 4 rounds were Adriamcycin & Cyclophosphamide given every 14 days and my last 12 rounds will be Paclitaxol given weekly. My final round is on my birthday, August 30th. I get to ring the bell on my birthday!!!!! I remind myself every day that I'm a badass and cancer will not win. I also remind myself to be gentle on myself, that I am fighting for my life and that I don't need to be the perfectionist that I usually am. I also have decided that my give-a-shit meter has gone wayyyy down. I have been rocking my bald head, even though I had the hair halo made. I have decided to own the fight that I am fighting. I am not sure if any of this will help you but I hope at least a small part will. We are all in this fight together. You got this girl! PS. sorry for the language but sometimes those words best describe all of this.
Grade 3, Stage 3b IDC: ER+, PR+, HER2-, Double mastectomy in February. Positive in 2 of the 6 lymph nodes removed during surgery. PET scan March and 3 more lymph nodes along my clavicle and chest bone positive
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thank you so much ladies ❤️ the advice in here is honestly so good. To summarize, stop giving a shit what other people think, prioritize myself and rest, get outside, listen to good music, see friends, dress up…I love it. I’m feeling better now that all of my kids are over their virus and no one is spiking fevers anymore because that was stressful. My chemo sessions got pushed back 2 weeks so I was just really frustrated because I want this all to be done already! I’m grateful for all the help from my family..they’ve been helping me soooo much with my kids especially the newborn. I hope those of you who don’t have strong support find some reprieve soon 🩷 happy Saturday girls!
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Aww, it's so good to hear things are on the up for you, @halyy2024! We're glad you found this supportive community as well. 🤗
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@bailey.boo I'm going to check out that nail varnish. I've just been soaking them in almond oil but a bit of glam is needed! I have two wigs already, and two on the way. One bright pink and the other, a brown to pink balayage. I'll send pics when they arrive.
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Hi! I’m behind on catching up! Chemo round 2 went so much better at first with atropine and fluids up front! Some stomach pains started yesterday, but I realized that’s because I haven’t “gone” at all since the 6th. That has remedied itself. Nursing runny nose and cough, but chemo is a week in, so I should be feeling better soon! I get more atropine and fluids today, and I’m going to ask them if I really need the atropine this second time.
A cautionary tale. I see a wound care specialist on Friday. On Chemo Eve, my cheap fabric steamer arrived from Amazon. I got it for wigs. Well, the steamer isn’t great quality— it literally gets boiling hot and apparently dumps with the slightest tilt. Sitting at my vanity, I accidentally scalded myself pretty good, then panicked and dropped it completely over, straight on my thighs. I went to urgent care Monday afternoon, and I’ve been on antibiotics as a precaution. The burns are open and gnarly, and you know you don’t heal great on chemo.
I found studies on antibiotic use during HER2+ chemo treatment and recurrence that puts the fear of god into me, so I’m being vigilant about taking pills exactly as directed and taking good probiotics with it. I’m also focusing on fluids and protein. Through my onc nutritionist, I discovered a brand of milk named Fairlife that is ultra pasteurized does not bug my stomach. Now I need bubble wrap!
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