ER-, PR-, Her2+ Roll call
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Ask your doctor about what we call Magic Mouthwash. The pharmacist mixed mine as 50% Maalox and 50% lidocaine. It numbs your mouth and throat. You swish it around for about a minute, gargle and swallow. Sounds so gross, but the numbing should help your sore throat. Luckily, I haven't had the soreness but use it anyway because it's what they prescribed and I believe the Maalox aspect helps my bloating. I read online that it can take anywhere from a few days to months to heal the mucositis. While my thrush is completely gone, I have weird looking bumps on the back of my tongue still (they look like tiny pink lily pads), plus my stools are still so slimy and loose. I've also introduced probiotic shakes into my diet. Right now I'm only drinking one a day, but will do two a day after my next chemo session. I cannot stand my tummy being so upset and need good bacteria to hurry up and develop…lol.
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The wig is beautiful. I found I just used "Buffs" - cotton or wool depending on the time of year. My wig was too much trouble.
Claritin is an over the counter antihistamine. Hope you can find it where you are. For bone pain - don't get the decongestant formula ("D") Also I've never heard that other antihistamines DO NOT work the same. Must be something in the Claritin formula.
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@catarina_fm that looks awesome! And I'm the same way about people feeling pity. I wear them to work and 90% of the time when we go out.
@bailey.boo good to see you back on!!
@beekaycro24 love the pic!!!
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Hi again 😊
Right now I am starting to feel better 🙏 thanks god!
I brought a gel from the pharmacy to moisturize my nose, I preferred this to the spray and I didn't have any more bleeding. Thanks @bailey.boo for remembering me that something could be done regarding nose hydration 🙏
I also brought some mouthwash from the pharmacy, which isn't exactly what you said, but it does alleviate some of the pain.
I was also researching Claritin and why it helps with bone pain, I think I already understood:
Your neulasta is perfilgrastim and my zarzio is filgrastim. Not exactly the same compound (although very similar), but I am pretty sure that it will work for me. I need medical prescription for that and so I will ask for it next time I go to the hospital. Thank you so much for your tips, all of you! 💐
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Hey all and Happy Friday!!! I did get the Phesgo shot yesterday and so far all is well. No D or anything so far!! Super excited about that. I remember someone mentioning they got benedryl before Phesgo but they didn't offer it to me. No reaction, so kind of glad I didn't have to have benedryl. It makes me so sleepy!!!
@catarina_fm glad you were able to get something for your nose! And our Claritin is not prescription here. I hope they will prescribe it for you and it helps the bone pain! I read what you shared about it and Neulasta causing inflammation. That makes me curious because I am still fighting leg edema. They told me it was a combination of chemo and steroids. MO didn't seemed concerned that I still had fluid (not as bad as it was) this far out of chemo. She just said to wear mild compression socks for a while. It's annoying, but hopefully it will soon clear up!
Hope everyone has a great weekend!!
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So, it’s post-DMX day 3, and ewww, I feel so grungy! These drains, and with over 100cc’s a day fluid on each side, it’s gonna be a while before they come out. The goal is to get down to less than 20cc. Until then, no showers—so yeah, feeling like a chubby robed yoda. I definitely recommend getting cute pjs before surgery. The silky robes with pockets seemed like a good idea and are super comfy, but they aren’t the most flattering.
I can’t complain about pain! My On-Q anesthetic ball is almost empty, but I’ve barely touched the pain pills. Tylenol is doing the trick, with most of the discomfort coming from my node area. I’m mostly just restless. And itchy.
My contact dermatitis got so bad I finally gave in and started the prednisone pack they prescribed "just in case." I was really hesitant because steroids can slow down wound healing, but honestly, the itching was driving me crazy! The rash is still hanging around, but it’s starting to improve, except for my armpits. I don’t dare lift them to air them out, though, because I don’t want to mess with the healing process. On the recovery front, I’m practically swimming in Juven packets and Ensure cartons, eating protein, and loading up on vitamin C.
I re-read my post-op report and was happy to learn that my tissue expanders were filled during surgery—120cc initially, then expanded to 300cc. I thought so! No wonder I don’t seem entirely flat! Based on the expander model (133SMX-13-T), it seems I have more room for expansion than the plastic surgeon said I could—up to 800cc, so that’s a nice surprise.
I can’t help but wonder if I have my oncologist to thank for the expanders and fill. She’s been such an amazing advocate for me throughout this whole process, saying yes when the plastic surgeon says no.
So, I’m feeling grateful… but gross! My husband is helping a lot but freaks out if I do anything. I’ll need to sneak in a sponge bath on the down-low!
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@bailey.boo glad you are doing so well!!! Glad hubby is helping and making sure you take care of yourself!!
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Thanks! I’m so happy to hear the phesgo is behaving for you! How are you feeling today? Still good, I hope!
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Thinking of you all as you move through your treatments and surgeries. 🤗
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Bailey - I was allowed to shower w/in two-three days of surgery. I just had to "pin" my drains around my neck. Check w/your doc again. But glad you've completed another hurdle.
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@bailey.boo SO glad to hear your surgery went well and hoping you can keep the "stink" at bay for a long time!
Quick question - I go for round 2 on Thursday. Should I expect the same side effects as I had after the first round or are they different? I just have got my gut back in check with normal stools and am not looking forward to going backwards on that. Of course, the mucositis contributed a lot to my gut problems as well. My taste is way off. I always have a salty taste in my mouth (could also be from the mucositis…idk) and nothing tastes as it should except for watermelon, bananas, cherry tomatoes, and plain white rice (which isn't saying much since it doesn't really have a taste, lol). I'm pretty much forcing myself to eat because nothing tastes good. I'm so bummed on that, btw.
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Hey! Looking back, my side effects were pretty consistent throughout chemo, but they did shift over time. After my first round of TCHP, I had severe diarrhea, which tanked my potassium and magnesium levels, leaving me dizzy and fatigued. That became a common theme, and I had to go in weekly for IV fluids, potassium, magnesium, and Atropine to help manage it all. It got better through better and better management.
One thing that started early and stuck around was my taste buds being off. Everything tasted weird or soapy, and the textures were funky. It made eating harder, but I tried to focus on foods my stomach and taste buds could both tolerate. I was a lot like you— the fresh, crisp stuff was best. Rice was hit or miss, mostly miss for me. Editing to add: Temps matter! Making things iced cold or piping hot made a big difference for me and still are!
By the second through fourth rounds, the skin issues peaked— nosebleeds, raw swollen nose and eyes, skin weirdness. Diarrhea persisted but was still manageable.By the 6th round, I had that allergic reaction to Carboplatin, which was new for me. I also started noticing definite neuropathy in my last round, which hadn’t been an issue earlier. I started hiving up a bit a couple of weeks ago. Hives always freak me out now. If I have hives, for me and my body, I’ve learned it’s best to start being paranoid! (That was my first symptom for both thyroid and breast cancer.)
My last chemo round was 8/29. Things taste a little chemical or salty sometimes, but I do enjoy food much more again! And my beloved coffee tastes mostly normal again and my tummy can tolerate it again! I still have random diarrhea. They were so worried about constipation after surgery. Not an issue!
BTW, hubs installed a bidet to our master bedroom toilet, and I definitely recommend this for after surgery! How did I live without this thing before?! Looks like the next hurricane is coming through our area next week and everyone is posting online all annoyed that peeps have panick bought all the TP in sight again, so it’s even more handy to have 😁0 -
@beekaycro24 I think what happens for you in rounds one and two give you a sense of what you’ll be dealing with. For me, my side effects would come back a little worse each round. I had to really change my diet because my usually iron gut became so sensitive. I’m wondering if others have good advice for the mucositis in your mouth. I had it in my nose.
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@beekaycro24 for me, I had some of the same effects each time and some that only happened once or twice. My first and second treatments I had a sore mouth and had to get magic mouthwash. No issues later. I also had some face skin issues with my first and second. Dry and peeling patches. I only had D one day in between treatments (sometime between day 4-9 post chemo). I usually had chemo brain, dizzy feeling days 3-8 post chemo. I became more tired with each treatment. Leg edema started about #4 and was really bad between 5 & 6, still struggling with it. By #4 I had tender fingers and toes. My fingernails have ridges and a little discolored, but thankfully none became loose. I have a bit of neuropathy in toes/feet. Didn't have nausea until after the 3rd which would take place usually day 5-7 post chemo. Zophran helped that. Weepy eyes started half way through treatments and was aggravating. Stopped about 3 weeks post last chemo. Like bailyboo, my magnesium dropped and I had to get iv mag. Took pill form potassium around #5 chemo. My MO was very proactive about iv fluids in between treatments.
Still doing good after Phesgo! So thankful!!!
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Hi all,
Wishing you strength through your treatment journeys. I wanted to update you all on some good news- I got my bobbies (implants) tattooed today with a henna inspired design! Yes it did hurt even though I am numb due to BMX. Hurt a lot more than 3D nipple tattoos but totally worth it! It looks cool and distracts from my scars! Will take a few weeks to heal up. Who knew that breast cancer would lead me to my first ever tattoo!?
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Aw! So happy you got the tattoos you wanted! I bet they’re gorgeous. There are surely easier ways to earn your first tattoo! 😁 But these are going to always remind you of the brave, strong warrior you are! 🩷 Congrats on owning your next chapter 💕
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@snm Amazing! I’m sure they are beautiful. What a great idea. What kind of design did you choose?
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@bailey.boo am I remembering correctly that you are in FL?
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Good morning! Yes. Lakeland. My son is in Apopka, and my mother-in-law is in The Villages. None of us are in surge areas. We are all as prepared as we can be! It should weaken before it gets here.
@djschmidt1 You doing okay over there in Tampa?
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Oh wow! I forgot @djschmidt1 was in Tampa! You ladies better be safe!! We have a friend in Orange City who is riding it out as well.
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@djschmidt1 and @bailey.boo take care and be safe. Keep us posted with how things go for you.
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Hello ladies. Diagnosed September 2024, stage 2a (I think? I was just told stage 2), with some node involvement (surgery report said n1) and multiple small tumours in left breast. Largest one was 1.5cm. Did PET/CT scans and no evidence of metastasis apart from to nodes.
I have started TCHP already, next round is next week.
Am Her2+++, ER/PR neg.
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We're very close in our cancer journey. I go for my second round tomorrow. I'm also 2a, but with no node involvement. My tumor (on right side) measured at 4.5cm on the ct scan the day before my first treatment. It has definitely changed after only one treatment. Praying all goes smoothly in your treatments!
I have never heard of the henna tattoo idea, @snm….I bet it's beautiful!
Y'all stay safe, @bailey.boo@djschmidt1
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Thank you - and to you. Can feel a massive difference after first round already too :)
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@jessybessy Hi and welcome! I was diagnosed with stage 2A also last year at the end of July. I started the TCHP first and then had a double mastectomy and 5 nodes removed on the left because of one positive node initially. I had a complete pathological response to the chemo - no cancer found in the surgery pathology testing. I’m at the end of all the treatments ant this point Only thing left is follow up visits every now and then and nipple tattoos in December. I also felt a dramatic shrinkage after my first round of TCHP. That is awesome, exciting news that you can feel a difference already! Your body is responding to the treatment! How are you feeling?
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@jessybessy sorry you had to join us but so glad you found us! This group is awesome and has helped me so much and is still helping a ton! That is awesome that you and @beekaycro24 can already tell it's working. I did achieve PCR, but it was the 3rd dose before I felt like I could see a difference. Mine was almost 3cm and 2 lymph nodes. My armpit had pain almost all the way through chemo and it scared me a bit that the chemo wasn't doing what it should. You guys should be good to go if you can see it working already!! Awesome!
Still no side effects from the solo dose of Phesgo! I am so thankful and pray to God it will continue. Has anyone heard/read if Phesgo is cumulative like chemo?
I am finally seeing hair on my arms, hands, legs!!!! It was 2 months post chemo yesterday. I was driving yesterday and caught a glimpse of small hairs standing straight up on my hands! The sun was shining just right. My husband was with me and I was yelling "I see hairs on my hand"!!! They are very light in color but wonder if that will change?? I noticed some fuzz on my face as well this morning. Chemo did a number on my skin and the coloring is finally looking normal. I looked like I had a really good tan on my face and that has faded a lot.
Said my prayers for you FL folks and everyone in the hurricane's path. It looks ugly! Hugs to everyone!!!
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@jessybessy, welcome to Breastcancer.org! We're glad to see you've already received a warm welcome from others. If you need anything or have questions for us, please don't hesitate to reach out. We're always here!
The Mods
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Hi girls! I heard about the hurricane in the news… Are you all safe?
@jessybessy I am sorry you had to join us, but welcome! We are here to share our experiences and help each other! Are you experiencing any side effects?
@beekaycro24 good luck with your 2nd round! I hope it happens to you like it did to me and that the first cycle was the worst.
I was reading your posts and remembering that I only felt a big difference in tumor size after the third round (of AC in my case), but my mass was huge - 8 cm. Currently (4 rounds of AC + 1 of TCHP) I can practically no longer detect it. It's incredible to realize that the treatments work! Furthermore, after my third round, they tried to place a clip on one of the nodes that were biopsied and tested positive, and the doctors were no longer able to find that node during the ultrasound.
@grammie2 I am also taking trastuzumab and pertuzumab in the form of Phesgo, which they gave me together with docetaxel in the last round, and I only felt pain in the leg where I was injected. Was your injection also in the leg? If these are the only side effects, that's great! I think the impact of Phesgo is not cumulative, they are antibodies, and the mechanism of action is completely different from chemotherapy drugs. It has side effects, but they are much milder than the chemotherapy itself.
I can't wait for the day my hair comes back, especially my eyebrows and eyelashes. I haven't completely lost my hair yet; have you really lost everything? I still have three sessions left, anyway. I am glad you're getting back to normal :)
@bailey.boo how is your recovery going? Do you still have drains? Hope you're fine!
Stay safe!!!
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@catarina_fm Hey! Yes, I lost pretty much all hair. Few brows and lashes left. Only a few random hairs on my head were left except patches at the temples. Lost nose hairs too which is really frustrating because I had periods of a drippy nose during chemo. You only have one treatment of TCHP? Maybe AC doesn't cause full body alopecia and with just one round of TCHP you won't experience it! And probably everyone who does TCHP doesn't loose all hair like me.
Yes, Phesgo is injected in my thigh over a 5 minute period, given every 3 weeks. I received it all through chemo (TCHP) as well, every 3 weeks X 6 treatments. Perjeta can cause really bad stomach issues for some people. My MO said that I did so well with that during chemo that I shouldn't have any issues. And so far she is right! Like you the injection site was sore for a day or so but no other signs.
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