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Starting Chemo July and August 2024 Support Thread

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  • catarina_fm
    catarina_fm Member Posts: 47

    Hello everyone! My name is Catarina and at the age of 38 I was diagnosed with breast cancer, stage 3, HER2+, with several positive lymph nodes. The PET came back clean, but it was done over a month ago and I haven't started chemotherapy yet, and I'm very afraid that the situation has gotten worse in the meantime, as the tumor grows from week to week.

    I'm starting chemotherapy next week (3rd July) and the day before they will put the PICC on me. I will do 4 cycles of AC every 3 weeks plus 4 cycles of docetaxel associated with double anti HER2 blockade (also every 3 weeks). I'm quite apprehensive... anyone else here starting in July?

    Wishing you all good luck and lots of strength!

  • jeremary08
    jeremary08 Member Posts: 4

    My name is Mary and I'm 53 years old. I recently underwent a lumpectomy, but my ONCA score was too high to skip chemotherapy. I'm scheduled to begin July 17 and have no idea what to expect. I've been out of the country and just got home, so I'll be asking my dr. lots of questions between now and then. One of my big ones is about using a cold cap. Has anyone tried that or are you planning to try it?

  • moderators
    moderators Posts: 8,523

    Hi @jeremary08, and welcome to Breastcancer.org!

    We're so very sorry for the reasons that bring you here, but we're really glad you've found us, decided to join, and post. You're sure to find our amazing community a wonderful source of advice, information, encouragement, and support — we're all here for you!

    While you wait for others to join you and @catarina_fm here, we wanted to share some links for you that you might find helpful:

    Thread:

    And this page from our site: https://www.breastcancer.org/treatment-side-effects/hair-loss/cold-caps-scalp-cooling

    As well as these podcast episodes:

    https://www.breastcancer.org/podcast/cold-caps-basics

    https://www.breastcancer.org/podcast/coldcaps-patient-perspective

    https://www.breastcancer.org/podcast/scalp-cooling-preserve-hair

    https://www.breastcancer.org/podcast/paxman-scalp-cooling-patient-assistance

    We hope this helps. Let us know if there's anything else we can do to support you!

    —The Mods

  • catarina_fm
    catarina_fm Member Posts: 47

    Hi @jeremary08 and everyone! I'm going to start my first dose of AC today. I'm apprehensive, but on the other hand, I'm anxious to start, because the tumor is already so big that I have pain in my breast and armpit. As for the cold cap, I won't use it. I've always had long, curly hair, down to the middle of my back, but in Portugal it's not customary to use it and there's no guarantee of results. @jeremary08, good luck, I hope it works out well for you if you use it! Anyone else starting chemotherapy this month? Good luck to us!

  • moderators
    moderators Posts: 8,523

    Best of luck with your first dose of AC today, @catarina_fm! We'll be thinking of you! 🤗

    The Mods

  • jeremary08
    jeremary08 Member Posts: 4

    Good luck today Catarina! I hope all goes well for you. Sending hugs from the US.

  • catarina_fm
    catarina_fm Member Posts: 47

    Hi everyone :) firstly, I wanted to wish @jeremary08 good luck for her first session. I hope it all goes well!

    My first session (AC chemo) was 2 weeks ago, the first 3 or 4 days were difficult, I was already feeling discouraged, but the truth is that it passes and at the moment I feel great. I've been walking a few miles every day and my appetite has returned. My side effects were nausea (a lot, worst part for me) and tiredness. My hair started falling out today, tomorrow I'm going to shave it and buy a wig.
    I know that the effects of the treatments are cumulative, but the fact that I noticed that I improved after a few days already cheers me up a little. Anyone else who started treatment this month?
    Greetings to all!

  • jeremary08
    jeremary08 Member Posts: 4

    Thank you Catarina! I’m typing this from my chair while getting my infusion. I’m on TC chemo, once every 3 weeks. I did decide to cold cap and so far it’s tolerable. The first 2-5 minutes of a fresh cap are tough, but my chair is heated and we brought an electric blanket so I’m cozy. We’re getting the cap change routine down too. Despite this, I will be fine if I lose my hair. My goal is to prevent the permanent hair loss that can occur with Taxotere. The next couple of weeks will be interesting for sure. Thanks for the update!

  • catarina_fm
    catarina_fm Member Posts: 47

    @jeremary08 don't despair if you feel bad tomorrow... you'll be better in no time 😉 I hope your hair stays intact! I've been reading about cold caps and there are a lot of cases where the hair stays healthy. I don't have that possibility here; tomorrow I'll say goodbye to my hair. We must think that this is just a bad phase and that we will be fine soon 😊 Lots of positive energy for you! Kisses and be well!

  • catarina_fm
    catarina_fm Member Posts: 47

    Hello! It seems like not many of us are starting treatment in July.

    @jeremary08 how are you feeling? I hope you are feeling better now 😊

    This Wednesday I'm going to receive my second cycle of AC.
    Best wishes and take care! 🌷

  • sophie_99
    sophie_99 Member Posts: 1

    Hi All,

    My name is Sophie. I'm 34 and was diagnosed with stage 2 HER2 pos, ER-low, lymph nodes + about a month ago. I'm doing TCHP once every 3 weeks and am 1 week post my first cycle. Trying the cold cap although I have to say I find it super uncomfortable. Felt my first pins and needles in my hands today which is a bit scary. Generally still really struggling with the nausea and just psychologically coming to terms with everything which is why I thought I would try reach out here. Hope everyone's treatment is going ok so far.

  • catarina_fm
    catarina_fm Member Posts: 47

    Hello @sophie_99 this is not an easy situation, in my case I think the shock was so great at the beginning, that at this point I just want the treatments to end quickly. The side effects are not easy but fortunately they improve and we have some almost normal days... we need to be positive! Lots of strength to everyone, we will get through this! Take care

  • jeremary08
    jeremary08 Member Posts: 4

    My journey post-infusion has been a little rough. I’m now in the hospital, as I got a fever and had to come in. My white blood cell count was .8!!!! Now I’m up to 2.7, so at least we are moving in the right direction. I’ll probably be here until Monday. I think I have to be stable for 48 hours before they will release me.

  • kimcpratt
    kimcpratt Member Posts: 3
    edited July 29

    Hi Everyone~

    My name is Kim and I have copied my case from notes to post so I do not have to retype them.

    "The patient is a 59-year-old postmenopausal female who had routine mammography performed and was found to have an abnormality of the right breast. This was followed by an ultrasound and clip placement followed by a biopsy. The biopsy was consistent with an invasive carcinoma of the breast. She underwent lumpectomy. The tumor is designated as ER positive, PR negative, HER2 negative but has a high Ki-67 of 35%. Oncotype was performed and came back at 30 suggesting that she would benefit from adjuvant chemotherapy and came today to discuss the details of that plan."

    My first chemo was Wednesday the 24th and I am miserable. How long does this last? Any tips for me?

    I look forward to talking to you all. Totally wish it was under better circumstances. Thank you all very much!

  • catarina_fm
    catarina_fm Member Posts: 47

    Hi everyone!

    6 days after infusion and I'm finally starting to feel better, I'm thinking about going for a short walk near my house, but I don't know if my tiredness will allow me to. Today I've already been doing household chores almost normally. Overall, I think I felt worse after my first AC infusion than this second, perhaps because I already knew better what to expect.

    @sophie_99 how are you feeling now? Are you less sick? Do you feel a little better?

    @jeremary08 how are you? I hope you have recovered and are feeling better!

    @kimcpratt hi! What type of chemotherapy are you taking? I can only talk about AC, because I've only tried that one yet... for my part, I also had an infusion on Wednesday and I'm starting to feel better today! You'll recover, don't worry. What bothers you most? The nausea? Anyway, I think you should start feeling better soon 😊

    Kisses! Take care 🌷

  • moderators
    moderators Posts: 8,523
    edited July 29

    Everyone, you may also find it helpful also to attend one of our virtual meetups for "going through treatment". We have on on Tuesdays at 1pm, ET and one on Thursdays at 6pm, ET

    https://us02web.zoom.us/meeting/register/tZEvc-uurzgvHNyvhpw-l0KPkwjlKN_KbOeC#/registration

    https://breastcancer-org.zoom.us/meeting/register/tZUudOmrqDItE91CwFXkf0p75el7SANg3Ehv#/registration

  • kimcpratt
    kimcpratt Member Posts: 3

    @catarina_fm

    Thank you so much for answering my post. I am so overwhelmed at the moment. I am glad you are feeling better - I hope it continues for you!

    I thankfully do not have any nausea so far. Overwhelmingly tired and very sore/achy (worse then my worse flu). I am trying to work while going through the chemo - hopefully I can stay at work. I think it's beneficial (at least to me we are all different) to keep up as much of my normal activities as possible. I have an office at home if I can't come in. How knows? I am exhausted! I don't know the terms yet so not sure about AC. I have infusion chemo with 2 meds & 4 premeds.

    Take care!

  • moderators
    moderators Posts: 8,523

    Sending hugs to all of you !

  • kimcpratt
    kimcpratt Member Posts: 3

    First chemo treatment was 8/24 - 10 days out 8/3 I finally felt like my old self again what a relief! 8/4 hair is now coming out steadily. Boy is this hard stuff! I really had hoped to enjoy this week before my next treatment but, I am incredibly sad. Logically, I know this is just another side effect and it will grow back but emotionally it's another story.

    I hope that you are all doing well and have a great week! ❤️

  • lukasmom
    lukasmom Member Posts: 5

    First CT chemo was 7/30. I’m on 4 cycles every three weeks. Today is day 6 and feeling more normal. Didn’t need a 2-hour nap after lunch and feeling just more like myself. I am achy - oncologist warned me of this side effect possibly from the Neulasta Onpro, so taking some Claritin and hopefully that is helping.

    Infusion day was super long - had some insurance problems so almost didn’t happen but got the approval - better late than having to reschedule. So with the cold capping I was at the hospital for about 11 hours. Thankful to have visitors and snacks that were supportive and helped me navigate the day with grace.

    Is anyone a hot yoga or power vinyasa practioner? Anyone continuing hot yoga during chemo?

    Cold Cap tip: my neighbor lent me this flax seed and lavender pillow that you microwave for 3 minutes and it was really nice and cozy especially for the first cold capping hour or so. Then after a couple hours I didn’t really notice it.

    Bout me: 46 y.o. pre-menopausal woman with h/o right breast cancer (s/p upfront right lumpectomy and SLNB 6/20/24 with 2.4cm grade 3 IDC, ER+ (>95%), PR+ (~30%), HER2 neg (IHC 2+, FISH 2.8/2.5=1.1), Ki67 60-70%, +extensive intraductal component, no LVI, +5.5cm DCIS,negative margins, 0/1 LN, pT2N0(sn), Mammaprint High2 -0.668, Luminal B

    Sending all on this chemo journey care and warm hugs.

  • catarina_fm
    catarina_fm Member Posts: 47

    Hi everyone! How are you felling?

    I must say that in this second cycle of AC, I felt nauseous for more days, but it has passed and now I feel practically normal! I plan to go away for the weekend and do an easy mountain trail 😊 After the first cycle I had mouth sores and constipation. This time it was much easier... none of these symptoms so far. Does the body get used to it? I don't know but I feel relieved.

    @kimcpratt I'm glad you feel better now! 🌼After treatment it seems like the suffering will be infinite but the truth is that the body has an extraordinary capacity for recovery 😉 Do you have any physical symptoms at the moment?

    As for the feeling sad part, we all have different ways of reacting. I despaired when I was diagnosed, I spent days without eating or sleeping, but at this point, I have come to terms with it and now I am focused on recovery. Don't feel bad about being sad, it's perfectly normal. But try to have hope. You will recover! The treatment has bad days but it also has almost normal days and we will be free from this very soon. You'll be fine! A big hug to you!

    @lukasmom hello! 🌷Great that you feel better now! 11 hours in the hospital? So long! My infusion takes 1h30min and it already bothers me. Maybe when I switch to the second phase of treatment the same thing will happen to me.

    Personally, I don't do yoga, but before the diagnosis, I was very active and trained at least 3 times a week, mostly in some cardio and muscle strengthening classes. Since I started chemotherapy, whenever I feel like it, I do shorter workouts (maximum 30 minutes) and I go for walks very often. Exercising, whatever it is, always helps me clear my head and feel more energetic. I think that if you have no contraindications you should continue!

    A big hug to everyone! Take care💛

  • lukasmom
    lukasmom Member Posts: 5

    Hi Everyone - hope you are all feeling okay.

    Finished my 2nd infusion yesterday - 50% done! Took some senna before so had less constipation today - whew! Had a fairly long day yesterday 9 hours with the cold capping to try to keep some hair although I am shedding ALOT.

    My friend and I ending up getting makeovers with new makeup yesterday thanks to Lipstick Angles at the hospital which made the day go by with some fun. Learned how to pencil in eyebrows. I hope you all get to experience their magic.

    But getting some makeup on, and feeeling good made me wonder - what are you all doing with your hair when you go out? Have a couple dinners and evening social coming up in September and wondering what to do with the thinning hair on top. Evening hat? Fascinator? I usually would wear my cashmere beanie but thes are more like dress and heels events.

    If you have any thoughts let me know!

    Thinking of you all - we can do this! Some of it is hard, ugly and also I’m grateful to feel the resources here. Cancer isn’t a club I looked forward to joining, but there is a lot of strength here. Thanks for being here with me.

    Lukasmom

    46 y.o. pre-menopausal woman with h/o right breast cancer (s/p upfront right lumpectomy and SLNB 6/20/24 with 2.4cm grade 3 IDC, ER+ (>95%), PR+ (~30%), HER2 neg (IHC 2+, FISH 2.8/2.5=1.1), Ki67 60-70%, +extensive intraductal component, no LVI, +5.5cm DCIS,negative margins, 0/1 LN, pT2N0(sn), Mammaprint High2 -0.668, Luminal B

  • jsizzle
    jsizzle Member Posts: 5

    Hi everyone, hope I’m not too late to the party. I’m 35 years old and diagnosed at the end of July with IDC, grade 3, ER+ (90%) PR+ (10%), HER2 equivocal IHC, low positive FISH, high ki67 (60%). Positive for BRCA2 and CHEK2 mutations. I begin 6 cycles of TCHP tomorrow, and am scared senseless. I plan on manual cold capping, because my cancer treatment center doesn’t offer it. I’ve fully come to terms that I’m going to lose my hair, but I’d really just like to try to prevent any permanent loss. If my chemo goes as planned, I should be having dmx surgery in January, one of which is preventative (only have one tumor in my left breast) due to the gene mutations. Something to look forward to through the holidays! (Not).

    I hope everyone is doing well! Being at the tail end of August, I imagine if this thread continues, I’ll always be some steps behind you guys.

  • moderators
    moderators Posts: 8,523

    @jsizzle - Welcome to the group! You’re definitely not too late. This community is a great place to share experiences and find support. Wishing you the best as you start treatment tomorrow.

    The Mods

  • jsizzle
    jsizzle Member Posts: 5

    Thank you, mods! It went as well as it could’ve gone, I think. The worst part for me was the icing of the hands and feet, I didn’t expect to hate that as much as I did. I’ve always been a cold weather lover more than a sunny hot one. But I was at the treatment center for 7 hours, it was a long day. Of course the next ones will be shorter, but the nurses truly made it as painless an experience as possible. Going okay today, no nausea or anything, just achy and super tired but can’t sleep because of the steroids. My face and chest turned red this morning and my oncology nurse said it was likely also due to the steroids.

    Anyway, my dad is so sweet and just ordered me my first wig from wigoutlet.com. He sent me the receipt and I was so touched that he did a small donation to breastcancer.org without even knowing I’m a member here! I hope I love it, but if not, they have a great return policy.

    Here’s to getting through day 2! I’ll check back in as the days progress so see what else may come up. How’s everyone else doing, likely on your 3rd or so treatments by now?

  • moderators
    moderators Posts: 8,523

    Hi @jsizzle!

    It’s great to hear you’re feeling okay, even with the achiness and the steroids kicking in. How are you today?

    We wanted to send a huge thank you to your dad for his thoughtful donation to Breastcancer.org! That’s so sweet of him, and we’re incredibly grateful for his support. THANK YOU! 💝

    Please, keep us updated on how you're doing. We're all here cheering you on!

    The Mods

  • jsizzle
    jsizzle Member Posts: 5

    Thanks for checking in, mods! 💗 Today was day 10 and I’m just finally getting back to feeling better. It took a few days to get me down, but once it did, it was pretty rough for a while there. The severe bone pain has been the worst part for me, the big D for 3 days straight was a close second worst. My WBC count was 1.9 at my one week followup, so no Neulasta for me, my oncologist said they’d only give it to me if it dropped below 1.0. I had to go back to my surgeon today because my port incision came back open and bled a bit, 2 weeks post placement. They put a steristrip on it and said it’s the combination of me being thin and not having a lot of extra chest tissue to spare to pad my port, and the delayed healing due to beginning chemo. I’m getting a sore on the tip of my tongue that drives me nuts when I talk. Lots of baking soda and salt rinses, but hasn’t helped much yet. Taste is kind of coming back, but I’m still being careful about what I eat. I think my next round of chemo I’m going to start off on a bland diet right away instead of thinking I can eat whatever I want just because I’m not nauseous from all the anti nausea meds. I paid dearly for that in the following days with the D and the acid reflux. 😱

    Hoping tomorrow will be better yet!

  • lukasmom
    lukasmom Member Posts: 5

    Hello hello!

    @jsizzle I’m sorry to hear the bone pain was rough and you had some port issues. My neck really hurt from the Neulasta after the injection but then got better. The doctors told me to take Claritin twice a day which may have helped?

    Cold capping kind of worked, but also I had huge chunks for hair falling out so I decided to just go ahead and shave it. I’m kind of loving it, feeling punk and just hoping the weather stays nice in San Francisco. I was going to look for a wig, but my insurance won’t cover it! They have been good about covering a lot of things - acupuncture, oncoplastic closure, digni cap, so figured they might do wigs but no….so this season will be brought to you by scarves and hats.

    I couldn’t taste anything for a week, but what I could taste more of were lemon juice and acidic foods like sauerkraut and kimchi. Also spices like cumin seeds and mustard seeds. So I’ve been cooking a lot of Indian Food here without too much chili - my friend suggested a cookbook I’ve been loving. Indian-ish by Priya Krishna.

    Chemo #3 is Weds 9/11. Stopping the capping so hopefully I’ll be done quicker.

    Wishing you all the best and ease in your days.

  • jsizzle
    jsizzle Member Posts: 5

    Hi @lukasmom! I’m so glad to hear from someone going through this at the same time!

    It’s ridiculous, but my insurance company will only cover 3 Neulasta vaccines for the entirety of my treatment, which means my oncologist is only going to give them to me when my WBC count tanks low enough. This frightens me since I work in public education, and although I’ve been masking and washing my hands like a crazy person, I still worry about catching the back to school viruses going around. Stupid Kaiser. :(


    So I’m not sure why I’ve still had such a hard time with the pain, which I’m calling bone pain although it could be muscular I suppose? It just hurts so much deeper and more than any other pain I’ve had before. It’s in my spine, shoulders and ribcage, mostly. I was on the depo provera shot for years for birth control, which can cause bone loss, but my bone scan was clear, so..? I’m not sure what’s going on.

    Good for you taking the plunge and shaving! I told myself I’d shave half my head this weekend, either just one side, or maybe even a Mohawk- partly for fun and partly because my scalp has been tingling and I know it’s only a matter of time. My wig came and it’s okay.. not as realistic as I’d hoped, although the lace makes the scalp part look real, it’s just a little bit “80s” to me with the layering. But it will do the trick when I need it to, I guess. 🤷🏼‍♀️ Honestly, I’ll probably end up using my hats and scarves more often anyway too. But me having a wig meant a lot to my 7 year old daughter, so I figured I should give it a try.

    My 2nd round will be on the 18th, so a week after your 3rd. Did you feel like the 2nd round was easier or worse than the 1st? I’m already having a hard time convincing myself I’m going to go back and do this again. It’s been so bad already, and I’ve only just begun. 😞


    Oh and I love Indian food too! I’m scared to trust my stomach with it right now, maybe next week I can start re-introducing things to my diet. But you’re right, I noticed lemonade still tastes good. The sore on my tongue has made it hard for me to enjoy food anyway, definitely going to ask my onco about alternate mouthwashes because the baking soda&salt isn’t working, neither is the Biotene. Lost 5 pounds this week and I’m already small, didn’t really have it to lose. Afraid I’m going to end up a walking skeleton. No Halloween costume required this year ☠️ Ugh.

    Thanks again for the reply, and take care!

  • lukasmom
    lukasmom Member Posts: 5

    @jsizzle

    I’m sorry kaiser is being stupid… that stinks about not getting Neulasta every time. I understand why you are nervous about viruses. I’m hoping your WBC counts stay solid.

    I ended up getting a Green Beehive for a monochrome party and it was really fun - I actually won a prize!

    Let’s see, 2nd round was a little worse than first round, but I’m hoping this third round will be a little better somehow? I told myself I would take more zofran for nausea and senna for the constipation it causes - not wait for the symptoms. Just do it ahead of time. Also my friend just dropped off some Enterade drinks. It’s supposed to be helpful for the gut and I’ve had two so far and I do feel pretty good. I think he got it from Amazon. enterade AO Mixed Berry, 12 Pack, Specially Formulated to Decrease GI Side Effects, Supportive Care Beverage, 8 oz Bottles (12 Pack)

    https://a.co/d/gaOHwh9

    I’m also not a vegetarian although I eat mostly of plants, I have been making bone broth and I think this is helping me feel like I am getting nutrients and nourishing my stomach lining. If you need recipes let me know it’s fairly easy and I just stick it in my insta pot. My kids love it too.

    One new side effec that I am experiencing is hyper pigmentation near my IV - skin is getting darker and my left hand is having some nail bed darkening. The chemo nurses said this was due to the taxotere….

    @jsizzle I’m excited for your undercut or Mohawk and the option to wig when you need to! I do feel the pressure to look as nice as possible right now so my family doesn’t get too worried. I’ve been wearing more make up and I have to say when I put in the effort I do feel better- it just takes longer for me to get out the door. I also don’t want my whole life to be about talking about cancer ALL THE TIME. Some of the hard stuff is dealing with friends, colleagues basically other people’s anxiety around cancer.

    I’m thinking about all you folx going thru chemo right now.

    I’m 75% done now, and feel the finish line approaching.

    Wishing you all rest and care.