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Starting Chemo April 2024 Support Thread

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Comments

  • lbn2222
    lbn2222 Member Posts: 42

    Hope it goes well on Thursday, @grammie2 ! I'll send positive thoughts. And I hope you start to feel more comfortable with the wig (and/or your head without the wig if you choose). My second treatment is on Friday and I'm squeezing in a business trip to NYC beforehand.

  • grammie2
    grammie2 Member Posts: 215

    Thanks @lbn2222 ! Have a safe trip!!

  • bailey.boo
    bailey.boo Member Posts: 230

    @grammie2 Good luck on Thursday— you’ll be in my thoughts and prayers! I’m glad your head feels better. You have a wig already? I need to buy a beanie yet. I would like a wig when the time comes.

    I hope everyone else is having a wonderful day! ☀️

    I got through my MRI this morning, and the Valium did not knock me down for the day. So far, running my results through AI, it’s still not good news, even more dire looking than the biopsy. I’m promising myself to be calm and wait for the human professionals to interpret. I still have a PET scan to do next week.

    My port site is a red, hot, angry, blistery mess but I think it’s improving? I look diseased. I hope l it doesn’t delay my first chemo tomorrow. I am ready to do this thing even more now.

    I got my 20” hair extensions taken out and hair chopped short into a chunky layered longer pixie type thing. My hair feels so short 😳 But it will be better this way.

  • grammie2
    grammie2 Member Posts: 215

    @bailey.boo your haircut is soooo cute!! And I'm sorry you are having such a time with the port site.

    And on the MRI, yes, let the "humans" tell you! I read my PET scan and was horrified (because I don't understand medical terms) and what I thought meant bad, actually meant normal LOL.

    Keep us posted about your chemo appt tomorrow! Praying it will take place as scheduled! What chemo are you getting?

  • bailey.boo
    bailey.boo Member Posts: 230

    It’s the every-3-week TCHP protocol (Taxol, Carboplatin, Herceptin, and Perjeta), with the H&P given as a shot.

  • bailey.boo
    bailey.boo Member Posts: 230

    Now I’m panicking, but there’s nothing much to do.

    So I get this voice message:

    “I was calling to review your MRI your entire breast spanning about 10 x 8 cm is taken up by the cancer there's also a lot of inflammation from the allergic reaction that you seem to be having…. but the key is getting you into seeing medical oncology so we can start you on chemo thank you bye…”

    Only to get another message in my chart app from the same oncologist saying they’re starting me on prednisone to clear up the rash and don’t come in tomorrow. Let’s see if we can start next week.

    I know it’s for my safety, but I am terrified that it’s growing so fast but now I have to wait.

  • grammie2
    grammie2 Member Posts: 215

    That stinks they can't start the chemo @bailey.boo. What did the ultrasound measure the tumor at?

  • kggenx
    kggenx Member Posts: 24

    I have been miserable all day. I think it’s from Neulasta I got on Friday. My bones and joints literally ache all over eight out of 10 pain. I can barely move. I haven’t eaten anything all day because I have no appetite due to the pain. I’ve been taking the Claritin. I’ve been taking Motrin. I’ve been taking Excedrin migraine all the things and nothing is helping so this doesn’t subside by the morning. I’m calling with cancer center and see if they’ll call me in a prescription for an narcotic cause I can’t take this anymore, I was literally in such pain last night. I was in tears.


    . I had to miss work tonight because there’s absolutely no way I could go, they weren’t happy about it, but it is what it is.

  • bailey.boo
    bailey.boo Member Posts: 230

    Thanks. The MRI didn’t provide a specific measurement of the tumor size; it identified an “extensive non-mass enhancement” spanning from 8-11 o’clock, with a size estimation of approximately 10.2 x 4.0 x 8.9 cm, plus an “enhancement” measuring 0.7 cm.

    There’s also nonspecific edema of the upper inner right breast, but that’s likely the allergic reaction on the port.

  • grammie2
    grammie2 Member Posts: 215

    @kggenx I'm so sorry you are having a rough time. Hope they can get you something to ease the pain.

  • bailey.boo
    bailey.boo Member Posts: 230

    @kggenx I’m so sorry you’re feeling so bad. It sounds awful. 💙 I hope you can get some relief soon.

  • halyy2024
    halyy2024 Member Posts: 36

    hello everyone! This is my first ever comment although I’ve been lurking on this site for a while. I had my first of 4 TC infusions on April 17. I go in for my second dose on Wednesday. I’m also cold capping through penguin cold caps. My hair has been shedding for 6 days now and isn’t slowing down. It’s depressing and also my scalp hurts and is itchy. Anyone else here cold capping?

  • halyy2024
    halyy2024 Member Posts: 36

    @sarahjunefox I also have a 5 year old! I actually have 4 kids…7,5,2, and a newborn. I was diagnosed while pregnant with my last. Being able to care for them through this has also been my greatest fear. I’ve only had one cycle so far, but it went well and I was able to do all my normal things. There were only 4 days where I had fever, chills, extreme fatigue. Those days I couldn’t do much and my mom had to help me care for the kids..but it was similar to if I had a flu. I could have pushed through if I didn’t have help but it woulda been a tough few days. I’m hoping it doesn’t get any worse from here. I’ve read it gets harder each cycle.

  • chickenlovva
    chickenlovva Member Posts: 58

    @grammie2 I hope Thursday goes well too! I have wigs too for when the shedding starts. I feel they are too poofy or tall? Hard to explain but I won't be ready to rock the bald either. I bought some baseball caps too. My kids are older but they still want to draw and glue things to my head.. maybe I'll let them 😆 @kggenx I'm so sorry you are in so much pain! I didn't have joint pain really but boy I had headaches. I hope you get relief real soon! @bailey.boo your hair is amazing! I'll be too scared to cut mine. It's very long and curly and I'm having a hard time but you are an inspiration!

    You guys all rock and I truly hope and pray for strength and all the goodness for you all!

  • chickenlovva
    chickenlovva Member Posts: 58
    edited May 7

    @halyy2024 Hello! You are on the same as me, my first was the 25th of April. How are you feeling? It took me forever to get energy back! I honestly think I was and am fighting a sinus thing too as my kids are older but still brought home coughing and stuffy heads. I was going to do the Penguin cold caps but my onc talked me out of it which now I wish I did them. I did read that shedding is normal and it may slow down for you! Be gentle with your hair is a big thing I read too which you probably are. But anyways Welcome! Everyone is so sweet here.

  • lbn2222
    lbn2222 Member Posts: 42

    @halyy2024 I'm also doing 4 TC infusions and cold-capping. Started two days after you and I'm on the same schedule for shedding… Hoping it will slow down!!

    @kggenx and @bailey.boo sending positive thoughts to both of you!

  • halyy2024
    halyy2024 Member Posts: 36

    @chickenlovva i am feeling great now actually! The 5-6 days before I’m about to go in for my second round is when I’m starting to feel good again. Kinda sad that once u feel better it’s time for another round. But also happy that I’m getting this shit done and over with lol. Honestly I’m not sure if the cold capping is worth it…my scalp is really irritated and if this shedding doesn’t stop soon I might end up losing it anyway. My decision behind it was well the worst that can happen is I go bald anyway so might as well try..but it is a hassle not going to lie and there’s so many restrictions I feel like my hair is all I can think about these days.

  • halyy2024
    halyy2024 Member Posts: 36

    @lbn2222 fingers crossed that the shedding stops! Just hoping I look somewhat normal after all this. Is your scalp really irritated as well? It’s driving me nuts. It’s taking all my willpower not to scratch the hell out of it

  • grammie2
    grammie2 Member Posts: 215

    Thanks for the encouragement for Thursday @chickenlovva ! I agree on the poofy part of the wigs. I did have my hairdresser trim mine and plan to go back and let her take some more off now that I gave myself a crewcut LOL. My stylist has cut several wigs before and knows the techniques thankfully. When I bought mine, the store told me that wigs with bangs especially will need to be trimmed. They purposely leave bangs long where they can be trimmed as everyones foreheads are not the same.

    Hugs and prayers to you and everyone!!!

  • grammie2
    grammie2 Member Posts: 215

    Question for those on TCHP and have node involvement and have done at least one treatment. Did anyone experience armpit pain? I have, mildly, but it worries me it is growing and not shrinking. I've only had one treatment, but I read that early response is the goal.

  • ritafulmer14
    ritafulmer14 Member Posts: 5

    I had done some research on the cold capping and decided that it was more work, and no guarantee, for me to do. While I was in the process of making my decision, my physical therapist mentioned that there is a lady in Hood River, OR that makes a hair halo with your OWN hair. I googled her and found that she is a hair stylist and a breast cancer survivor. We exchanged emails and texts and then I set a date. My mom, best friend and I met with her and she explained the entire process. I knew that I would ugly cry the entire time she cut my hair but she had such a calming vibe about her, that I didn’t. I ended up feeling so comfortable with the process that I let her cut all my hair off. For now, I am just rocking the shaved head until my hair falls out, then I’ll start wearing my halo. If anyone is interested in what she does, check her out. Her name is Mary Fassel and her salon is Abbreviations. www.abbreviationssalon.com If you aren’t local, you can mail her your hair and she can ship your halo to you.

    The 1st picture is after my first chemo treatment.
    The 2nd & 3rd are after my haircut.
    The 4th is of me wearing my halo without a hat.
    The last picture is of me wearing my halo with a hat.

    PS. My hair dresser of over 25 years has been lying to me about the amount of gray hair I have. 🤣

  • grammie2
    grammie2 Member Posts: 215

    @ritafulmer14 that is so awesome!!!

  • bailey.boo
    bailey.boo Member Posts: 230

    @ritafulmer14 That is so cool! I love your style, and now I need to go online shopping for all the cute chunky earrings. You look adorable with the shave! It’s nice to have options, and your natural hair looks and sounds like a perfect solution!

    I’m not going to cold cap either. My only worry is a tender, raw scalp. I’ll probably go with scarves during that time. I got my hair extensions taken out this week and went with a very short, choppy bob. Its not my hair so much as I am convinced that my entire wardrobe just looks strange on me now!

  • moderators
    moderators Posts: 8,570

    That's such a great resource! Thanks for letting us know about it, @ritafulmer14!!

    And have to say that you're rocking the short hair look. ❤️

  • lbn2222
    lbn2222 Member Posts: 42

    @halyy2024 my scalp hasn't been so irritated so far. Hope yours is calming down!! Good luck - I think your next treatmen is tomorrow.

  • ritafulmer14
    ritafulmer14 Member Posts: 5

    @bailey.boo I also am concerned for the sensitive head and sun exposure. I will also be wearing scarves.

  • bailey.boo
    bailey.boo Member Posts: 230
    edited May 8

    Question for you all: Since my first chemo is delayed until Monday, would me keeping my Wednesday PET scan appt still be in the realm of possibility? I need to get that. I need to know what exactly I’m dealing with here. I’ve been sick to my stomach since those MRI results.

    On a more positive note, I everyone is doing well today! 💕 Thinking of everyone. I hope you’re feeling better by today, @kggenx, and you scalp burn has calmed, @lbn2222, and I hope everything goes well for you tomorrow, @grammie2, and hugs to everyone else, too.

    I just did something fun and ordered a few wigs from Temu, because what could possibly go wrong? 😂 They were stupid cheap— we are talking $4-12. One is a faded pink and purple ombré. I can’t find any results on this site using search, so I decided it is for research purposes. And, if I don’t use them, I can always donate them around Halloween.

  • grammie2
    grammie2 Member Posts: 215

    @bailey.boo I would say keep it and if you see you can't make it, call and cancel. They should understand the circumstances. For me day two was mainly brain fog and sluggish. They have me on a pill for nausea from chemo day and the next two days. I was on the constipated side the first four days from the steroids and iv nausea meds. But they say everyone is different and each treatment can be a little different.

    Sorry you were not able to start sooner. That stinks.

  • halyy2024
    halyy2024 Member Posts: 36

    @bailey.boo I would keep the appointment. I was fine the first few days. I couldn’t sleep from the steroids so I was up and doing things. I don’t know what regimen you’re on but I found a post here titled Tiffany’s twenty terrific tips for TC Chemo which is what I’m on and she said to take Zofran every 8 hours on the dot for the first 5 days after chemo starting the night of. I did that and never had any nausea the first round. Will see if it’s the same for this round I just had my second infusion this morning.

    @lbn2222 thank you! I’m cold capping as we speak. I spoke to the penguins rep and she said that my scalp may be irritated because the chemo is drying out my scalp. I already have curly mixed textured hair so it’s naturally on the drier side already. I’she suggested putting lots of leave in conditioner and braiding it loosely so that’s what I’m doing. It keeps getting tangled :( I think as the hair is dying off it’s tangling on the way out. My sister came over last night and spent 2 hours helping me detangle it, it was so bad. How’s your capping going? I’ve lost about 30% of my hair already.