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Starting Chemo in May/June 2023

A place for you all to gather and share. We're all here for you!

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  • heather2js
    heather2js Member Posts: 3

    Hi all,

    I just had my first TC round last Tuesday, and tomorrow I see my MO for the follow up. I felt so good this weekend after a few days of feeling like I was beaten with a baseball bat, that I sort of overdid it. Today I was able to rest, but the bone pain in my pelvis is less than great. I also had diarrhea today, but only the one time, thanks to immodium. The same happened a few days earlier. So I didn't feel the need to report it. Hopefully not a mistake? Guess we'll see.

  • moderators
    moderators Posts: 7,639

    Welcome, heather2js! We're sorry you find yourself here, but we're glad you joined our community and hope this place can be a source of support for you.

    Diarrhea is pretty common side effect of chemo, but it's always a good idea to report new side effects or changes to your medical team so they are aware and can help work to resolve them should they become less manageable. This thread HERE is a great resource of tips from our community on managing this particular side effect.

    We hope your follow-up goes well tomorrow, and we hope the rest of your treatments go well. We're all here for you!

    The Mods

  • linru
    linru Member Posts: 11

    Hi everyone,

    I have my first of four T&C cycles 6/5. I’ve found this website helpful in managing my pre chemo jitters. I’ll be sure to check in and let you know how it’s going. Glad to know I’m not alone.

  • moderators
    moderators Posts: 7,639

    Welcome, @linru! So glad you found us. :)

    You may also benefit from our free weekly virtual meet-ups with other BCO members where you can share and ask questions in real-time. It's a nice addition to the boards! We have a list of them here: https://www.breastcancer.org/community/virtual-meetups

  • beetlemom
    beetlemom Member Posts: 18

    Hello! Starting chemo by the end of the month, but onc just left for two weeks (argh!). Getting the port in week after next, along with echo and blood tests. I'm HER2 positive, so it feels scary not to be moving ahead asap with chemo...

    Great to meet everyone, although would have been nice to meet at a ball game or garden party instead! :-)

    I'm so glad to be able to share in this odyssey with a group of strong sisters

  • linru
    linru Member Posts: 11

    Just finished my first T & C round, of four. Was uneventful, even with Paxman. Must have been my beyond patient husband’s effect at keeping me calm.

    I think the premeds helped, esp. the steroids. I’m awaiting how I’ll feel after my OnPro injection tonight. The symptoms I have today are watery eyes and mildly irritated throat, but maybe it’s from the Quebec fire, our skies are hazy here.

    Drinking lots of fluids today!

  • linru
    linru Member Posts: 11

    I’m so happy to meet you both, and appreciate the opportunity to support each other!

    My chemo was delayed a couple weeks while waiting for Oncotype. My score led to the recommendation for chemo, so it’s chemo, radiation, and an AI for me.

    My dx is ILC: stage1, grade 2, ER+, PR-, HR-.

    Doing Penguin cold capping which can keep me distracted during chemo time in the chair.

    Best wishes for successful treatments to my fellow travelers💕

  • beetlemom
    beetlemom Member Posts: 18

    What are some thoughts on what it's like to have/get a port? For some reason, it makes me more nervous than the surgery did!

    Looking forward to hearing how the Penguin cap works!

    And I'll say it again, it feels like such a relief to be here sharing this journey together. :-)

  • linru
    linru Member Posts: 11

    The port insertion went smoothly, I had anxiety beforehand, but deep breathing and twilight anesthesia got me through. I don’t really notice it now after 2+ weeks and it’s hidden under the skin which is nice in summer.
    I’m actually doing Paxman, not Penguin. I’ll update on that too. I’ve got to remember to baby my hair before the next round or hair loss starts.

    Hang in there friends, we can do this together 💕

  • beetlemom
    beetlemom Member Posts: 18

    Thanks, Linru! That's super-reassuring. You look awesome and so strong there!!!

  • linru
    linru Member Posts: 11

    Thanks, beetlemom! Thought a picture captured the moment better than words. Stay strong, and positive, we can get through this!

  • ms meow
    ms meow Member Posts: 6

    I will be starting chemo soon. Just waiting for insurance approval, then we’ll schedule it.
    I’m so nervous.

  • beetlemom
    beetlemom Member Posts: 18

    Linru, I know you're right! And I have a profound feeling that we will end up stronger because of this experience, counterintuitive though it feels to me.

  • beetlemom
    beetlemom Member Posts: 18

    Ms Meow, me, too, nervous! I'm glad that you're here….at the same time that I'm sorry that you (and all of us) are here. ❤️

    It has been profoundly relieving to be part of this group, going through th journey together.

  • linru
    linru Member Posts: 11
    edited June 2023

    Hi ms meow, I found the waiting before chemo started very stressful. You aren’t alone with those feelings. I’m glad you’re here.

    I’m now 6 days post chemo and feel pretty good, past the bone pain at days 3-4.

    Just had 2 inches cut off my hair so it wont be too wild through the minimal combing. Let’s hope the hair cooperates! If not, I bought some hats and beanies.

    So glad we have found each other to offer support and encouragement.

  • beetlemom
    beetlemom Member Posts: 18

    Heather2js, just realized that when we all joined, I think most of us missed your post (I just noticed it myself). How did the first chemo week go for you…do you feel better? I hope your doc was able to help you with the pain…

  • linru
    linru Member Posts: 11

    Back after a few days off due to bone pain that settled in my back and pelvis. Tylenol and Motrin were helpful, in addition to the Claritin.

    I hope everyone is doing okay-I’ve discovered it’s a day by day process. Today I’m going to enjoy feeling well, and do something outside.

  • beetlemom
    beetlemom Member Posts: 18
    edited June 2023

    Just got my port in today. It was much less daunting an experience than I expected!

    Question for the group: post-surgery, I've had a few palpitations and my heart feels a bit pound-y sometimes, plus I have about 3" of bruising. Does this sound pretty normal, based on your experiences?

  • linru
    linru Member Posts: 11

    Hi Beetlemom! My heart rate was elevated the day I got my port, and days after. I had it checked out and it was stress related so now more meditation.

    From what others have written there is some ‘pushing’ and ‘pulling’ when they put the port in so I don’t think bruising and soreness is unexpected. Soon you’ll be close to forgetting it’s there.

    Hope you all enjoy this weekend.

  • ms meow
    ms meow Member Posts: 6

    this anticipation is rough. In anticipation I got 12-16 inches cut off my hair (from below my breast to my chin) and some purple dye. I love it! I get my port next week, June 27th….another step closer and I’m afraid of feeling Oogie.

  • millz
    millz Member Posts: 3

    Hi everyone! Newbie here! I am 43 years old and have 6 children. My dx is Invasive lobular carcinoma: stage1, grade 2, ER+, PR+, HR+ (triple positive). I had a lumpectomy with 3 lymph nodes removed on May 4th. Had my first infusion of Taxol and Herceptin 6/14 and 2nd infusion today. No port but I am a hard stick so the nurse mentioned I may need to talk to my onc about getting one. Today they were able to get the IV in a small vein and when they hooked the taxol up, it started burning.

    I also took the initiative to chop my hair into a pixie cut immediately after my first infusion last week. I have never in my life had short hair so this is a huge adjustment. I wanted to be the one in control of when my hair became shorter though and will completely buzz it once it really starts to fall out. I decided against a wig and have bought a bunch of hats and scarves.

    I am happy to have such a supportive group who is going through this awful journey as well and can relate. I have a wonderful support system but none of them have gone through what I am so it is hard for them to relate. My husband has been the best but I know he sometimes doesn’t know if he’s saying the right things and most of the time I am just looking to vent.

  • beetlemom
    beetlemom Member Posts: 18
    edited June 2023

    Thanks, Linru! Definitely feeling better now…and reframing the port as a helper button!

    Love the purple hair idea, Ms Meow! I shaved my head a couple of days ago…

    Millz, hope the infusion went well for you today! I agree that cutting off hair is really, really hard, and I'm sorry that you're here…but glad at the same time. I love having this group to check in with aand to support each other.❤️

  • moderators
    moderators Posts: 7,639

    Welcome @millz! We're so very sorry for the reasons that bring you here, but we're so glad you've found us. You're sure to find our community an incredible source of advice, information, encouragement, and support while you navigate your care. We're all here for you!

    Others will surely be by soon to welcome you to the "chemo crew." In the meantime, you may also be interested in joining us on Zoom where we have 2 weekly In Treatment meetups.

    We hope this helps and look forward to supporting you!

    —The Mods

  • linru
    linru Member Posts: 11
    edited June 2023

    Hi Millz! Welcome to our little group. It’s nice to meet women going through the same things at the same time. We are here for you!

    Meow, how awesome to rock the purple hair! This is an opportunity to try all the hair ideas we’ve been too reluctant to try before. I lopped off a few inches but seems like my hair will be a work in progress this summer.

    Beetlemom, “helper button” is too funny. My port does feel like a doorbell under my collarbone, now that I think about it. The steroids they give around chemo are a big help, along with the other meds we are advised to take, in managing symptoms. My worst symptom was the bone pain, all other symptoms were minor.

    My second round of T &C is Monday, so getting everything in order at home, and enjoying feeling good.

    Sending positive vibes your way!

  • millz
    millz Member Posts: 3

    Thank you everyone for the warm welcome! Love how you ladies have names for your ports. They both sound pretty accurate. Meow- I am known to add some purple lowlights in my red hair. Love purple!


    Hope everyone is feeling well! I have found that with the high dose of steroids they give before treatment that it is awful for me to fall asleep and stay asleep. Last week was terrible so yesterday I took some Tylenol PM but it only helped a little. I just ordered some sleepy Tea so we will see if that helps next week. Anybody have a similar issue and knows of something that works well?

  • parsnip6206
    parsnip6206 Member Posts: 2

    Had my 4th (of 6) TCH chemo last Tuesday and feeling SO yucky. Nauseous, achy, weak, tired (but can’t sleep), pounding headache, heartburn, sore mouth. Went for some fluids today but just feeling like a weenie. Hopefully just a couple more days and I’ll start to crawl out of the black hole.

  • linru
    linru Member Posts: 11

    Just did chemo 2 t and c Monday; chemo and cold capping went well. I’ve still got hair, but eyebrows sparse. My energy is a little lower than last time so I’ll be sure to pace myself. Hope everyone is managing, and remember you can get through this!

  • linru
    linru Member Posts: 11

    Welcome, Parsnip. Hope you feel better in a few days. Today my feet and legs feel like lead, and I just want to rest. I think I know how you feel.

  • axle1
    axle1 Member Posts: 2

    I go for my 2nd T and C treatment on 7/10, very stressed about it. Hope it is better than the first time. Trying to stay more hydrated this time. My hair started falling out this week, so I am going to get the rest shaved off. Cold capping was to expensive at my facility. Does anyone do anything to help lessen nerve damage of toes and fingers? Hope everyone feels better and prayers for all.

  • snailpwr
    snailpwr Member Posts: 9

    Hello

    I am getting my port placed today. I start AC on Tuesday. I am exploring the fasting method to help with side effects.

    I didn't see a thread for those starting in July.