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Starting chemo June 2021

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  • hangryflower
    hangryflower Member Posts: 12
    edited June 2021
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    Well, it's gone... Both my toddler and I gut buzz cuts on the deck this evening. Surprisingly he cried more than me! 😂

    It's a little uneven (my husband has a great heart but is not a barber, lol). I figure it'll either grow in or fall out. I took a pic with my son after our cuts were over and we were all cleaned up. I figure it's another milestone to recovery!

  • monarchandthemilkweed
    monarchandthemilkweed Member Posts: 166
    edited June 2021
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    btwnthestars, definitely stay with us since we had surgery the same time!

    Carlsoda, I do have three more to go. That makes this feel very manageable

    Lover of Jesus, good luck tomorrow! I have three kids - 18,13, and 6 It’s a lot to manage at times. I have a wonderful therapist who specializes in patients with cancer. There are times I wish my kids were all grown and out is the house so that I could have a little more space and time to heal and not always balance everyone’s needs but there are other times, I’m so thankful for my kids at home because they keep me rooted in the here and now

    Hangry flower, you’re so brave to let your husband shave your head. I am going to the wig store Thursday and am anxious and excited I made my 13 year old find a filter on social media to see what I’ll look like bald. It wasn’t too bad Then I made her get rid of my eyebrows Oh boy does that look odd! This is such a wild ride




  • monarchandthemilkweed
    monarchandthemilkweed Member Posts: 166
    edited June 2021
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    I woke up not feeling that terrible wired feeling I was feeling yesterday. I feel tired and slightly nauseous. Which is better then not being able to sit still like yesterday. Curious what this week will bring

  • moderators
    moderators Posts: 8,287
    edited June 2021
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    Just an FYI:

    Hug TODAY: Zoom virtual meet-up for people going through chemotherapy (caregivers welcome)

    Tuesdays 1:00-2:00 PM Eastern Time (US and Canada)

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  • btwnstars
    btwnstars Member Posts: 81
    edited June 2021
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    Monarch - thanks for the updates, hope side effects stay away!

    Hangryflower - that is cute that you and son had hair cuts together. will def be something to not forget

    Questions....

    What do you wear to infusion? Do they have you change into gown? Wondering about bra straps and if I just wore something loose where they could access port if I would have to change or not.

    Do you bring water/food with you? I've read in the prep threads about having snacks and things. Have you take this with you? I am assuming they will give water if I need it.

    I have been treating the cording in my left arm which seems to be working itself out, but I still have some swelling in my forearm. I am getting more concerned it may be lymphedema. I want to call to make an appt. but I don't even know how/when to do all that until I start chemo and see how it goes. I'm not normally a wisher of time to pass, but I am right now! Although the week seems to be flying now, Thursday will be here soon...

  • mle42
    mle42 Member Posts: 124
    edited June 2021
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    LoverofJesus - thinking about you today and sending positive and strong thoughts for your second infusion!

  • mle42
    mle42 Member Posts: 124
    edited June 2021
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    BtwnStars - No gown at my infusion center - though not sure that's completely standard everywhere. I wore layers, since medical places are always cold. No bra for me (figured I might as well be comfortable as possible), just wore a camisole with a strap that was easy to slip down, and a button up shirt, to make it simple to have the port exposed without undressing. They will definitely have water for you, I am pretty sure most places have a few snacks (crackers at least). I brought an assortment of food to my first infusion and actually did end up eating. For me I know that I feel better with at least a little something in my stomach.

  • Carlsoda
    Carlsoda Member Posts: 120
    edited June 2021
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    loverofJesus - good luck with the 2nd infusion and hugs for your 14 year old!!

    Hangry - what a fun experience to get your hair cut with your toddler - one day you will laugh at it! Must have been hard on hubs though!

    Monarch hope you feel better as the day goes on. I am still slightly nauseous (5 days out) and body still sore but I have it all under control which is the main thing! Take it easy today, rest, drink lots of water and eat every 2 hours!

    Btwnstars - I just wear comfy clothes. My place is hot so a tshirt is perfect but they do have hot blankets. I bring my own ice water and snacks. And don’t forget something to keep you busy! I watch my British murder mysteries on acorn tv! Good luck on Thursday!!


  • Jcatron243
    Jcatron243 Member Posts: 6
    edited June 2021
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    Hi everyone. I was diagnosed with IDC on February, had a lumpectomy in April, and tomorrow I have my first round of 4 TC treatments. Yesterday I had a PICC line placed, I’m pretty sore today but it should pass. My insurance company denied the use of Udenyca, so I will be getting shots of Granix. I live an hour away from my infusion site.

    Today I am working on hydrating to prep for tomorrow, anything else I should do today?

    I’m married with two teens. My daughter turns 18 tomorrow *bad day to start chemo. We are having a graduation/birthday party for her on Saturday (I hope I am up to it). She also has her college orientation next Thursday (the 8th) I am scheduled for a shot of Granix that day, but I am hoping to push it to the 9th so I can go with her. My son is 15 and is hoping to drive me to my appointments.

  • monarchandthemilkweed
    monarchandthemilkweed Member Posts: 166
    edited June 2021
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    good luck tomorrow Jcatron. Hope everything goes smoothly.

    I wore shorts and shirt to my infusion. I brought a sweater and socks but didn’t need it. They had blankets. I don’t have a port and they put the iv in my wrist. It worked fine!

    They have a good cart that comes around. Choice of sandwiches, snacks, drinks, granola bars. I did eat a sandwich!

    I knit and looked at magazines, texted and talked to my husband. Everyone was so nice. I had aromatherapy session, talked to a nutritionist.


  • loverofjesus
    loverofjesus Member Posts: 174
    edited June 2021
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    Hi everyone!! Second infusion went well! I got a stress headache and was not gonna take anything (bad idea) I finally gave in and I feel fine. No nausea just tired from crazy headache.

    I'm sure I'll have another steroid let down tomorrow into Thursday. But I'll just rest extra.

    The worst part of chemo to me is the horrible taste in back of throat like chemicals.

    I'm downing water like crazy. And fruit. I didn't do well on veggies today but I'm making good veggies tomorrow.

    Got to clean house tomorrow. May split it into two days.

    But I'm feeling good and praying that this is what God uses to help heal me.

  • monarchandthemilkweed
    monarchandthemilkweed Member Posts: 166
    edited June 2021
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    day 3 of first infusion. Trying to stay on top of the nausea. Not fun. Bearable. But not fun. Staying hydrated and have forced myself to eat a bit. Very tired. Hoping tomorrow is better. Yuc

  • Carlsoda
    Carlsoda Member Posts: 120
    edited June 2021
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    I am sorry Monarch - today I am dealing with heartburn (I’m on day 6) and only food pushes it away but then it comes back again. Tums doesn’t help either! I remember last time by day 8 I was feeling pretty good - so maybe that means only one more day of ick! 🤣

    Lover - sorry about the bad taste. That’s the only symptom I haven’t had! Hope it goes away soon. Do you think mints or gum would help?

  • loverofjesus
    loverofjesus Member Posts: 174
    edited June 2021
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    Hey Carlsoda,

    I have had my second infusion and I have not really heartburn but what I call acid reflux or gerd.

    It kept me up all night last night. Ugh!!! But I'm with you Tums don't help a lot. It did give me a couple of hours sleep. Just not a full night. If you find anything let me know. Cause it was miserable.

    I have tried gum and candy and while they did help some with the taste not much. But gum helps with the heartburn a little. Oddly enough.

    So glad we have each other. I'm blessed as I have not had any nausea, but I think it's from all the long term nausea meds they give in my Infusion.

    I have oral meds I can take if needed but so far The infusion meds have done the trick.

    Oh yea, my hair is starting to shed like a sheep dog 😆I have really thick hair so it does not show much yet but the sink is full after I pick gently through my hair

    I love being able to bounce stuff off of each other. Makes me feel less alone.

    Love and hugs to al

  • btwnstars
    btwnstars Member Posts: 81
    edited July 2021
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    Carlsoda & LoJ - were u prescribed a med for indigestion/heartburn? Mine gave me omeprezole and that’s the one drug they started me taking before I go for infusion. Maybe ask if you can get something like that, a bit stronger than tums. I usually also prop pillows up and sleep on incline.

  • loverofjesus
    loverofjesus Member Posts: 174
    edited July 2021
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    Btwnstars,

    No my dr didn't but I think I'll ask!! Thank you!

    Also my hubby and I have an adjustable bed frame so I have been sleeping propped which has been a super great. Never expected this is what I would use my adjustable mattress for but it has come in handy and I imagine it will when I have my surgery too.
    ☺️


  • Jcatron243
    Jcatron243 Member Posts: 6
    edited July 2021
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    My first infusion went well yesterday. My potassium was low, so the doctor called in a prescription for me. Thismorning I am nursing a smoothie with banana, avocado, carrots, and almond milk. I had to pee a lot overnight, and about 4 am the nausea kicked in. I go in for a shot of Granix later today, my infusion center is an hour away.

  • Carlsoda
    Carlsoda Member Posts: 120
    edited July 2021
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    Jcatron - sorry you had to go back for your shot. My infusion center is 45 minutes again so I understand the annoyance of having to drive there again!!

    Lover - I bet it’s acid reflux I had. Never had it before in my life and that’s why tums doesn’t work. I ended taking a Zofran and I feel much better today!

    Hope everyone is feeling okay today. I finally feeling better. Thank goodness I can have 2 weeks of feeling okay or I wouldn’t go back 🤣

    Hugs to you all!!

  • Carlsoda
    Carlsoda Member Posts: 120
    edited July 2021
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    oh I forgot to ask - has anyone had their onco talk about after chemo and hair regrowth? My clinic recommends Nioxin Cleanser and Scalp Therapy. And they say to wash hair every other day or less. Just wondering what others are hearing. Can’t wait to move to this stage!

  • Paki
    Paki Member Posts: 5
    edited July 2021
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    Greetings, everyone! After reading many chemo-related articles on Google from varies experts, I was hoping to hear from actual people who are on the receiving end of chemo therapies. I'm happy to find this forum on a trustworthy website, and looking forward to learn from your collective knowledge. TIA =)

    From my limited understanding, people would get different chemo drugs based on their pathology exam and oncotype test results, etc. I had my first infusion on 6/22, with Cytoxan & Taxotere, plus a shot of Neulasta.

    Do some of you have, or have had the same? & What are your side effects? So far, the absolutely worst part for me was the bone pain! *shudder*

  • mle42
    mle42 Member Posts: 124
    edited July 2021
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    Hi Paki,

    I'm so sorry you have to be here, but glad you found this site. I have found it waaaaay more informative than the official pamphlets the nurses give out!

    I'm on a different regimen (Adriamycin+Cytoxan, will be followed by Taxotere), but can offer one hint for the bone pain from Neulasta - take a Claritin once per day, starting the day before your Neulasta shot and continuing for 3-5 days after. Doesn't work for everyone, but apparently does a pretty good job of minimizing the bone pain for most people. I got lucky and had zero bone pain - don't know for sure if it was due to the Claritin or not but you better believe I'm going to keep taking it!

    My second infusion is tomorrow. Not looking forward to it, exactly, but reminding myself that after tomorrow I will be 1/4 done with chemo!

  • moderators
    moderators Posts: 8,287
    edited July 2021
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    Welcome, Paki! We're glad you've joined our community and we hope you find the support and information here that you need. We hope the rest of your treatment goes well!

    The Mods

  • loverofjesus
    loverofjesus Member Posts: 174
    edited July 2021
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    Ok guys I’m gonna need some encouragement!

    My hair is falling out in chunks. I’m so sad. This just seems to make it so real!!! Maybe I was in denial or something. But now it’s real I’m going to be bald. I have two wigs that I have no clue how to use but they are cute so maybe I can figure it out!

    Just having a hard time mentally today I guess.

    Thinking of you all and hoping the ones starting chemo are doing well.

    Hugs

  • Carlsoda
    Carlsoda Member Posts: 120
    edited July 2021
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    Hi Paki - so sorry you have joined our little club! I am on the same regimen as you are but @mle42 is right Claritin can help! I have bad body aches from the taxotere and take 3 Advil x 3 times a day to keep it under control, nausea, acid reflux and just plain tired out but it does get better. Wishing you the best - soon we will all be on the other side healing!!

    Lover - I know exactly what u r saying. I try to avoid the mirror at all costs. Just too sad. But I have had some fun with scarfs - don’t feel quite as weird as when I wear the chemo caps!

  • monarchandthemilkweed
    monarchandthemilkweed Member Posts: 166
    edited July 2021
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    i went for my wig consultation yesterday and it went better than i expected. I won’t pick it up for two weeks. Not sure how i will feel about wearing a wig. I imagine wearing it to work (preschool teacher).

    My nausea seems to be my worst symptom. That and I think I’m having hot flashes. I’m very bothered by heat and easily get overheated. We’ve had to crank the a/c Our electric bills are going to be so high

    On one hand i feel like ok now it wasn’t that bad But on the other hand I can’t believe I have to do this 3 more times Then I think of my sister who is on her 8 or 9 th chemo treatment


  • btwnstars
    btwnstars Member Posts: 81
    edited July 2021
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    1st infusion yesterday & this AC is kicking my butt! The hospital go to is merging with a private practice so was some delays. My appt was 12:30, but didn’t get to meds til about 4. Everything went fine with infusion. However my symptoms came on like 5 hours later which I didn’t expect since all my meds were labeled for the next day.

    I ended up taking Ativan to get some rest, woke in the night and got sick, then took a compazine and that helped. Now I am taking them routinely.

    Having trouble with eating and even getting enough water at this point. Praying the neulesta has mercy on me. I though maybe I would handle ok and be manageable but I am basically planning for bedridden days going forward.

    All I know is I am ready for October to get here!

    You all sound like you are managing well. I kno they said nothing real hot to eat/drink. Are you able to drink tea (cooled a bit), I may try like a fruit smoothie too just to get some nutrients

  • Paki
    Paki Member Posts: 5
    edited July 2021
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    @mle42 & @Carlsoda & @Moderators: Thank you, ladies, for your kind words and advice! It is great to find a nice community here. =)

    Yes, I have been taking Claritin daily since the chemo started, per doctor's instructions. I think it helps in general to dull the bone pain. It was manageable w/o painkiller most of the 1st week, but on day 5 of Neulasta injection, OMG, I thought my lower back was going to break in half. I had to curl into a tight ball to wait for Tylenol extra strength kicking in to be able to straighten up again. I'm dreading the next 3 rounds, but yes, we will be on the road of healing soon after!

    Have a nice July 4th weekend, everyone!

    @mle42: hope your 2nd infusion went well today!


  • Paki
    Paki Member Posts: 5
    edited July 2021
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    @BtwnStars:

    I'm so sorry to hear your symptoms started only hours after infusion. I hope it will all calm down to a more manageable level for you soon.

    Here's some ideas about drinks... we're supposed to drink a lot of water, but plain water doesn't help mask the weird taste in the mouth that often comes with chemo. So I've been trying out different things. So far, I find these helpful:

    Tea - mostly decaff or herbal types, so it wouldn't interfere with meds or sleep

    Ginger ale / ginger brew - other than taste, this also helps a bit with nausea and upset stomach

    Naked Juice - Costco has a variety pack with small 10-oz bottles. It is nice to have different flavors to change around, and not too big of a bottle to waste if I got too sick to finish one.

    Take care!!!

  • monarchandthemilkweed
    monarchandthemilkweed Member Posts: 166
    edited July 2021
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    btwnthestars- chemo kicked my butt day 3. Day 2 and 4 wasn’t fun but 3 really sucked. I was able today drink water watermelon tasted good. I hardly ate. I forced myself to eat toast and cereal. I had to take stool softeners too since I wasn’t eating fiber.

    The compazine made me sleepy which was a blessing cause at my worst I couldn’t read or watch tv. My eyeballs hurt and I just felt uncomfortable in my skin.

    Today is day 5 and I feel human again. It does get better and pretty quickly it seems. The horrible thing is knowing we have to do this again and again and again.

    Hang in there ladies. I think of all the ladies who came before us in the battle. They are with us in spirit

  • btwnstars
    btwnstars Member Posts: 81
    edited July 2021
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    I need to clarify what everyone’s day numbers are… like is chemo day, day 1 or do u count day 1 as the first day after treatment?

    I am eerily feeling ok today. I am wondering if I am just going to have symptoms early?! I am ok with small, slow eating, for some reason a half of English muffin is doing the trick and that’s something I never usually eat! I managed to have my typical oatmeal with blueberries, flax, collagen powder, and almonds.

    I am keeping on schedule with compazine, not waiting for nausea to start. I was given 2 different dosages, 5 and 10, so sticking to 5 during day bcz it def knocks me out a bit. Then taking the 10 at bed.

    Phew, I think I can do this, even if it does get cumulatively a bit worse… thank God it’s only 3 more of the AC!

    Thank u all for sharing your stories, it helps so much.