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Starting Chemo May and June 2024 Support Thread

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  • lyniepooh
    lyniepooh Member Posts: 5
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    Starting my chemo this week 5/6. Any suggestions on how to navigate this would be greatly appreciated!!!

  • bailey.boo
    bailey.boo Member Posts: 134
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    hi @lyniepooh 💕

    I was supposed to start chemo this AM, but it’s getting delayed due to an allergic reaction with my port inserted on Friday, most likely from the adhesives and tapes.

    Hopefully very soon, either this week or early next, I’ll start a 6-month, every-3-week TCHP protocol (Taxol, Carboplatin, Herceptin, and Perjeta), with the H&P given as a shot.

    So far, I’ve packed a rolling bag with compression gloves/sleeves/socks, ice mitts and booties, and an insulated lunchbag for ice packs.

  • moderators
    moderators Posts: 8,190
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    Welcome, @lyniepooh! We're glad to have you, and @bailey.boo here in the May chemo group. Getting started with chemotherapy can be overwhelming, but you are not alone. Take a moment to explore this thread where you'll find practical tips and experiences from other community members who've navigated chemotherapy. We hope you find it helpful! Looking forward to hearing more from both of you!

    The Mods

  • bailey.boo
    bailey.boo Member Posts: 134
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    Thank you, @moderators! This is a great list of resources and ideas!

  • jlhmom75
    jlhmom75 Member Posts: 13
    edited May 10
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    I started chemo on 5/2. 24 week plan is for 4 cycles of Taxol, Carboplatin and Keytruda every 3 weeks. Then 4 more cycles of Adriamycin, Cytoxan and Keytruda every 3 weeks.

    I’ve had quite a few side effects, but manageable. Looking forward to getting to know the group.

  • moderators
    moderators Posts: 8,190
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    Welcome to the May chemo group, @jlhmom75! We're glad to have you here, and super glad to hear that you're managing the side effects. Feel free to reach out if you need any assistance along the way. Whenever you need us, we're here to help. 🤗

    The Mods

  • bailey.boo
    bailey.boo Member Posts: 134
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    hi @jlhmom75. Nice to meet you. My chemo start date was delayed, so I’m kind of straddling threads for my chemo start month. I’m so glad your side effects have been manageable this first go-round. Gives me hope!
    My cancer is HER2+, but we’ll be commiserating with the taxol and carboplatin. I hope you have a wonderful weekend 💕

  • sarahjunefox
    sarahjunefox Member Posts: 33
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    Hi all! I'm starting chemo on the 20th, 6 rounds of TC. It feels so much out of my control so I'm doing everything I can to get prepared, to control the wee bits that I can! I got my eyebrows micro bladed, got my wig, have a lovely immune boosting juice subscription. What else do I need?

  • lyniepooh
    lyniepooh Member Posts: 5
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    Hi @bailey.boo, had my first chemo treatment last Thursday (5/9). Had some reaction and was there for 10 hours (ugh)….but did get the whole treatment. I'm also HER2+ after several back and forths with pathology. 1st Day after treatment I felt so good….was out washing windows…after that first day it's been downhill, a little nauseous and a headache that won't seem to go away. Trying to stay hydrated and taking tylenol and switching to ibuprofen. See the oncologist NP Tuesday and then 2nd treatment on Wednesday. Hoping to feel good enough to go see my beloved SF Giants play on Sunday (5/19). And the tapes/adhesives are no joke!!! When I had the biopsy I pulled the tape off and it pulled my skin off with it looked worse there than the actual biopsy site. Hope your port site is better.

  • moderators
    moderators Posts: 8,190
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    Sending you all hugs 🤗!! xoxo Your Mods

  • bailey.boo
    bailey.boo Member Posts: 134
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    hi @lyniepooh. Ugh. I’m sorry you had to deal with a reaction like that, and I hope you start feeling fully better soon. Your post is perfect timing for me— thank you for the great info!
    My port site called down, and, even though a cat gouged me across my chest yesterday and it’s all puffy, I had my first session today. It went well! port worked instantly with no pain, and no reactions at the center or home so far. didn’t get the arm med (starts with a C) to combat WBC Issues because of an insurance wait (if it comes through today or tomorrow, I’ll run in to get it), but I’ve been holding my breath to feel side effects. Sounds like it WILL hit, so I will just hydrate, hydrate some more, pamper myself extra hard, and enjoy this calm before the storm.


  • bailey.boo
    bailey.boo Member Posts: 134
    edited May 13
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    hi @sarahjunefox What a great and proactive list! I wish I would’ve thought about half of that stuff before I started and taking care of it. That way, things like wigs and facial hair wouldn’t have been a rushed afterthought. I do have temporary tattoo, eyebrows bookmarked, just in case, but I worry that they’ll be hard to work with and go on cheap, wonky, and crooked 🥸

    Look into whether you could use compression sleeves/gloves/socks and ice mitts/booties. I read and it was recommended to me time and again to get those because the T and one of the chemos can cause neuropathy and nail issues. Also, I forgot to bring a headset or EarPods today, so I really couldn’t log into any of my meetings. I’m so pleased I can request a cubicle at my center and work! I didn’t today, being my first time, but I brought my devices and tested the collaborative things with a coworker.

  • sarahjunefox
    sarahjunefox Member Posts: 33
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    @bailey.boo I've just ordered some compression gloves and socks, thanks for the reminder! I feel like I should start packing my bag today so I don't forget anything 😅

  • bailey.boo
    bailey.boo Member Posts: 134
    edited May 14
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    oh good. I hope everything goes very well for you!! 💕

    I already have a new store list going. My neulesta was approved finally, so I’m going to swing by this afternoon to get the shot. I need plastic utensils and things not in cans. My beloved canned Greek chicken lemon orzo soup was the NASTIEST thing ever yesterday! So gross! I’m hoping to hit publix on the way home for instant mashed potatoes and maybe some plastic containers of Panera soup in the deli.

    Oh, also, if you have cats, get N95 masks and gloves to wear. It’s working well for me, I think! I put my husband d in charge ONE DAY, and it was chaos! Lol! He started yelling there are just too many cats. My son tried for me, bless him, and he just gags and gags.

  • bailey.boo
    bailey.boo Member Posts: 134
    edited May 14
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    How are you feeling today, @lyniepooh ? Hope your appt goes well today and your side effects are all gone away before game day!

  • justsnapd8
    justsnapd8 Member Posts: 19
    edited May 16
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    Hey girls, I just did chemo class today. I'm overwhelmed, though I do have a great support system. I should get the port Friday, and start chemo next week. I'm terrified!

    @jlhmom75 I'm also triple neg and I think I'll be getting the same chemo regimen. How are you?

  • sarahjunefox
    sarahjunefox Member Posts: 33
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    @bailey.boo Nice one on the Neulasta. I'm dreading the stomach needle. Amazing the things that scare me!

  • jlhmom75
    jlhmom75 Member Posts: 13
    edited May 16
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    Hi everyone! @justsnapd8

    I also struggled with the adhesives. Two weeks later it's finally mostly healed up. Thankfully, they have now put in my records that I'm allergic to it and are now just using paper tape. Lab tech was telling me that it seems like many more people have been reacting recently. Strange.

    I'm now two weeks past my first infusion. It has not been smooth-sailing, but it also hasn't been as bad as I thought it would be. Lots of digestive issues, but no vomiting. Dehydration to the point of being faint and unsteady on my feet. That is what I have learned the most - DRINK, DRINK, DRINK! Once I was rehydrated (which took days and a bag of IV fluids), my mouth got mostly better as well. Not sure if that is timing or the rehydration. Mostly doing okay right now.

    Got the results from many of my tests which were mostly good - echocardiogram, bone scan. But the CT scan showed a spot on my hip that they want to look at more closely so now I need a PET scan next week. So back to the anxious waiting.

  • justsnapd8
    justsnapd8 Member Posts: 19
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    @jlhmom75 I'm so glad you checked in. You sound like a real trooper! I don't drink a lot as it is, so staying hydrated will be a challenge for me as well. I hope you hear soon about your hip, and that if it's worrisome, the chemo knocks it out.

  • harley07
    harley07 Member Posts: 304
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    @sarahjunefox - with regard to the stomach needle for the Neulasta injection - I just had my first injection today and they gave it me on the back of my upper left arm (non-breast cancer side). So it may be worth asking about if you would prefer that. YMMV.

    NOTE: I have been lurking here but not commenting. While I had breast cancer 3.5 years ago I did not need chemo; however I am currently being treated with Taxol/Carboplatin for ovarian cancer. Had my 2nd round yesterday.

    Good luck!

  • jlhmom75
    jlhmom75 Member Posts: 13
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    @justsnapd8 I've been doing pretty well. I'm two weeks post first infusion. It has not been smooth sailing, but also not as bad as I was imagining. I'll try to detail some here to give you a glimpse into what I have experienced.

    Days 1-3, a little tired, a little nausea, dry and icky mouth. But biggest problem was my digestive tract basically stopped. I think it was from the fentanyl they gave me during the port installation the day before the infusion

    Days 4-6, I took milk of magnesia to move my digestive tract along, but then it went the other way. And because my mouth and belly were not settled, I didn't drink enough and ended up faint, clammy and not steady on my feet. I had a couple of scary hours trying to stay conscious as I tried to get enough fluids in. I probably should've gone in to get fluids then, but we ended up handling it on our own. Took days though to get back to okay. Ended up getting IV fluids ion day 8 because I was into the doc for the one-week follow up. After that I started being more steady on my feet.

    Days 7-14, mostly okay, but tired. I ended up getting a rash the doc thinks from the Keytruda. Back on steroids for that.

    Couple of things that have helped me:
    Dry mouth - the Biotene mouthwash has made a big difference.
    And DRINK, DRINK, DRINK

    My concern today is that my scalp started hurting a couple of days ago. My hair started falling out in earnest yesterday. I think today, I'm going to have my husband cut it all short. This is messing with me more emotionally than I thought it would.

  • justsnapd8
    justsnapd8 Member Posts: 19
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    @jlhmom75 Thank you for sharing that information, I appreciate it. It sounds like the digestive tract will be challenging. To move or not to move. I have Miralax, and I picked up Imodium today.. and a few other things, Biotene being one!

    I was supposed to start next week but it will be June 11 instead. I'll be on vacation May 31st through June 9th, so that would break up the schedule on the Taxol, they want to give me that one every week. So we're just gonna start when I get back.

    😘

  • sarahjunefox
    sarahjunefox Member Posts: 33
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    I have a nasty head cold at the moment which I'm sure is worse due to the stress and nerves about starting next week. Is there any way this might delay my first dose? I am FULL of ginger and turmeric at this stage trying to fight it off. 🤒

  • amesisland715
    amesisland715 Member Posts: 6
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    Hi all! I am 51 with newly diagnosed Stage IIIA BCA on the left side. I started TCHP on Wednesday 5/15 - Feeling fine so far except for a little "weirdness" this morning. I am hydrating as much as possible and eating 5-6 small snacks/meals. I was able to go home with the Neulasta OnPro on my arm which was great not to have to go back to the clinic for the shot! I finally get to take a shower today after having my port placed 7 days ago! Yay for appreciating the little things such as showering! My mom had BCA two years ago and warned me that the Neulasta made her bones ache terribly for 8 days-she could barely walk. I started taking Claritin daily last week on the recommendation from this website (and the okay from my oncologist) which hopefully, will help. So far so good.

  • sarahjunefox
    sarahjunefox Member Posts: 33
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    "Yay for appreciating the little things such as showering!" Yes to this!! If it weren't for the small things, the big thing would be way too overwhelming.

  • fossf56
    fossf56 Member Posts: 17
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    Starting TCHP in 2/3 weeks for 4 sessions every 3 weeks. Next week I have echocardiogram, brain MRI, bronchoscopy for some lymph node activity and need to get my port as well.

    Freaked out by all of the things I need to do, but also eager to get this blasted out of my body.

  • justsnapd8
    justsnapd8 Member Posts: 19
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    @fossf56 Seems like you're caught in a whirlwind at first. I got the echo, the body scans, and even the port. It's crazy how fast everything gets done.

  • bailey.boo
    bailey.boo Member Posts: 134
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    hi! I started THCP on Monday, so 2 days before you. The remaining 5 rounds will be on Thursdays, so we’ll probably be going through each round together at the same time. How are you feeling?

    Other than across-the-board expected side effects, the only big issues for me were fatigue and a lot of GI issues. The fatigue is fading day by day. The GI issues remain. I’m learning I need to follow a BRAT diet during this. Any veer, and boy am I sorry!

    Hope you’re feeling good!

  • bailey.boo
    bailey.boo Member Posts: 134
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    Hi, @fossf56. Hope all of your testing goes well and you can get a solid team and plan in place. It’s a lot to get to the point, but I felt so much better once I had one.

  • sarahjunefox
    sarahjunefox Member Posts: 33
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    today is day 1! I’m nervous and excited to get it over with!!! The waiting has been the worst part of everything for me. Waiting for results, waiting for surgery… I’m a bad waiter 😅. I have this poster in my house and I keep looking at it. This will be rough but it’s for a very good reason and I want to be alive for a very very long time with my sweet family.