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Starting Chemo May and June 2024 Support Thread

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  • bailey.boo
    bailey.boo Member Posts: 134
    edited May 20
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    That is an amazing poster that gets right to the heart of it. Thinking of you today, @sarahjunefox❣️ Hope all goes very well for you.

    I have my second appt with my main oncologist this afternoon. I’m compiling my list of questions.

  • jlhmom75
    jlhmom75 Member Posts: 13
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    Checking in. My second infusion will be on Thursday. Right now I’m doing well, most of the SE have subsided.

    Had my PET scan this morning and I’m pretty anxious about it. I’ve mostly wrapped my mind around the “breast cancer” but the idea of it somewhere else has me upset. Hope the results don’t take long.

    90% of my hair is gone. I really didn’t understand how much my scalp was going to hurt! Hope that subsides. I bought so many types and styles of hats and a few wigs. And returned most of them. Nothing feels or looks right! Ugh.


  • bailey.boo
    bailey.boo Member Posts: 134
    edited May 21
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    Best of luck tomorrow, @jlhmom75 I hope everything goes as well as possible! I hope your PET scan results are fast and all clear.

    I’m with you on the scarves, hats, and wigs. I’ve been gifted a couple scarves, and the hospital social worker brought me a couple of wigs in a bag when I was there for infusion and asked about wigs— a poofy carrot top orange (I have fair olive skin) and a bright pink bob. I’m not a crier, and they make me cry. I don’t know how to tie the scarves right. The wigs I will donate back. I bought some stuff off of Temu since, for fun, and I swear they are better quality than the hospital wigs, but they are still pretty bad, and they smell like dead people. There’s an ombré mauve and plum one that might work with a cut/shaping, but I’m 50, and

    my husband was like NO. Maybe it’ll help justify the cost of a good wig. 😛

  • justsnapd8
    justsnapd8 Member Posts: 19
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    @bailey.boo I love the wig! And you may as well have some fun with colors!

    @jlhmom75 Happy to hear you're doing well. Hopefully, they're fast with the PET results and that it's a great report. I hope you find what feels perfect for you. Hats might be fun, and colorful wigs too. I'm in Louisiana and it'll get pretty hot and humid, so thinking I'll be into scarves for a while. I hope all goes well Thursday, I'll be thinking about you.

  • jlhmom75
    jlhmom75 Member Posts: 13
    edited May 21
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    @bailey.boo That wig looks cute on you! My husband and son have reacted negatively a couple of times to ones I was trying on, which makes it even harder. Got another one that is supposed to come today to try. My son’s high school graduation is tomorrow and I want to feel comfortable!

    @justsnapd8 i haven’t tried any scarves yet, just beanies. How are you learning to tie them? YouTube?

  • justsnapd8
    justsnapd8 Member Posts: 19
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    @jlhmom75 I haven't shopped for anything yet, so I have no idea! YouTube is a great idea though.

  • jlhmom75
    jlhmom75 Member Posts: 13
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    Got a note in my online portal about my PET scan saying that it doesn't show any metastases. I'm so relieved. I know it's not guarantee of the future, but makes me more comfortable for now. I'm sure every human on the planet will have lots of findings in a PET scan, so I have a lot of questions - but they don't seem to related to cancer.

    Feeling pretty good today, but still tired. Next treatment is tomorrow. But I'm going to enjoy today - my son (my youngest) is graduating from high school tonight!

  • justsnapd8
    justsnapd8 Member Posts: 19
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    That's wonderful @jlhmom75! There's never a guarantee, but you can breathe a little easier today. Congratulations on your youngest graduating! Enjoy tonight!

  • bailey.boo
    bailey.boo Member Posts: 134
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    That’s such wonderful news about the PET scan 💕 I’m so happy you’re free and clear!

    And huge congrats on your baby’s big milestone! I hope you all have a wonderful time at the graduation. Any big celebration plans for the weekend?

  • sarahjunefox
    sarahjunefox Member Posts: 33
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    On day four after treatment, I need to go on antibiotics for a nasty old sinus infection. It's knocking me out! How is everyone doing today?

  • lyniepooh
    lyniepooh Member Posts: 5
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    @bailey.boo My 2nd and 3rd treatments were fine no reactions. My side effects haven't been too bad, some diarrhea, headaches and some nausea. Have pills for it all….lol and I'm not afraid to take them. I'm waiting for more severe side effects and hoping not to get them, of course. I bought about 6 different wigs from Temu and a few different scarves, including bandana types like I wore in the 70's….for some reason I'm wide awake tonight (had my 3rd treatment today), went to bed and probably slept about 1/2 hour then couldn't go back to sleep so I got up about 2 am and here I am. I felt great on Sunday so I was able to attend the Giants' game with a friend and we had a lot of fun. Hope you're doing well.

  • jlhmom75
    jlhmom75 Member Posts: 13
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    @bailey.boo Graduation went great (though those things are sooo boring! LOL). We are having his party on June 15th because his ceremony started at 7pm on a Wednesday. I picked the date, printed invitations and mailed them. The next week I found the lump. Timing is everything! My 3rd round of chemo is two days prior so I've enlisted my mom to "host" with my husband. I'll help as much as I can, but don't want to push myself too hard if it's a bad day.

    I wore a wig out now two times. I'm not sure that's going to be my route. They are just so hot and in my face. I have a few events I will probably wear them to, but I think hats are going to be my preference. (And bare at home likely.)

    I had chemo round 2 yesterday. Without the anxiety of the first round, it really was pretty relaxed and boring. A few new reactions to Taxol (menstrual like cramping and hot flashes that are still continuing) but overall was good.

    @lyniepooh I'm with you on the very little sleep and suspect the steroids. Glad to stop the nausea and other symptoms before they start, but the lack of sleep is definitely taking a toll! (And I had 9 days of steroids starting at day 11 because of a rash so I have only had a few days with no steroids in the last 3 weeks! Ugh!)

    @sarahjunefox Hope your sinus infection is resolving. I hate those!

    Hope everyone is feeling well!

  • bailey.boo
    bailey.boo Member Posts: 134
    edited May 24
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    Good morning and happy Friday!

    @sarahjunefox, How are you doing? I hope your infection clears fast and you feel better soon! I kept reading people say days 3 to 9 were their worst, and I found that to hold true for me on round one. 

    @lyniepooh, I’m so glad you made game day and  you’re doing well with minimal side effects! Hopefully that’s me on subsequent rounds. The diarrhea was my worst problem, but I’ve been in every day this week getting fluids and meds to help fatigue and low numbers. I feel much better now! They said they’ll give me atropine up front, on infusion day, from now on. I met with a nutritionist yesterday, and he told me about something called banatrol that may also help my diarrhea issues. I drank one enterade the other day, when it was still bad, and that did seem to help me, so that’s in my arsenal too. 

    @Jhmom, That’s awesome it went well and you have a little buffer between now and the party, and a mom and hubby to put to work! I hope chemo round 2 goes well for you ❤️

    My husband was… unhelpful my first week of chemo. As a combat vet, he has a slew of medical problems, and me being down has been an adjustment for us all. I’m usually a million directions at once, going a million miles an hour. So it all fell apart in mere days with me down. I talked to him, and he’s been stepping up and dare I say quite impressively. He also just surprised me with a Sleep Number bed, which should greatly help us both. A late anniversary gift (Old people bed for the win! Très romantique! LMAO!), as we celebrated our 25th right as I was being diagnosed. Cancer ever so rudely hijacked it.

    Today, I’m feeling like me again. I’m still taking Imodium but not popping it like candy, I’m getting some protein down, and I’m drinking coffee for the first time in what feels like forever. I may go to Busch Gardens with the fam tomorrow, but I will take it very easy.

  • amesisland715
    amesisland715 Member Posts: 6
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    Hi! I'm actually not sure how to respond to people on this thread? I also had the same symptoms as you. Fatigue hit on Saturday and then faded out day by day and now I am feeling pretty normal. I also had a ton of GI issues. I followed the BRAT diet and drank a ton of water but nothing helped. My MD finally gave me a prescription for Lomotil since the Immodium wasn't working. One dose and I'm sooo much better. The only other things that I have experienced are loss of taste and red spots on my face…. My tumor was quite large and it is ALREADY like 1/2 the size it was. It is unbelievable! Funny we are on the same schedule! Hope you are doing well?

  • bailey.boo
    bailey.boo Member Posts: 134
    edited May 24
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    Ugh. I’m so sorry to hear you experienced the same thing. It really knocks you down in mere days. Next round, we come armed with good knowledge and can hopefully get ahead of and better mitigate these things! 💪💥

    I’m going to remember that— lotimil. Maybe I can try that too. I think mine feels smaller. I had a sonogram appt for my savi scout insertions, but they just marked the current clip positions; they didn’t measure anything. 

    You can respond to someone in your post by “@ mentioning” them. Just type the @ symbol and start typing the person's username. Don't include any spaces between the @ symbol and the username. A list of users should appear you can select from. The feature is a little clunky on here. 

  • ebfitzy
    ebfitzy Member Posts: 68
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    I will be getting my port next week and starting chemo.

  • bailey.boo
    bailey.boo Member Posts: 134
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    Hi @ebfitzy I’m sorry you have to join us! For me, the procedure and port placement itself wasn’t anywhere near as bad as I worried— it was my skin allergies to the adhesives and bandaging that got me. I had some tightness for part of a day, and a little discomfort swallowing for a day or two. I hope it goes quick and smooth for you!

  • bailey.boo
    bailey.boo Member Posts: 134
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    I saw a nutritionist this week. Chatting, we discussed how I had swapped out all of my silverware for plastic, but I was drinking from Yeti and Stanley tumblers. I did not make the mental connection that these are METAL until having a conversation with someone 🤦‍♀️

    Maybe I’m not the only one! Thought I’d post it here, as it’s been a game changer for enjoying my coffee again!

  • justsnapd8
    justsnapd8 Member Posts: 19
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    @bailey.boo Thanks for the tip on the coffee! I too use a metal insulated mug and wouldn't have thought about it!

    @ebfitzy I won't start chemo until the 11th but I got my port last week. My incision was glued, so no tape. My throat was sore for a couple of days too. I'll have chemo first, then surgery, then radiation.

  • jlhmom75
    jlhmom75 Member Posts: 13
    edited May 25
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    Two days post infusion 2. Feeling mostly dizzy, drugged and tired. Had to call on call doc because my left ear is full of fluid. Not much pain and no fever. Apparently it isn’t uncommon during chemo. Recommendation was using Flonase.

    Hope everyone is feeling well.

  • justsnapd8
    justsnapd8 Member Posts: 19
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    @jlhmom75 And how is day 3 going? I hope better. Did the Flonase help?

    How's everyone else?

  • moderators
    moderators Posts: 8,187
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    We were wondering the same! How is everyone doing? Sending hugs to all!

  • sarahjunefox
    sarahjunefox Member Posts: 33
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    Morning all! Sending hugs too. I have emerged from my sinus infection after some antibiotics and am starting to feel human again but with a lingering headache, one of those nasty sickening ones. Nothing eases it. I feel like dunking my head in the sea!

  • justsnapd8
    justsnapd8 Member Posts: 19
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    @sarahjunefox Morning! I'm so glad you're feeling better. Sinus headaches are the worst! 😘

  • lyniepooh
    lyniepooh Member Posts: 5
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    Thursday, 5/23 was treatment #3….I always feel so good the day after and the about day 2-4 don't feel great…not horrible but not great!!! Diarrhea and headaches are my issues so far. This week (treatment #4) I will get herceptin along with the Taxol….so will be a longer day at the center. I don't know if anyone else has this issue but during my treatments I have to pee every 45 minutes…..ugghhhhh. All of the staff are very nice and accommodating with whatever I need. I am able to drive myself to and from which I prefer. The Cancer center is only 10 minutes from my home. For my diarrhea I take a generic anti diarrheal which can stop me up for a few days (damned if you do and damned if you don't). A friend who was having issues with diarrhea and also in treatment for kidney cancer was told by her physician to use metamucil so I'm trying that too. I appreciate all of the helpful posts by all of you as we all try to navigate these treatments.

  • ebfitzy
    ebfitzy Member Posts: 68
    edited May 27
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    what is this shot that the doctor gives a day after chemo that’s supposed to help white blood cells? She made it seem awful. Lol what kind of “pain” are we talking about? Just sore site pain, or does this cause the bone pain people mention associated with chemo? I’m just super confused and trying to understand this before I start chemo so I’m not side tracked.

  • sarahjunefox
    sarahjunefox Member Posts: 33
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    @ebfitzy I think it's Neulasta that you're thinking of. I've had one shot and it was totally manageable pain. My oncologist recommended taking Claritin from day 1 of my treatment for 7 days to help with the bone pain. It was a wee bit sore but no more than the soreness from a headcold with body ache. :)

  • ebfitzy
    ebfitzy Member Posts: 68
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    @sarahjunefox

    Thank you for the insight! I’m just trying to be as prepared as I can. How long did it take for hair loss to start? I’m not sure if I’ll just shave it at the beginning or wait until it starts falling out. If I wait will it make my head more sensitive to the cut?

  • jlhmom75
    jlhmom75 Member Posts: 13
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    I overdid it yesterday - had some family over to play board games. :( I was really hoping that staying incredibly hydrated would make this second round easier, but it hasn't helped a lot. Seems like starting day 3 or 4 for me I just need to lay low for a few days. Worst part is the dizziness! Not much sleep and lots of digestive issues too. But I still had fun with the family in between.

    The Flonase has helped some with my ear I think. It hasn't gotten any worse at least.

    @ebfitzy My experience for the hair loss: scalp started hurting about 13 days after the first infusion - like a ponytail was in too long. The next day, lots of hair falling. I ended up cutting off hair to about 5 inches or so that day because I couldn't leave it alone. Two days later, we cut it to about 2 inches, but I started to feel like Beetlejuice (hair just nuts and I felt it made me look sicker). So at about day 18 I clipped it to a guard size 1. I probably have 10% left or so. So far, no loss in my eyebrows or eyelashes that I've noticed. The pain stopped after about 4 days I think (but it was really uncomfortable for a few days!)

  • justsnapd8
    justsnapd8 Member Posts: 19
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    @ebfitzy I plan to wait until my hair starts falling. I had it cut short a few days ago so it would hopefully be easier emotionally when it's time to shave it or clip it short.. whatever they do.