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Starting chemo June 2021

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

    Well I was Er/pr 100% ugh. And I had a period last month and this one. I have had three infusions of AC so far. I’m going to ask my MO about it next time. It may just take a while and the Taxol may push it on over. I don’t know. But I’m with you I would think it would stop it quickly since chemo is strong. But maybe it builds.

  • Dicon
    Dicon Member Posts: 32
    edited July 2021
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    NEULASTA can work too well. My bloodwork showed 19 before Neulasta second round. Just before 3rd round yesterday was 30. A High normal white blood count WBC is 10. It threw a lot of related measures off as well. Neulasta spikes at 120 hours so it was way higher earlier. Researched it and found a couple of highly credentialed ONC docs who said this can happen and adjustments should be made. Also read that spikes can cause issues with the spleen.

    The ONC nurse was ready to do Neulasta again at the third round yesterday when,I told her to consult with the Onc doc who is very hard to get a hold of. ONC doc agreed with me, skip it for third round.

    Lesson learned…..What’s important is that we need to study our bloodwork and do the research. You can just Google most codes to get their meaning. Be sure to keep the word chemo in the search. If you Google WBC leaving out chemo word……a 30 WBC means leukemia or a raging infection! Will report WBC count 7/30 to see if we should have stayed on or not! We are all little science projects

  • Maura1
    Maura1 Member Posts: 12
    edited July 2021
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    Hi Monarch!

    Happy to hear your second infusion went okay. Friday will be my second infusion. I am due for my period the end of this week, but hoping not to get it! Did your MO start you on the Zoladex (goserelin) injection to stop your periods? I get one every 4 weeks, so we'll see if they work!

    It's my understanding that sometimes your flow may be heavier while undergoing chemo because your blood count levels are decreased which puts you at a higher risk of bleeding. In addition, they want to stop your periods if possible to help prevent anemia (or prevent it from getting worse) from periods.

    I know everyone's situation and care plan is different but maybe ask about the Zoladex?

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

    I had that same issue. But my MO caught it and decided to not do Nulesta the third infusion. He is always on top of things. Which I’m grateful for. We will see what I’m at next infusion. Which will be my last AC. And I won’t have the Nulesta with Taxol. Praying Taxol is easy since it’s every week. And I won’t have as much time to recover.

  • btwnstars
    btwnstars Member Posts: 81
    edited July 2021
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    My period is a few days past due, feels like maybe I will still get something, but nothing yet.

    Dicon - that is interesting about Neulasta - mine was 15 before my 2nd infusion. I will bring this up with Onc bcz I see her next time before treatment.

    I am having a hard time coming out of the post-medicine days worse than just being on the meds. I stopped taking omeprezole earlier too bcz that stuff makes me feel weird. I def have some head fog going on. It took me a few hours and lots of water to feel ok this morning.

    I am trying to decide what to do with my hair...every time I brush or try to adjust it back up I get good grabs of hair, not chunks, and it's still sort of soft coming out. I can start to feel that my scalp is tingly a bit. I may cut more today to make it shorter and see what happens. I just want to get it over with but it seems like it's taking its sweet time!

    How is sleeping going? I am sleeping ok, but when I wake up, it's like I'm done and I need to get up and be awake, can't fall back asleep. Also my lips get dried shut overnight and I need to use a washcloth to moisten them and come apart! My one eye was even dried a bit shut. It's all very strange feelings, I really don't like it.


  • monarchandthemilkweed
    monarchandthemilkweed Member Posts: 166
    edited July 2021
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    ladies, this round is hitting me sooner. I felt this way on Wednesday last time. This sucks. Can’t get out of bed. Hot. Cold. Can barely eat or drink. But I’m forcing myself. Taking my medicine round the clock. It’s helping but not enough.

    I do not get the shots to stop my periods. I think he was thinking I might need them.

    Hope I feel better tom

  • monarchandthemilkweed
    monarchandthemilkweed Member Posts: 166
    edited July 2021
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    sleeping ok. My eyes are like you describe between the stars. It’s odd

  • Dicon
    Dicon Member Posts: 32
    edited July 2021
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    lover of Jesus and btwstars re Neulasta

    Let’s compare notes on the bloodwork results without the Neulasta. My last AC is 7/30 with bloodwork 7/28. I actually feel better without the Nuelesta side effects and dropped the DEXAmethasone steroids on second infusion as I got moon face and serious brain fog. I’m still very fatigued and no appetite but with a tranquilizer and lots of water this seems a little easier. I still have Zofran (Ondansetron) disintegrating tablets and olanzapine I take at bedtime for nausea and so far that works enough to eat snacks..

    They load us up with every drug and they all have SEs that can worsen the discomfort which is why the advice of “being your own advocate”is correct.

  • Carlsoda
    Carlsoda Member Posts: 120
    edited July 2021
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    Thanks for the info Dicon on WBC and Neulasta. Just had my 3rd round and it was 17. Dang I was hoping I wouldn’t need it for the last round!!

    My third infusion was bad - started to turn the corner yesterday and managed to do a little yoga today and help cook some dinner. Basically slept Saturday, Sunday and part of Monday (between taking pills). I really don’t want the last infusion but of course I will and be back to complain how bad it was 😂


    I hope you all are doing ok and getting through it. One day at a time!

  • Jcatron243
    Jcatron243 Member Posts: 6
    edited July 2021
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    Today was my second infusion. I almost didn’t get it because my liver enzymes are high. They lowered the dosage on my Taxotere and told me no Tylenol or alcohol. My bad for having a margarita last night at dinner. Hopefully everything gets back to close to normal by my next infusion. My WBC was 16. I will be getting the Granix shots this week.

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

    I had a whopping 16 wbc. That is why I didn’t have the Neulasta. I agree I felt better without it. Not near as much tiredness. But I have not stopped steroids. I am hoping though they will cut them way back with weekly Taxol since it will be, weekly!

    Jcatron- I have had a couple, of three beers this week. I am downing water to flush. I hope my liver enzymes aren’t up. I want to get AC over with. And move on.

    Question to you guys I wonder if I can cut Taxol to like 8 instead of 12? I would rather if it would not make a difference.

  • monarchandthemilkweed
    monarchandthemilkweed Member Posts: 166
    edited July 2021
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    I can’t believe I have to do this two more times. For some reason I slept terribly last night. Slept. Then was tossing and turning from 12-5. Then back asleep. Dozing on the couch while my son watches tv. I feel so weak. I think my period is finally letting up. Trying to rest, drink water, eat protein.

  • Carlsoda
    Carlsoda Member Posts: 120
    edited July 2021
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    Lover, so with 16 WBC you didn’t need neulasta? Mine last week was 17 so maybe maybe maybe I don’t need it for my last infusion? That would be SO nice!!

    I finally went in to check my blood work results from my infusion last week and yup my liver enzymes are up too. I do drink alcohol between infusions but typically I can’t start until a week or so after when I am feeling better and always stop a few days before my infusion. No one said anything so I guess it is normal.

    Monarch - you sound like me. Last night I tossed and turned and my legs were aching too. And it’s not from exercise because even with a walk I get out of breath and heart palpitations! Oh and being hot and cold and cold and hot - what’s up with that? Never had it before and I must be in menopause by now (had an ablation in my 40’s and never had a period since!)

    I am thankful for our group because I know I’m not alone in this - we all seem to be having similar side effects.

  • Dicon
    Dicon Member Posts: 32
    edited July 2021
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    monarch, my Onc suggested Tylenol PM for sleeping issues. I didn’t think that would be strong enough but I was surprised that I slept several hours without the tossing and turning. It does take quite a while to work however. So next time I took it an hour before going to bed.

  • kotchaj
    kotchaj Member Posts: 214
    edited July 2021
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    Second AC is in the books. I have it on Tuesdays, worked Wednesday, took yesterday off because I was dragging and am back at work today. I don't want to be here at work today, I'm freaking tired, but have an appointment with my regular doctor at 2:45 today so will be a short day and I have the weekend off. I'm curious to see if my energy comes back after this one. Last time I was feeling pretty darn good going into the weekend before my next chemo. I hope that continues. That means next week will be better. I'm okay with that because I need the energy to go into the next one.

    I ended up buzzing my hair, or my husband did, last Sunday. On our way back from a baseball game, it was coming out in clumps so it went bye-bye. Now, the fuzz we left is also leaving, but it's not as traumatic as seeing the longer strands go. Wearing my wig. I named her Louise. Am I the only weirdo that's named their wigs?

  • monarchandthemilkweed
    monarchandthemilkweed Member Posts: 166
    edited July 2021
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    KotchAJ- I named my wig Sally Faith!! That is the name of my cabbage patch kid from childhood. She had the corn silk hair. Well my name is Sarah and Sally is a derivative of Sarah and on this journey you gotta have Faith. So I thought Sally Faith was perfect

    I feel so lucky as preschool teacher I don’t work in the summers. I had chemo Monday. By lunch time Tuesday I was tired. Wednesday I couldn’t have worked at all . Thursday morning I was still very weak but was doing more around the house and with the kids. Today i feel so much better but still a little weak. Feeling better is amazing. Amazing.

  • loverofjesus
    loverofjesus Member Posts: 174
    edited July 2021
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    Do you guys have any clue how much you all make me smile?? I woke this morning ok. By afternoon I was having my very own pity party.

    So thankful for you all!!! I need to name my wig. Hey, do you guys want to help me??? I don’t think hay hair is appropriate. 😂.

    You guys make me some suggestions. I up for any of it. I just need a break from being on my pity pot!

    Love and hugs to all!!!

  • btwnstars
    btwnstars Member Posts: 81
    edited July 2021
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    Ok, this should work good for my next round bcz it is on Thursday 7/29, and I see my onco that same day. The way they scheduled it, I will go to infusion to have my blood taken, then go for appt so bloodwork can be done while I'm away, then go back and be ready for infusion. So that should give me a perfect time to discuss the results and figure out next steps. I will do anything to remove more medications as I am convinced the part about getting over the meds is worse for me. This after affects of 2nd round were def more limiting, whereas the first one I felt pretty ok after a week, I am a week and a day this time and really just getting over the icky feeling.

    I have no idea about liver enzymes, but I will ask. I have not had any alcohol since before my diagnosis. I was never a big drinker, tho I do enjoy a beer, esp a draft, but I really don't miss it. I don't really know that I will even go back to it that much, maybe a handful of times a year?!

    The steroid was explained to me that it helps prolong the emend in the premeds, which is the key anti-nausea drug they give. I never knew that until the nurse said that, I always thought it was to help reduce infection, which may be also.

    LoJ - I am dose dense for my Taxol round. They told me they sometimes give it to older ladies over the 12 weeks, but I guess bcz I am younger they are doing it over 8 weeks, 4 doses. Same as now, every other week. I keep hearing how that is easier and I am fully expecting it to be worse bcz I feel like that's how things go!

    No period yet, doesn't seem like it is coming now. I was feeling hot in my ears, is that a hot flash?

    Hair is gone. It was falling out like mad, SO was helping me shave it, but honestly he wasn't that good. I did it myself leaving it a little long on top, then had my Mom finish it off yesterday after we picked up wigs. Wigs are Moira and Alexis fittingly! I like them, but honestly will prob wear a handful of times. I may consider wearing them as my hair grows back at work just to avoid stares.

    KotchAJ - god bless you for working during this! I am so thankful to be able to work remotely, esp this week, I snuck in little cat naps here and there.

    Monarch - the compazine knocks me out when I take it. Ativan also can help with sleep and is a little less strong I think.

    I learned a hard lesson by not taking a softener with the Zofran, def will take it along with it next time. My diet has been all over the place and not necessarily healthy. I am def craving more carbs, breads and pasta. It's all just a whim, not much planning going into it. And I am someone who always drank water, but bleh, plain water is getting old. I've been adding in coconut water which is the only thing that really feels like it hydrates.

    Keep going, we got this!

  • mle42
    mle42 Member Posts: 124
    edited July 2021
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    Hi all, I feel like I am emerging from a cave, back to the land of the living. Loopy

    I will not lie - AC cycle 3 kicked my ass. Awful nausea and vomiting starting the evening of the infusion. Could hardly eat, drink, or move for a few days. And of course being over the weekend I had to play phone tag with the on-call staff to try to get different meds. Now at day 7, feeling pretty good, I just realized today was the first day I wasn’t watching the clock tick by until I was allowed to take another zofran! Thankfully my Dr has now set up a plan with different meds for cycle 4, so I am hopeful it goes better.

    Anyway, finally catching up here. You awesome ladies inspire me, everyone just showing up and doing what needs to be done! Love the wig pictures, you all are beautiful! I wasn’t sure about the wig thing but finally caved and ordered one - my insurance covers the cost, so thought I might as well, and can donate it if I hate it. It supposedly arrives next week, right about the time my pink faux-hawk will probably be too thin to pull off.

  • Carlsoda
    Carlsoda Member Posts: 120
    edited July 2021
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    mle42 - I am so sorry! I had lots of issues last time and the nurse recommended ensure clear. I got the mixed berry flavor and although it didn’t taste so great (thanks chemo), I think it helped me get over my last round. Seems like after every infusion we need to do something different to help us feel better! I am thankful we all seem to have great medical teams on our side helping us navigate through the difficult time!

    Ok I have now named my wig Stella - this is after my grandma who passed away from breast cancer before I was born. She’s with me on this journey!

    Have a great weekend!!!

  • mle42
    mle42 Member Posts: 124
    edited July 2021
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    Carlsoda, I’m picturing you calling for your wig “Stelllllaaaaaaa!” Streetcar Named Desire style. But maybe not if you’re thinking of your Grandma. ;)

    Yup, each cycle needs something different. Drinks that tasted great one week are gross the next. Just thankful that I’ve always been able to find SOMETHING that still tastes good! Looking forward to my “good” week ahead and the the last AC infusion!

  • loverofjesus
    loverofjesus Member Posts: 174
    edited July 2021
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    Hello everyone let’s name my wig. I need something to lift my spirits today!

    And go!

  • castigame
    castigame Member Posts: 336
    edited July 2021
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    Just peeking. You ladies are my inspirations whenever I need motivations. Really glad Neulasta works well and even though I am no doctor if WBCs are in mid teens, I hope your oncos let you skip one time at least. I swear Neulasta kicked my butt 8 times. I begged and pled to let me skip one no success because my WBC only went up to low teens.

    Secondly, ladies bloodwork numbers are likely be off the charts period. For example, DEXA(the steroid thing) caused my glucose to be 260. ALK phosphate went up to 150. Yes you should watch and put some efforts to lower numbers but none can be done during chemo. I am 4 yrs PFC. My numbers are pre chemo range finally. Some are even better. Plenty of water really helps.

    Lastly, I know it is a big bleep for you ladies but you should and will pass all the bleeps.

    Wish the bleeping chemo train ends as soon as possible.

  • monarchandthemilkweed
    monarchandthemilkweed Member Posts: 166
    edited July 2021
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    castigame, hi! That’s so helpful! My glucose spiked too. Was gonna ask! But that makes sense now! Thanks for chiming in

  • ClareMabry
    ClareMabry Member Posts: 1
    edited July 2021
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    I started chemo in June! How are you doing?

  • kotchaj
    kotchaj Member Posts: 214
    edited July 2021
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    image

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    You definitely need to name your wig! I actually bought two...yeah, didn't need to, but hey:-) I have Louise the Librarian, shorter, closer to my old hair. I am not a librarian, but it went with Louise for some reason in my mind. Then I have Lola, the showgirl, lol. Lola has my dream hair. Longer, fuller, thicker, and not as curly as my natural hair. Plus, zero frizz! I didn't wear either of them to work today. As one of my bosses said, I have my Hell's Angel's look going on, which is a scarf tied around my head because it's too darned hot for a wig today!


  • loverofjesus
    loverofjesus Member Posts: 174
    edited July 2021
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    Hey everyone!

    Kotchaj, I love your wigs!!! They look great on you! I ordered 3. I don’t know why I just did. We will see how it goes. Two of them have not come in yet.

    I still need to name mine.

    I have my 4th AC infusion tomorrow. Then I’ll be done with it snd begin Taxol after that. I’m so ready to be done!


  • moderators
    moderators Posts: 8,287
    edited July 2021
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    Hi All, in case you are interested:

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

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

    Register in advance for this meeting

    After registering, you will receive a confirmation email containing information about joining the meeting.

  • loverofjesus
    loverofjesus Member Posts: 174
    edited July 2021
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    Ok you guys sooooo maybe not getting Neulasta last time because of white counts being elevated was not such a great idea. My white count fell below normal range. (Only by 2 Points ) and they would not let me get chemo today. They are making me put it off for a week. Ugh. So everything gets thrown off a week. They want my counts to rebound. So next time we will do the Neulasta.

    So now i wish I had it last week.

    So frustrating!!!

  • mle42
    mle42 Member Posts: 124
    edited July 2021
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    KotchAJ - wooohoo you are rockin' it! Both wigs and sans-wig. =)

    LoverofJesus - aww, that sucks. can only imagine how frustrating it must be to get the schedule pushed back!