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Starting chemo June 2021

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  • hangryflower
    hangryflower Member Posts: 12
    edited June 2021
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    Hi again, I am enjoying hearing about everyone's experiences.

    I am 8 days out from my infusion and still have nausea and diarrhea... Does anyone have an idea how long this should last? I have an appt Friday and will ask then, just "surveying the crowd" 🤓

    Hello Carlsoda! I can't help but wonder if you're close to the twin cities or not. I chose my clinic based on proximity to my home in Anoka county, but wonder if I should've shopped around. How did everyone else find their Onc?

    Mle42 -- I am also 40 and struggling with this change in my identity as a go-getting healthy person to someone who is reserving energy for this big fight. I am also a knitter and am scared about permanent neuropathy. Cancer is already going to take a lot from me, I would hate to lose my creative outlets.

    I feel like I just dumped out a lot of fears to you all, hopefully it's not burdensome. Much love to everyone.


  • Carlsoda
    Carlsoda Member Posts: 120
    edited June 2021
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    Hi Hangry - it took me about a week to finally start feeling better and of course now I feel great and I start steroids today for infusion tomorrow - at least after tomorrow I will be half way done! I live just west of the cities and I choose Minnesota Oncology- they are also teamed up with Mayo Clinic! But honestly being in Minnesota we really have top notch health care between Mayo and the U. Good luck with your appt on Friday - when I had my follow up appt after my first infusion they had a lot of good ideas to try this time. I think our first infusion is more of an experiment since everyone has different reactions.

  • SRL
    SRL Member Posts: 6
    edited June 2021
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    Today is my 1st infusion. Thanks for sharing, it makes this a little less scary

  • loverofjesus
    loverofjesus Member Posts: 174
    edited June 2021
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    SRL,

    So sorry you find yourself here. But I will be praying for you. They put long term anti nausea meds and steroids in my infusion. And honestly I felt pretty good except one day and I was very tired. And I think that was more steroid than chemo.
    Praying for you today.

  • moderators
    moderators Posts: 8,287
    edited June 2021
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    SRL and Hangryflower, welcome to BC.org! We're so sorry you have to be here, but we hope you find this to be a helpful and encouraging place! Please, come back to let us all know how you're doing.

    Best,

    The Mods

  • hangryflower
    hangryflower Member Posts: 12
    edited June 2021
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    SRL - How'd it go today?


    Sending healing thoughts to you all!

  • monarchandthemilkweed
    monarchandthemilkweed Member Posts: 166
    edited June 2021
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    my first infusion is Monday. I still can’t believe this is happening. I think because all of my drs thought I wouldn’t need chemo.

    I just got back from camping with my kids. It was a lot of fun! We’re supposed to go camping again with my husband and kids July 6. That’s 8 days after my first infusion. I just don’t know if we should go! Any thoughts?

  • Carlsoda
    Carlsoda Member Posts: 120
    edited June 2021
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    Hi SRL - hope it went well yesterday. One day at a time and we will get through this!

    Monarch - I am sure you will be fine to go camping. Take it easy and keep up on the anti nausea meds and any other meds for other side effects. I was pretty constipated last time but we have a game play for this round!

    Off for infusion #2 in a few hours. I am counting them down!!

    Hugs to everyone!!

  • SRL
    SRL Member Posts: 6
    edited June 2021
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    Went well yesterday. My nurse was so helpful, caring, and supportive. Went through as the meds with us so I felt prepared at home. In the middle of the night I rolled over and was dizzy, got up drank water, ate a cracker, took Zofran and back to bed until 8. Felt great when I got up. Disappointed that my coffee tastes toobitter to drink this AM. Oh well

  • mle42
    mle42 Member Posts: 124
    edited June 2021
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    @Dicon and @LoverofJesus, thanks for the notes. I did turn a corner with the fatigue after a few days - not gone, but not crushing anymore. Will try the salt bath next round - the incision from my port has still been healing so while I can shower I was told not to soak yet. Today is a trial run to see if I still need the anti-nausea meds 6 days post infusion. So far..... I'm a little queasy but not overwhelming. Makes me feel like I'm making progress not to be totally chained to the drawer full of prescription bottles! We can do this!

  • mle42
    mle42 Member Posts: 124
    edited June 2021
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    Monarch, you may be good to go camping as long as the family pampers you and does the heavy lifting. 8 days out from infusion.... sitting in a lounge chair under the trees sounds like a great treat to look forward to!

    Carlsoda, good luck today!!!

  • btwnstars
    btwnstars Member Posts: 81
    edited June 2021
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    Port was in this morning, lots of bruising but feel ok bcz my surgeon is a big believer in local anesthetic! I am a little bummed my chemo day was moved to Thursday. I hope I will b able to recover by Monday but if not I will just make that an additional day off. I guess I have to adjust in my head what a weekend is for for the next couple months.

    Monarch - I will b sending you +++ vibes Monday & hoping for the best so you can go on your camp trip. You got this!

    Mle42 & Hangry - I am same as far as worrying about level of activity and learning to slow down. I def did learn my lesson a bit post surgery but sheesh. It is hard. I keep learning about how normal aging, hormone drugs and chemo cause muscle loss but then bcz of surgery and port have to take it easy, then obvi fatigue from chemo. It’s all very unfair! My plan is to try to work with a trainer who has experience with this once I am thru treatment. But yes, the mental battle is hard! Btw I am 38 (for 2 more weeks ;) )

    Thank you all for your tips and sharing, it is priceless.

  • monarchandthemilkweed
    monarchandthemilkweed Member Posts: 166
    edited June 2021
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    Btwnthestars, I thought I was young with breast cancer. I just turned 45. But 38! Ugh. I hope this is our only battle with cancer.

    I did get to camping this week. But had to come home early because my youngest got croup. A friend took me to lunch and that helped take my mind off of chemo. I start the steroids on Sunday. Hoping for a nice weekend.

  • Carlsoda
    Carlsoda Member Posts: 120
    edited June 2021
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    Monarch- good luck on Monday! This is your first infusion right? We are both on the same drugs so if you have any questions just reach out!

    BTWNSTARS- sorry it was pushed out. Personally it would bother me since I am such a planned and when something gets changed it really does bug me.

    I had my 2nd infusion on Thursday - went well. Anti nausea meds are working fine and just had to take a break at work yesterday for a nap. Luckily I work from home and my manager said I could anytime! Back off coffee again - but at least black tea tastes good! Hair is almost gone which even though mentally I was ready for it emotionally not. BUT I still have eyebrows and eye lashes - hope most of them stay!

    Sending everyone hugs and hope you all have a great weekend! Try to find something fun to do!

  • hangryflower
    hangryflower Member Posts: 12
    edited June 2021
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    Congrats on your second infusion, Carlsoda. One step closer to the finish line ThumbsUp

  • monarchandthemilkweed
    monarchandthemilkweed Member Posts: 166
    edited June 2021
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    carlsoda, I’m kinda jealous you have two infusions completed already! First one is tomorrow I’m nervous and anxious!

    Do any of you have to take steroids prior to your infusion? Did you have any side effects?

  • loverofjesus
    loverofjesus Member Posts: 174
    edited June 2021
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    Hi Monarch,

    Try not to be too anxious. My first infusion was nothing like I expected and I felt really okay after. Except for the steroids which they give in the infusion just prior to chemo.

    I don’t know how your place does it. But I go to a Cancer institute, but they give me some meds in the infusion. Two longer term nausea meds, and steroids! They also do a Nulesta patch after so that my white count doesn’t drop. They obviously did their job though because I felt good. On like the third day when the steroids wore off I was tired for like a day and a half. Not terrible. Just no energy. So I took an epsom salt bath to detox, and upped my water intake by a lot and I recovered my energy fairly quick. I also went to bed early a couple of nights in a row. Just to get more rest. My second infusion will be this week. My Dr said most of the time what happens the first time will be what happens the next time too. If they don’t give the nausea meds with the infusion. I would take them as directed for a few days after just to ward off nausea. You can handle tiredness if you’re like me. It would be the nausea that would get me.

    Best of luck to you. Praying for you


  • Carlsoda
    Carlsoda Member Posts: 120
    edited June 2021
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    Monarch - yes I start one day before, the day of and the day after. No side effects that I have noticed! I think it keeps fluid from building in your body so you go to the bathroom lots. Oh and if you share a bathroom - close the seat and flush twice for the first 24 hours!

    Good luck tomorrow! Bring some reading material or your phone and watch some shows - that’s what I do!

  • hangryflower
    hangryflower Member Posts: 12
    edited June 2021
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    I've always been a shedder, but today 2 huge clumps of hair came out after my shower... Another dose of reality. This is really happening.

    Now I'm wondering if it's time to get a much shorter cut (my hair is ironically the longest it's been as an adult, I haven't had a cut since the pandemic started.). How many of you did that vs buzzing it all off right away?



  • moderators
    moderators Posts: 8,287
    edited June 2021
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    Thinking of you All!

  • monarchandthemilkweed
    monarchandthemilkweed Member Posts: 166
    edited June 2021
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    hangryflowwer, I had my hair cut a week ago in prep for losing it. I’ve had very long hair for years. My sister was diagnosed with ovarian cancer in the fall of last year. We both cut our hair together in prep for her chemo. My hair was almost all grown in-like a Bob. So I had it cut again.
    How long ago did you start chemo

  • Carlsoda
    Carlsoda Member Posts: 120
    edited June 2021
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    hangry - that’s the stage when I cut my hair. Majority of it fell out the following week. I still have a little left but not much. I also had long hair so it was sad to see it go - but I will get it back again in a few years!

  • txlorelei
    txlorelei Member Posts: 69
    edited June 2021
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    I went straight from armpit length to buzz cut 2 weeks ago. The stylist gave me what was left of my ponytail to take home. No idea what I'll do with it.

    My hair is still falling out gradually all over rather than in chunks. I startled myself last night when I saw the bathroom lights reflect off my scalp in the mirror.

  • hangryflower
    hangryflower Member Posts: 12
    edited June 2021
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    Monarchandthemilkweed - I had my first infusion on June 15th, so I am just about at the two week mark.


    TXLorelei- interesting that you mention it, I am starting to wonder if I should take care keep my hair when I cut it off. I've seen a couple of places that will make wigs with your hair (in case the hairless is permanent, or if there's thinning). I figure Murphy's law and all thatLoopy I hope you are right Carlsoda, that even this part of treatment will be temporary.



  • mle42
    mle42 Member Posts: 124
    edited June 2021
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    I've had super long hair all my adult life. Got a bob/chin length cut last week, thinking it would be less distressing when it starts to fall out. I'm guessing I have another week or two before I start to lose it, at which point, I guess I get the hubby to give me a buzz cut?? I worry I'm going to look very alien to myself, but hate wigs. However... really looking forward to not having super hairy legs for the first time ever!

    Happy to report that 10 days post first infusion (AC), I feel almost normal, haven't needed antinausea meds for a couple days. Makes me feel like this is do-able, and knowing I have a "good" week to look forward to will make the "bad" week easier to get through.

  • monarchandthemilkweed
    monarchandthemilkweed Member Posts: 166
    edited June 2021
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    mle42- so good to hear. I know what you mean about wigs. I’m getting one mostly so I don’t upset or disrupt the preschoolers I work with. I imagine around home I’ll just wear caps or just be bald.

    I had my first infusion today. It went well. I got the nuelasta patch today. I actually don’t know what to do with myself. I feel tired but wired. I think from the steroids. I have been up since 4:30. My appointment was at 8. So long day. A walk would be nice but it’s like 90 some degrees out. Yuck

  • mle42
    mle42 Member Posts: 124
    edited June 2021
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    Monarch - congrats on getting the first one done and dusted!!

    I know what you mean about tired+wired. Thought I was coasting through the infusion on adrenaline until I remembered they put steroids in my pre-infusion meds. Though I didn't have to worry about what to do with myself the rest of that first day - even though my first appt was at 9am, I didn't get out of there until 3:30, and then had a 4 hour drive home. Didn't help that we had to stop every hour for me to pee, I was taking that "DRINK LOTS OF WATER" mandate seriously! Loopy

  • btwnstars
    btwnstars Member Posts: 81
    edited June 2021
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    Wow, you all sound like you are doing so well, very encouraging! I just realized I should technically be in the July chemo group, but I am staying here. Same, have had long hair, cut it about shoulder length before surgery. My plan is just to chop it then buzz when it starts to fall out. I won't have to go anywhere around that timeframe. I am kind of looking forward to playing around with various styles as I cut it! A tip from the wig store I visited said to make sure if you buzz still use a guard and keep a bit of fuzz. If you shave it all way down, there is chance of infection, I guess from cuts and all that.

    Monarch - I am glad you are 1 down! I ended up going to a wig store over the weekend and they were so nice and helpful. I just felt I would rather have something than not depending on where I go, as to not draw attention to my head. If I wear it a handful of times that will prob be it, but I am thinking if my hair has trouble growing back in at least I will have a solution.

    mle42 - glad to hear about your experience with AC, I hope I can handle it!

    Carlsoda - the shared bathroom tip, is that just for sanitation reasons? I know I read something about somewhere else, just can't remember. I am gonna drive myself crazy trying to avoid bacteria. lol.

    Are you all doing anything as far as mints, candy during the infusion? I keep reading about the metallic taste and things like that.

  • Carlsoda
    Carlsoda Member Posts: 120
    edited June 2021
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    Btwnstars - it’s to protect your loved ones from the chemo. Nurse said just 24 hours but I go a little longer to be safe.

    Monarch - yay first is done! 3 more for you?

    MLE42 - good job drinking water and glad you are feeling like normal now!

    I had such a bad migraine yesterday (don’t have them often) and woke up at 3:00 am with everything aching - last time doc said it was the taxatere so I took Tylenol and it helped a bit and then I took my mega dose of Advil in the morning with breakfast and it helped a lot! I will take another mega dose with supper tonight. However I don’t feel too too bad, just living off simple carbs and that sure helps with tummy and energy level. I just keep reminding myself I am half way done!

    One day at a time and we will get through this!!

  • loverofjesus
    loverofjesus Member Posts: 174
    edited June 2021
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    Hello everyone!

    I go for my second infusion tomorrow. Praying it goes as well I feel like I felt with the first. I really didn’t have side effects except when the steroids wore off I needed more rest for a day but other than that I have felt fairly good. (Well as good as you can on chemo not normal but not sick so to me that is a plus)

    I am trying to enjoy my Summer. Been by the pool some and playing with my grands and I still have two teens at home so trying to enjoy every moment.

    Not going to lie when I dropped my 14 yr old off at youth camp today she cried ( not because she didn’t want to go) but because this is the first time she has been away from me since my diagnosis. Sometimes I guess we forget our family is effected by all of this too. She will be fine there and will have fun. But say a few prayers for her if you are a believer in Jesus.

    I’ll let everyone know how I do after next infusion. Not looking forward to losing my hair at ALL! I cannot bring myself to cut it yet. I know the reasoning behind it. I just can’t do it.

    I have wigs ready. Just wish I would be in that small % that doesn’t lose their hair. (I know wishful thinking).
    thankful for you all! Hope you all have a peaceful, weeks!!