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Starting Chemo May 2019

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  • Alicesneed
    Alicesneed Member Posts: 78
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    welcome MountainMia - sorry you have to join the crowd but we are all here for support!

    Glad to hear things are going fairly smoothly happyanyway

    I’m one hour until finish of first treatment! All good so far.

    Pre-meds included Benadryl, two nausea meds and 12 more mg of steroids! These were given via IV before targeted treatment then chemo.

    I have a port so I was struggling with what top to wear (silly probably) but just a morning of decision. I ended up wearing a tank with hoodie then I wore comfy pants and sandals. I brought a pair of comfy socks and a blanket. Glad to have both. I will be here for a total of 6 hours. I am solo - although i had friends and family offer to sit with me. I brought iPad and have been enjoying surfing the web, catching up with reading and listening to music. I’m pretty wiped out right now due to benedryl and lack of sleep last night. I still think I’ll push for a small walk when I get home - tired of sitting so long!

    Anyway - thought I would give you a play-by-play for first day to see if it sparks any questions.

    Suzygreenburg - did chemo school go okay? Did you pass with flying colors?

    Hope everyone is doing well

  • lacombattante
    lacombattante Member Posts: 151
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    Hi May 2019 fighters!

    Joining the group - I just had my first EC (epirubicin, cytoxan) today, I will have four dose-dense EC, followed by 12 weekly taxol and then by radiation.

    So far side effects have been minimal, light headache and a bit of mouth tenderness, which seems to be manageable with soda bicarbonate mouthwash prescribed by my oncologist. So far so good and when side effects hit, amid they will... I will do my best to take it one day at a time

    Warmest wishes from Europe!

  • HappyAnyway
    HappyAnyway Member Posts: 380
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    Hi LaCombattante! Love your name.

    I hope those of you that were treated today are feeling as well as possible.


  • MarthaMW
    MarthaMW Member Posts: 10
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    I had my first of 6 rounds of TC today. They started me on the "normal" pre-meds, which was steroids and Benadryl. They told me to let them know if I felt anything out of the ordinary. I had brought a baby blanket to crochet and was thinking to myself "I've got this" and then boy did it hit me fast. I had a "hyper-reaction" to the Taxotere, which was very scary. They immediately stopped it and took vitals (BP & pulse way high and blood oxygen low), so they pushed more Benadryl and steroids and fluids. It took me about an hour to recover from that. They offered Ativan to take the edge off, which I accepted, and then "re-challenged" me with the Taxotere at half the speed. I did fine, and took the Cytoxan fine as well.

    The infusion nurses are great. They provided me with a book of information, symptoms, etc. to look for after leaving. I'm a bit woozy tonight and maybe feeling a little nausea (so took the meds they provided already). My oncologist told me that day 1 and 2 are normally "ok", but it hits you day 3-5. Anxious to see how this goes with me.

    It is very helpful to read everyone's posts and to feel like we are in this together.

  • MarthaMW
    MarthaMW Member Posts: 10
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    VeeBee, I meet with my oncologist the day before each infusion. I don't know if this is just the group I go to or standard. He and his nurse were able to answer most or all of my questions, but I will say the actual infusion nurses are great. Mine had a binder of information and highlighted key information. They called in prescriptions to my pharmacy before my first infusion; I take steroids twice a day the day prior and the day after infusion. They also included medicine for nausea.

    I have read to hydrate well the days before, wear comfortable clothes, and bring snacks, reading, etc.

    Good luck. We are all in this together!

  • HappyAnyway
    HappyAnyway Member Posts: 380
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    MarthaMW, I'm sorry that you had a hyper-reaction to the Taxotere. Thank goodness for the nurses that take care of us.

    I always find it interesting to hear what the doctors and nurses say about SE and when they usually occur. I enjoy the helpful tips from everyone.

    I hope everyone has a restful evening.

  • April0315
    April0315 Member Posts: 167
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    joining in on the fun as well!

    Met with oncologist today. I start May 13th. 4 rounds of AC then weekly Taxol for 12 weeks. Pet scan and port placement next week. He wanted me to start next week but my youngest is graduating HS that week and he agreed to let me wait.

    Not looking forward to it, but I’ll do what I need to.

    Looking forward to learning from each other along the way.

  • mpv459
    mpv459 Member Posts: 83
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    Got my port... Ready to rock and roll on Friday. Ugh

  • VeeBee
    VeeBee Member Posts: 30
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    MarthaMW, Yes I meet with my Onco through Teleview. I don't have to travel the hour that it take to go to the cancer center as my Home Hospital has a little ward for it, so I meet with my Onco through Technology, isn't it great lol Kepping you in my thoughts as we go through this fight together!
    mpv459 YAY!!! Port in and ready to go! I get Mine May 15th just before my Second Treatment. I have small veins so i'm not sure how tomorrow will go for vein injection, we shall see. Honestly this Port was not even mentioned to me as an option, I only knew about it from this site so I was the one who asked my Onco who called my surgeon to book me. There is alot I have learned from this site and Facebook groups that I would have been clueless on. They say to ask questions, but if you have never gone through it or watched a family member go through it how would you know what questions to ask. Thank Goodness for the Internet and sites like this one!!
  • VeeBee
    VeeBee Member Posts: 30
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    Congratulations April0315 on your sons Graduating! You must be so proud.

  • Alicesneed
    Alicesneed Member Posts: 78
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    What is everyone doing about hair loss? Wigs/no wig - wait and see? I'm thinking about doing a halo since I hear the wigs are so hot during summer. Chemodivas in Tampa does halo with your own hair - in about a week. I made the mistake of cutting mine before BMX so not sure if I will have enough but may give it a shot. I just don't know when I should make the move. Wait until head tingles or just get it over with this weekend! Ugh - the hair loss is weighing heavy on me.

  • MarthaMW
    MarthaMW Member Posts: 10
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    I had my first treatment yesterday and am getting my hair cut into a short pixie today. I plan on using soft beanies, caps and scarves. It’s really hot where I am and I don’t want a wig.

    I read to wear the soft beanie to sleep in because you will wake up with hair all over your pillow and it’s frightening. That way it’s contained in your beanie (maybe a little less frightening, but definitely easier to contain the mess).

  • VeeBee
    VeeBee Member Posts: 30
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    Its weighing heavy on me too girl!

    About 2 weeks ago I cut mine almost into a Pixie so everyone can get use to my hair short or gone. I have 6 Kids(2 Step) and they needed to get use to Mommy having shorter hair. We play around with different head scarves so they see what I will look like and its not a shock to them. Ages 18 all the way to 5.

    I don't plan on wigs as during the Summer its HOT here...yes Canada gets hot lol (just teasing) and I have fears that the wig falls off or i don't put it on right...lol

    I am not Buzzing it until it starts to bother me and or falls out. For some weird reason I need to go through that Process and understand it, then take control of it. I'm weird like that lol

  • mountainmia
    mountainmia Member Posts: 857
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    Hair -- yes. I like my hair and I'm not eager to lose it. I'm 58 and my hair is still naturally brown, aside from some weird random grey things, few enough I can still pick most of them out individually. It's long and straight.

    But it's really hard for me to imagine I'd like to fuss with a wig. The thought of it makes me itchy and uncomfortable. I expect I'll go with hats and scarves instead.

    I might get my hair cut very short before it comes out. I've had it that way before but not for many many years.

    As to buzzing mine off, I might see my son later this month when he has a few days of training at an Air Force base only 300 miles from here. (That is close enough that Son would ask us to drive to have dinner with him. And probably we would.) I have a sort of fantasy that Son could buzz my head for me, since he does his own every week. But I also don't want to upset him. AND I don't really know if the timing would work. Could be it'll be perfect, since my first chemo is 5/10. But I don't know what days he'll be within shouting distance.

    As you can tell, I really don't know how I'll handle this. With at least a few tears, I expect.

  • mountainmia
    mountainmia Member Posts: 857
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    Now that my chemo plan is made, I'm starting to tell more people about all of this. It is weird and uncomfortable in many ways.

  • HappyAnyway
    HappyAnyway Member Posts: 380
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    mpv459, what do you think about your new body mod? I got mine two weeks ago today. I'm pretty much used to it now. I was certainly happy to have it for my treatment.

    MountainMia, my 18 yo daughter buzzed mine. It was a very nice experience.

    Overall, I don't mind having my hair this short. I am a little sensitive to the wind blowing through it. It sort of tickles sometimes. The biggest downside is that my "what the heck" lines cannot be hidden!

    I am not looking forward to being shiny bald. It's my new phrase. That and angry lump.

    I will wear hats and possibly scarves to protect my skin. I don't forsee myself wearing them otherwise (unless it's to help those around me to feel more comfortable).

    MountainMia, my second treatment is on May 10. Will yours be every two weeks to start?


  • annie60
    annie60 Member Posts: 295
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    Ladies - an easy and light head covering can be made from a T-Shirt. Youtube, Pinterest or google chemo head covering T-shirt. You cut the T-shirt under the sleeves and it makes the neatest head covering. I bought a variety of colors from Wal Mart for under 3 dollars. The XL makes a good wrap. The shirts are thin enough to be cool but provide good coverage. You can add a bandanna or band to jazz it up. My husband bought me a silk pillow case. It has been such a blessing. It's cool when I am hot flashing, smooth on my head when it was sore.

    When my hair started coming out, my DH buzzed my hair. It was like taking control of something in this out of control situation we are in. Yes, it was traumatic and yes there were tears. But once it was done, I was able to move on. I still don't look in the mirror much. I don't wear anything on my head at home and finally got the courage to not wear anything around my daughter, son in law and granddaughters. When it grows back, my granddaughters are going to color it pink and purple! My seven year old was a little bother by my bald head at first, my four year old told me I needed a headband and got me one. I even got a tiara.

    I also watched a lot of videos on how to apply make up without eyelashes or brows. I am not a makeup person but it has really helped me to feel better about myself. Dangling earrings look great!

    Hang in there. Even though it doesn't feel like it now, this will pass.

    Annie



  • April0315
    April0315 Member Posts: 167
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    oh the hair... yes, I'm very uncertain as to how I will handle that. Mine is very long and thick and I can't imagine NOT having it. I figure I'll wait for it to start to fall out, when it gets bad I'll cut it short and slap on a head cover. I briefly toyed with the idea of cool cap, but for many reasons I have decided I'm not up for the extra fuss.

    I am planning on getting a wig that looks similar to what I have for work. I am a nurse in a busy hospital and I don't need patients worrying about me! I've been reading up on hair covers and I have a good friend that is a BS survivor of 10 yrs I'm hoping to recruit with this process. I"m sure some are more comfortable than others.

    Can we swim with the port? I'm thinking not but I really don't know.



  • HappyAnyway
    HappyAnyway Member Posts: 380
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    April0315, my port is completely embedded in my body. I wasn't told not to swim, but I will ask my MO on Friday when I see him.

  • lacombattante
    lacombattante Member Posts: 151
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    Hair thing... MountainMia, we seem to be two of a kind: 58 year old, naturally brown, no gray in sight. I plan to buzz mine next week, in the same place where I ordered my wig; comes as a part of their service package. In the meantime, I ordered a bunch of scarfs and hats, don't think that I will wear wig too often, esp during summer.

    April0315, I was told that swimming with the port is possible once it fully heals (2.5 - 3 weeks). However, my oncologist advice is to avoid crowds / public swimming pools.

    My learnings from day 2: Emend is better be taken before morning coffee...exactly as my chemo nurse advised, I should have listen! :) Steroids high is called 'high' for a reason: I have been frantically active all day.

    I am getting my first Neulasta tomorrow, we'll see how it goes.





  • Alicesneed
    Alicesneed Member Posts: 78
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    I was told swimming is possible with port once healed. I have been in pool and hot tub since having it put in.

    MountainMia - I had struggles at times telling people. It was awkward at first probably because it was so incredibly unreal. I got to a point where I just wanted to get it out so once I told my immediate family I told friends and told them to share away. Then I got on the phone and called a few key people that I didn’t want to hear from the grapevine. I just blurted it out and let the conversation roll. Most have been very supportive but I did have to tell a few that a particular story was not helpful at the time. They understood. (And believe me when I say I’m not good at minor confrontation but we have to learn to know what is good for us)

    My MO said don’t waist money on cold cap it won’t work. In the end the hair loss won’t be as big of deal (of course she’s not loosing hers!

  • HappyAnyway
    HappyAnyway Member Posts: 380
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    Alicesneed, "My MO said don't waist money on cold cap it won't work. In the end the hair loss won't be as big of deal (of course she's not loosing hers!"

    Best thing I've seen all day!

  • April0315
    April0315 Member Posts: 167
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    thanks for the feedback on swimming. We put our first pool in last fall and this is my first season to use it. Since my bilateral lumpectomy with lift, I am still 2 weeks out of being cleared to swim, so looks like a little longer than that now, but at least there’s hope of enjoying it eventually.

    I have a PET scan tomorrow and MUGA scan on Friday, port placement the 9th. I had a few good cries but I’m moving forward

  • mountainmia
    mountainmia Member Posts: 857
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    People say really dumb things while they're trying to be kind, don't they? Makes me wonder what dumb things I've said to other people, in similar situations of grief, crisis, or illness. Hoping I can be better at how I respond from now on.

  • Kerrybelle
    Kerrybelle Member Posts: 1
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    I’ve been lurking a bit, but just signed up when I found this thread...scheduled to start chemo next week, but had a CT and bone scan today and got the first good news so far - nothing found anywhere else! Yay, me!

    It’s been really helpful and less scary-making to read everyone’s stories here - even the bad ones. Thanks to everyone here for putting it out there.


  • mountainmia
    mountainmia Member Posts: 857
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    I want to clarify my last comment, on people saying dumb things. I was truly NOT referring to anyone here. I was thinking of something a relative on mine had just said, in his attempt to be kind and comforting. A lot of people have said things to me that made me think, that was so sweet in the intention but not really well done!

    So sorry if anyone misunderstood. I wasn't clear and I apologize.

  • VeeBee
    VeeBee Member Posts: 30
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    Totally understandable MountainMia, I think we have been in that situation a few times ourselves. Just recently I had someone say something and was shocked! And yes, makes me wonder if I have ever done the same in not choosing the right phrase to someone hurting as well. :( Saddens me to think I could of been so insensitive.

    Chemo Day for me to start at 8:30am today!! Will try and update. It is my 1st so I'm not bring to much with me as I'm sure today will be a circus. Just a Blanket, water and snacks.

    Unfortunately KerryBelle welcome to this little thread. It hurts that more people must join something like this for more info or just comfort! And YAY on nothing else found on your scans, Looks like you had a few nodes there positive :( I'd say that at the very least some good news.

    We are all here for each and everyone one of you, I don't have all the answers but i'm here to share my experience that may in a little way help you! Heart


  • VeeBee
    VeeBee Member Posts: 30
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    MarthaMW, Hows that hair cut looking? Hope the experience was comfortable for you. My hairdresser said at least I have a nice shaped head for being bald!!! Singing Thanks girl! LOL

  • lacombattante
    lacombattante Member Posts: 151
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    Good luck, VeeBee and let us know how your first day goes!

  • April0315
    April0315 Member Posts: 167
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    Best of luck to those getting treatments today. I'll be waiting to hear how it went.