January 2018 RADS group

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  • PVM
    PVM Member Posts: 136
    edited January 2018

    Hi ladies im officially done woot woot woot!!!! had my last rad today & danced out of there to Bruno Mars 24K. There was no bell ringing as they don't have one but there were lots of happy tears & hugging of the techs. I can't believe this long journey is done. Hope you ladies have a wonderful rads day & i shall cheer each & everyone one of you on your last day too...xo

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  • PauletteK
    PauletteK Member Posts: 2,205
    edited January 2018

    Katie, did your check with your surgeon? Maybe he/she can give you a better answer about your pink and dimpling. You want to take care the fluid problem before radiation because rads will cause more fluid retains.

    Heading to my #26, I’m counting down each of them. Praying for my skin continue to hold up.

    PVM.... 🙌🙌🙌🙌🙌 💃🏻💃🏻💃🏻💃🏻💃🏻💃🏻 Wasn’t it fast for you!


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  • Anonymous
    Anonymous Member Posts: 1,376
    edited January 2018

    PVM, Way to go! Must feel so good to close that chapter shut! Must feel SOOO good. WOOT WOOT!

    Thanks for all the replies about x-rays. They did more today. I think they are just making sure they are getting all they need to get. Briefly saw my RO, and she said she will see me on Tuesdays or Thursdays to check the skin. I am truly not sure what to do with the Aquaphor. I put on a tiny amount after today. I think it makes sense to wait unless you see something. It seemed like my nipple was quite red today after. I looked more at the machine today, after I asked them if it was ok to do so. Of course, they all get the heck out of the room, ha. I can't remember who said it, but it does make you wonder what cancer care will look like in 100 years. I will not be here to find out! :)

    2/30+ AND COUNTING! lol

    A great day to all!

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  • scaligirl
    scaligirl Member Posts: 74
    edited January 2018

    PVM, oh wow YAY!! Congrats on finishing!

    Glow, VL, Jenruns, Katiejane welcome! I'm wishing you all a smooth process with little side effects! Apply that cream

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  • PVM
    PVM Member Posts: 136
    edited January 2018

    Thanks so much ladies for your well wishes & i shall cheer each of you when your done too 😊

    My skin has held as best as it can. My breast is red & tender esp around the nipple. My under arm is dark as well as my scar. I find that when I do my stretches i can now feel the pull alot more. My RO told me that my skin may prob get it's worse in 2 weeks & suggested to do saline soaks if it happens. I woukd definatly suggest to keep on applying the cream ladies & even if at first you don't feel any SE still do it. I try to do it 2 to 3 times a day. Sending you all positive vibes & healing as you continue to kick butt 😀

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  • smwusaf
    smwusaf Member Posts: 129
    edited January 2018

    Congrats PVM!

    My girlfriend gave me a present last week. She calls it a radiation wreath and it had 20 wrapped items hanging on the wreath. Every day I have a treatment I get to open one surprise. some are chocolates, ornaments, etc. but todays was a magnet for my fridge with a picture of my grandson. I think the whole thing was so sweet and as I see it get emptier I know I'm getting closer to the end. 8/20!

    I am definitely going to do the same for the next person I know that has to go through this. :)

    gentle hugs everybody

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited January 2018

    smw, What a beautiful idea from your friend!

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  • OCDAmy
    OCDAmy Member Posts: 873
    edited January 2018

    I love the wreath idea. I agree that if I ever have a friend or family member who gets breast cancer, I know of several things I would do to help them through the process. I think so many of my friends and family didn't know what to do or say. I have been on this long road since February last year and sometimes I think people have forgotten I even have cancer. You get lots of cards, flowers, gifts, etc. at first but by the time rads came around, if felt like everyone forgot me!

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  • VL22
    VL22 Member Posts: 851
    edited January 2018

    OCDAmy - I was just feeling “forgotten” the other day, then felt guilty about it!

    The truth is I was in good spirits at my last chemo, but then waiting for rads I got kind of low. First day I felt close to tears. I don’t think others, even those who love us the most, really get that this battle is constant for us and we don’t get “used” to it.

    The wreath is a really wonderful idea

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  • smwusaf
    smwusaf Member Posts: 129
    edited January 2018

    OCDAmy, I've only been on this road since Oct and I feel that way too. I hear from some that oh, you're so close to finishing, radiation should be a breeze. :( I get it, we all have our lives to live but I really appreciate the ones who continue to reach out, even with a simple text saying how are you feeling today or do you want to get a coffee.


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  • CindyNY
    CindyNY Member Posts: 1,022
    edited January 2018

    KatieJane777- so much goes on with a bc DX. You're family has your back, but truly don't know what you're going through mentally & physically. You go with your emotions, its your body. As you start rads, its really fast and takes a while for your skin to show reaction to it. You've got this! You're not being ridiculous.

    PVM - I'm so happy for you! Great exit song too.

    Smwusaf- the wreath is a great idea. Go girlfriends!

    Today was 14/16. My skin is holding up, but it ain't pretty! Lots of lotion on as I got home. I'm thinking $5 Dunkin Doughnut gift cards for the 4 that treat me daily, on my last day. This way they can treat themselves, its right up the street.

    ONWARD ladies!

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  • gigibee
    gigibee Member Posts: 192
    edited January 2018

    love the wreath idea. I know if I have a friend going through rads I will go to the treatment center and leave notes and things on their car if I can, I think that would be a lovely surprise.

    I had one friend ask me if I was giving off radiation and if it was going to be in her house , that hurt

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  • DownNotOut
    DownNotOut Member Posts: 99
    edited January 2018

    gigibee, my BOSS asked me if I could still work around babies during RADS and I FREAKING work in a hospital!!! All that info at her fingertips and she did such a blooper! Good thing my previous RO volunteered that I would not be "radioactive" - I guess they've been asked that before.

    PVM - I am so happy for you!!! Sorry there was no bell, but I'm sure the triumphant feelings were still there! I am so proud of you. I know you are a smart cookie and will continue to pay attention to your skin and lather up for the next few weeks.

    Jen, it really does worry me that your skin will not be prepared for the coming assault if you don't start now...if they are concerned about what you are using (which is fair, so they should be making the recommendations), then get some Miaderm/Calendula cream and/or Aquaphor and take it in so they can read the label. If they still can't tell you if it is "safe", then they might not know what they are talking about. Ask them when they usually start to see SE's on the skin. If they don't know or say it's different for everybody and won't commit to an answer, then you can tell from reading these posts when most of these gals have noticed changes. It seems that it is rare for one's skin to be totally unscathed by RADS and your team seems weirdly optimistic.

    Welcome to all you other new folks! I'm cheering you all on!

    As for me, I'm starting to think I live in the radiation twilight zone...after all the delays with my treatment, we have snow flurries outside and so my MRI Bx got cancelled for tomorrow because everything is shutting down. My southern city has maybe 1 snowplow and is hilly, so it all comes to a screeching halt if there is the hint of ice on roads. I am rescheduled for next Wed, so tack on 1 more week to having the Bx, then getting the path report back the following week, then trying to make my new plan. I am losing my mind. I am now 9 weeks post Lx and those microscopic cells that want to kill me are just having a great little vacation in my unradiated boob. Plus taking yet another day off work and that affects my coworkers. And then I think about all the other people who are just as anxious as I am who were also waiting for important tests and procedures that won't happen tomorrow, and it makes me so sad.

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  • JenRuns
    JenRuns Member Posts: 350
    edited January 2018

    any recommendations on standard stretches you ladies find helpful? I found some generic post-surgery stuff, but wasn’t sure if there was anything specific that you felt was helpful.

    Down, I know it’s weird to me too that they’re saying not to use anything. I’m at a nationally acclaimed center with some of the best ROs in the world. (Seriously, they pioneered some of the technology that is standard today, like cone bean CT and active breathing control.) I saw the RO today and he reiterated - keep it clean and dry, and if they start to see changes they’ll give me cream.

    I don’t think they’re saying they expect me to come out unscathed, but that when the time comes, they will handle it. No need for “preventive” lotioning, and it could actually have negative impacts.

    I put my trust in them... and will deal with what comes along. I just need to be watchful and say something when I feel I need something,

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  • PauletteK
    PauletteK Member Posts: 2,205
    edited January 2018

    I love the wreath idea, you got such a great friend SMW, I’ve been forgotten from friends already. Cancer is a lonely road, I’m just glad I got my husband who have been so much supportive.

    Amy you are on this path two months longer than me, I started last year in April.

    Kim, put lotion after radiation would be good, i load up lotion 4 times a day. You can lotion all the way up to your collarbone even up to your neck. I found out last week even half of my neck turned red. Collarbone area got pretty red.

    I counted my zap for boost, only 4 zaps, whole breast was 10.


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  • DownNotOut
    DownNotOut Member Posts: 99
    edited January 2018

    Yes, Jen; ultimately, we need to trust in the people who are caring for us, and it sounds like you are in the best of hands. Good luck, my new friend!

    smw, that wreath is the kindest of gifts. I will try to be that kind of friend if I am ever given the opportunity. Thanks for sharing!

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  • OCDAmy
    OCDAmy Member Posts: 873
    edited January 2018

    Jen, my RO also said keeping Breast dry was important and I was told to start using cornstarch starting the week after rads started along with creams. I didn't pre-lotion. From what my RO said, the cream just helps the breast feel better it doesn't stop the radiation from burning the skin

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  • PauletteK
    PauletteK Member Posts: 2,205
    edited January 2018

    Jen, I do what my PT taught me on stretches, and I do that whenever I can. I found radiation tightening up my muscles. Here is the few stretches I do daily.

    image

    image

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  • PauletteK
    PauletteK Member Posts: 2,205
    edited January 2018

    Amy, do you put any lotion after radiation? I know many RO won’t even allow you to put lotion before rads.


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  • Georgia1
    Georgia1 Member Posts: 1,321
    edited January 2018

    DownNotOut, I am so sorry you are getting delayed again. Maybe it is "Groundhog Day" and not "The Twilight Zone?" As I recall that movie ends happily for Bill Murray so here's hoping the same is true for you.

    And on the subject of using cream during radiation, I'm reposting the instructions I got from Johns Hopkins, which worked beautifully. Not because they are "right," but because it might be a useful discussion point for some of you with your teams. Best wishes to all.

    image

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  • OCDAmy
    OCDAmy Member Posts: 873
    edited January 2018

    I was told not to put on lotion 1 hour before rads but that was only because I had a bolus placed on my Breast and they wanted to make sure it stayed in place. I put on cornstarch immediately following rads and then at night slathered on the aquaphor. I am also at a major NCI Cancer center/teaching hospital. My RO said I could use any deodorant I wanted but it might be irritating on the radiated side. I started using Native deodorant and love it

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  • PVM
    PVM Member Posts: 136
    edited January 2018

    Down i am so sorry you got delayed yet again, i know that must be disappointing, hoping you have no more delays & can start your kick the big C in the butt for good treatment!. Im also sorry that both you & gigibee had to deal with insensitive people asking you if you will give off radiation. Don't listen to them ladies & keep on your positive path, sometimes i feel people do not realize all we go through & just hearing hurtful comments do not help out.

    VL22, smwusaf & Amy & all other ladies that feel forgotten you are most definitely not. You are all warriors & kicking butt. I feel that sometimes people don't realize that our symptoms are not always on display that because we do not look sick does not mean we are suffering or in pain. To me all of us are warriors, each of us has a different story but we all have a common bond. As CindyNY said onward ladies

    Ladies i was told not to put on lotion 2 hours prior to rads, after when i got home i would shower & put my lotion on. For those ladies that are getting rads close to your lymph nodes i was told to apply lotion on my back as well as the rads hit that spot as well as my collarbone too as it starts to turn red around that area. Also i was told that if my skin had any issues or sores to do a saline soak to help the skin heal.

    I am attaching a link of stretches that i do daily in the morning & before i go to bed. They have helped so thought i would share. Have a great night ladies & continue to kick butt. Sending positive healing vibes to all of you - hugs

    https://www.youtube.com/watch?v=mnO02bKMLkA


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  • PauletteK
    PauletteK Member Posts: 2,205
    edited January 2018

    I do the stretching exercises that PVM posted also, I usually do that when I do my daily walks. All I can say my muscles are all tight if I don’t do stretching. From what I’ve been told we are easy to get frozen shoulder. I got that few years ago and it was a painful experience.


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  • Katiejane777
    Katiejane777 Member Posts: 109
    edited January 2018

    Hello Everyone! Saw the nurse today and she thought my breast was fine (the dimpling was just about gone) so treatment 1 went ahead. So surreal when the bunker door shuts and they beam on. I shut my eyes and concentrated on keeping very very still lol. My daughters and hubby were with me today and as my daughter had done a placement there she caught up with her mentor so it was nice. I put my aluminium free deodorant on straight after treatment and they freaked out because the nurse hadn't checked it first. It was fine but lol great way to start treatment. I went shopping straight after and checked my boob when I got home. It's def pinker already. I'm spending the rest of the day on the lounge I've decided as I don't have to work today.

    Thanks PVM I'll def do those stretches. You are all amazing!! Let's go kick some cancer butt!!!

    Lots of Gentle Hugs xx

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  • SoniaL
    SoniaL Member Posts: 131
    edited January 2018

    SMW, love the wreath idea - what a sweet friend! I see we are both in Charlotte. I'm hoping there won't be much snow in the morning and we can get to our treatments. As of now, I finish up on a Friday (1/26) - would hate to push that to the following Monday, but I also hate driving in snow. :)

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  • smwusaf
    smwusaf Member Posts: 129
    edited January 2018

    Sonia, My appointment is before 8am today so it looks like driving will be easy. :) I go to radiation at CMC Pineville.

    Sarah

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  • PauletteK
    PauletteK Member Posts: 2,205
    edited January 2018

    Ladies, get ready for zapping again. Today is my #27/30, I’m counting down and praying my skin will hold up each day. I even dreamed about how painful my armpit ...... ready?


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  • smwusaf
    smwusaf Member Posts: 129
    edited January 2018

    Paulette - you're strong, you're almost done! I dreamed about my RO last night.... It really wasn't very nice. lol I'm not sure where that came from because he seems very nice, a bit nerdy but nice. Some nights I just don't sleep well.

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  • PauletteK
    PauletteK Member Posts: 2,205
    edited January 2018

    Smeusaf, I had half cup of latte yesterday afternoon, I couldn’t sleep so I took melatonin 3mg, then I slept. I am not strong at all, I admitted I’m weak during my chemo time. It will go fast and you look back you realize it isn’t that bad.

    I walked over 2 miles this morning and took some pictures while I walked. Let me share with you and cheer up the day.

    image

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  • smwusaf
    smwusaf Member Posts: 129
    edited January 2018

    Those are beautiful. What are they? 2 miles? That's great. you are stronger than you know. I keep telling myself that.

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