Spring 2015 Radiation Sisters

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  • cbooklvr
    cbooklvr Member Posts: 66
    edited April 2015

    Aeon, JC Penney has a decent selection. I found a comfortable DD wireless at Lane Bryant. Too bad they don't work for you. I did try on 3 diff types, only 1 worked for me.

    My RO just wants me to use cornstarch several time a day until my skin has irritation. I can also use Aloe Vera at night. They will give me creams as needed.

    Cherice

  • florida2015
    florida2015 Member Posts: 186
    edited April 2015

    Hi. I start rads next week and I'm annoyed because they insisted I had to have the tattoos. Wish I had gotten on here first although they aren't noticeable.

    I did buy aquafor. Should I buy the cream that was mentioned by most of you also?



  • MombieZombie
    MombieZombie Member Posts: 509
    edited April 2015

    Aeon--We have a place here called "Judy's Intimate Apparel". They specialize in hard to find styles and sizes, and they cater to women with breast cancer issues. I wonder if your area would have a local shop like that. Our store is in Lacey, Washington. Perhaps you could do a net search for stores like it in your area?

    Rosy--I still get moments of tenderness/pain in key places. They said I would continue to feel radiation's effects for a time. I'm pretty sure it's all normal. Please let me know if you find out differently when you ask your RO. The day I was done, I was turned out without ceremony and I was told there would be no follow up. I plan on asking my MO if I'm supposed to be tender this late in the game.

    Jean--I'm sorry to hear that you are still having lower GI problems. Glad to hear you are nearing the finish and your skin is still holding.

    My healing continues to be slow, but improvement keeps coming along. Scar tissue problems are getting worse. I have ropes of it that go from my lymph removal scar, under my arm all the way to my elbow, and I can feel the pull all the way to my fingertips. I'm lined up for therapy twice a week until I leave for Hawaii. Hoping to get it under control. I was relieved the therapist ruled out any signs of lymphedema though. I'm happy for that.

  • rekidal
    rekidal Member Posts: 77
    edited April 2015

    Hi everyone, I had Sim done Tuesday for my boosts.   The RO wasn't happy with the first position and they decided that going on my side would be the best.  I went in this morning and was told that my RO, who just got back from vacation, doesn't like the side position.  So, they had me do a different prone position for the RO to review.  They told me that because I have a large seroma they would have to use a higher dose of radiation to get through all the fluid, which they do not like doing.  They also mentioned that she may not do the boosts.   I told the tech that I absolutely want the boosts.  I want to make sure I complete the radiation as originally planned.  She agreed.  My MIL had two lx's and radiation, and six months later it was back and she had to have an Mx.   I am trying to prevent that from happening to me.  I am suppose to start the boosts Wednesday.  I think I will be meeting with the RO on Tuesday.   Has this happened to anyone else??

  • ElaineTherese
    ElaineTherese Member Posts: 3,328
    edited April 2015

    rekidal,

    I also had a big seroma after my lumpectomy. My RO wouldn't schedule the sim until my surgeon drained some of the fluid out of the seroma. He took out 40 cc's of fluid, and then we did the sim and began radiation. The drain session took 10 minutes. Has anyone talked to you about draining?

  • NurseShark
    NurseShark Member Posts: 176
    edited April 2015

    first week done !!!

    Jean good advice "this is saving my life" I will try repeating that Monday! I've had less anxiety the last two days getting better.

    As far as creams I was told only to use the one given by center.AloeVesta 2 x a day, no deodorant, only plain dove soap bar for cleaning. They said they d give me another formula of same brand if I got pink.

    So far so good. I'd say I'm fatigued but I don't think it's radiation s fault...baby decided to stop sleeping through night this week😲 teething I think.:)

  • rekidal
    rekidal Member Posts: 77
    edited April 2015


    Elaine Therese, I didn't see my RO today, just the tech who does the Sim.  I asked her if that was an option, and she said they probably won't recommend it being done.  She said that a lot of times it fills right back up.  Did that happen to you?  I am going to insist on the boosts to try and be sure the cells are all killed off.  Hopefully, she will agree, and they will be able to do it without me going back to my surgeon to have it drained.   I was looking forward to having Monday off because of the holiday, now I just want to get back and find out what they are planning. 

  • ElaineTherese
    ElaineTherese Member Posts: 3,328
    edited April 2015

    rekidal,

    No, my seroma didn't refill. I made sure to wear a really tight sports bra with socks stuffed in it. Since you're almost done (just have the boosts to do), it's probably not that big a deal. They'll just have to find a way to git 'r done.

    Happy Patriot's Day!

  • rekidal
    rekidal Member Posts: 77
    edited April 2015


    Happy Patriot's Day!

     

  • ElaineTherese
    ElaineTherese Member Posts: 3,328
    edited April 2015

    Thanks, rekidal. But, we don't celebrate Patriot's Day in OK. I haven't always been an Okie, though (not that there's anything wrong with being a life-long Okie). I grew up in northern CT, and went to high school in Springfield, MA. It was nice to have Patriot's Day off from school back then.

  • cbooklvr
    cbooklvr Member Posts: 66
    edited April 2015

    Just curious, what is Patriot's Day?

    Finished my 1st week of Rads, yay! Without incident other than a cornstarch mess when trying to apply in bathroom at work.

    Now relaxing and watching Sister Act, planning on a bra free Saturday.

    Cherice

  • BC2015
    BC2015 Member Posts: 86
    edited April 2015

    Hi. Completed day 7 and my skin is pink and right now feels like it is burning. What do you use instead of soap to wash? I bought a baby wash product but maybe not the best thing? RO staff not good with giving me direction. The aquafor lotion is really thick and gross to me. I bought a emu oil sensitive skin cream but now I wonder if I should stop using it. I have weeks to go still.... I wish they gave a information pamphlet

  • CurlyG23
    CurlyG23 Member Posts: 36
    edited April 2015

    Hi ladies,

    I am officially half way done w/ rads! I am a little relieved to hear I wasn't the only one who got emotional also....it seemed so silly & odd at the time! It only happened on my first day & I was just laying there on the table & kinda heard/knew what to expect. Yet, As I lay there, I kinda just felt like "WOW, this is the next step (after doing five months of chemo) in helping me survive". No anxiety, I was happy, but I honestly thought.....damn, now the techs are gonna ask me if I'm ok...since I always think I'm so darn tough...never cried in chemo or had any side effects. They were nice & obviously understanding

    ...it's my body & I'll cry if I want to!

  • zjrosenthal
    zjrosenthal Member Posts: 2,026
    edited April 2015

    Curley, love the song. Made me smile and we all need that. This rads part of the journey isn't easy. We've all been through a lot already with sugeries, chemo etc. We are already beaten down starting rads so no wonder we get emotional. I cried during chemo and kinda scared the nurses. My chemo doc had to come in and calm me down. Then I cried when I found I needed more surgery and again while getting tattoos. One of the tecks doing the tatoos hugged me and said I was making her cry too. I'm not a big baby usually but shoot, this is hard. If it wasn't for my sense of God's plan in this I don't think I could do it. 😄 Love, Jean

  • MombieZombie
    MombieZombie Member Posts: 509
    edited April 2015

    God's plan in this is part of what saved me while going through rads. You all know I almost quit. God and our gals here helped me pull through and finish.

    I wrote this today. Thought I would share. Hope it makes you smile.

    Behind the Pink

    Dreaming,

    She steps behind a pink curtain

    Wearing a flowing pink gown

    She hadn't been wearing before

    Of this she was surely certain

    Strangely,

    In the room, there is a pink box

    Plainly labeled "Lost and Found"

    She knew that it was hers

    In her hands, pink keys for the locks

    Curious,

    She sat down on a pink chair

    To unlock the box and look upon

    The mysterious contents therein

    Lifting the lid, she began to stare

    Surprisingly,

    The box is filled with many pink things

    She had thought were lost

    A picture among them, of her...before,

    To which her heart still clings

    Excitedly,

    She removed her silken pink gloves

    Oh so carefully, she began to retrieve

    Those precious things, yearning to

    Regain all of her past loves

    Sadly,

    Some slip from her grasp, into the pink pile

    But this simply reveals more things

    She hadn't yet noticed before

    Although they'd been there all the while

    Wonderingly,

    She pushes aside all the pink things

    There, behind the pink, she finds

    A new picture of herself

    She is beautiful, and she has wings

    Suddenly,

    A mirror appears, bordered with a pink frame

    With awe and wonder, she sees

    All the things the pink has changed

    Knowing she would never be the same

    With hope,

    She turns from the pink all around

    Like a caterpillar becomes a butterfly

    Her pink chrysalis had been

    Filled with things both lost and found

    With joy,

    Her heart need not sink into the pink

    For she has wings, and she is beautiful

    And so she soars among pink clouds to find the Sun...

    Behind the Pink.

    By Sara L. Tveten, April 17, 2015

  • ElaineTherese
    ElaineTherese Member Posts: 3,328
    edited April 2015

    cbooklvr -- Patriot's Day commemorates the Battles of Lexington and Concord, the first battles of the Revolutionary War. It's only celebrated in a few states, like Massachusetts and Maine. After the first few weeks of rads, I've been bra-less, even at work. It's much more comfortable, but it's forced me to be creative with my wardrobe. Lots of layered looks and loose tops. Enjoy your bra-less Saturday!

  • zjrosenthal
    zjrosenthal Member Posts: 2,026
    edited April 2015

    Radiation light my fire. Come on radiation light my fire. Set that tumor right on fire!

    My tecks they are the best it's true. Their precision couldn't get much higher.

    Cancer you are gonna lose. We've set you on your funeral pire!

    Radiation light my fiiii...rrreeee... Teehee! Love, Jean

  • cbooklvr
    cbooklvr Member Posts: 66
    edited April 2015

    LOOL, what a creative bunch of ladies. Jean that is too clever.

    Mombie what a beautiful poem, your very talented.

    Elaine your brave, I can't do braless at work. I would be paranoid all day thinking I looked strange.

    Cherice

  • zjrosenthal
    zjrosenthal Member Posts: 2,026
    edited April 2015

    Cherice, cancer patients are supposed to look strange. We work hard at it! (That's a rule I just made up). Teehee. Love, Jean

  • Aeon
    Aeon Member Posts: 21
    edited April 2015

    Cherise and Mombie, thanks for the suggestions. I'll take a look. I'm braless a lot with my tank top folded underneath, but it gets really uncomfortable.

    I'm done with week 1 (well, 4 days) and I'm already pink and slightly swollen after each treatment. It isn't super painful, and it calms down by the next morning, but I'm concerned that if it's like this now, what's it going to be in another week or two? I am using the Radiaplex 5-6 times a day (it says at least 3x/day). [and no, I'm not allergic...I tested it on other skin] Since it calmed down before I saw the doc, she wasn't concerned about it, saying they worry more about the persistent redness.

    Has anyone else reacted this quickly?


  • ElaineTherese
    ElaineTherese Member Posts: 3,328
    edited April 2015

    Aeon,

    I was pink after the first week, too. I'm still pink, but I never started peeling. So, there's that. I just use the Radiaplex three times a day.

  • Aeon
    Aeon Member Posts: 21
    edited April 2015

    That is encouraging! Thanks Elaine!

  • MombieZombie
    MombieZombie Member Posts: 509
    edited April 2015

    I got pink and sore right away, but I kind of reached a plateau with it until week four. Then I looked RED and you could see the exact perimeters of my treatment field--skin still wasn't breaking much and I really never peeled much. The last 10 days was when things got harder--but only in the area of my tumor bed. Those last days, I had to only wear those camis with the loose, built-in bras and I had to make sure the fabric didn't stick to my skin where it was breaking. For me, because my skin was most troubled in the fold under the breast, I found it important to wash every morning or my irritations would get worse. Keep doing what they tell you at the clinic. Luckily, the pink/red and skin issues seem to heal pretty fast after the last treatment. :)

  • florida2015
    florida2015 Member Posts: 186
    edited April 2015

    what lotion or cream did you use? Aquafor, aloe , cocoa butter, I start this week....still can't believe this is happening to me.

  • MombieZombie
    MombieZombie Member Posts: 509
    edited April 2015

    florida--your RO or nurse will likely recommend what they think you should use. There are a surprising number of different opinions and recommendations out there. I used cornstarch under my breast and a homemade cream until the fifth week. Then I needed aquaphor, silvadene and neosporin for certain spots. Whatever you use must be washed off each morning--need to show up for treatment with clean skin. I know what you mean--it's hard to wrap your brain around all of this. Hang in there. It will be over soon. Hugs

  • florida2015
    florida2015 Member Posts: 186
    edited April 2015
  • CassieCat
    CassieCat Member Posts: 1,257
    edited April 2015

    florida, I used calendula daily after treatment, aloe vera once things started feeling like they were "burning" more and aquaphor at night at some point.

  • PeggyG6020
    PeggyG6020 Member Posts: 40
    edited April 2015

    I just finished radiation on Thursday, April 16th. I had three weeks of targeted radiation on my right breast, then 1 week of boosts. This is a brand new protocol. I used caledula gel or cream, plus alba moisturizer, and I did not get any burning, just pink skin. I am fair skinned, and they expected me to burn, but I didn't. I did not use the moisturizer that the oncology nurse gave me, except for the week before. I used calendula 3 times a day-morning, after radiation, and evening. And then used the alba moisturizer am and pm, after the calendula dried a little. I got the Boiron Calendula, you can get it on Amazon. I had also been using the alba moisturizer all thorugh chemo, and then daily.

    Has anyone else tried this? My RO said that he had 2 other patients use the calendula, and one had no pink skin, and one did have pink skin, but no burning. When I read about the terrible burns and pain, I feel pretty lucky.

    I am hoping that i don't get any problems now that I am done.


  • JJOntario
    JJOntario Member Posts: 356
    edited April 2015

    I've jusy noticed little pin dot scabs around my aerola....lots of swelling going on too. They documented it and are watching it. I went and bought some comfy (sort of) sports bras in a size larger but I really just like my DH's old and soft undershirts.

  • ElaineTherese
    ElaineTherese Member Posts: 3,328
    edited April 2015

    Ugh! After radiation today, I was going to pick up my kids and I was stopped by a cop for wearing my seatbelt wrong.

    I waved my Radiaplex cream at him and explained why I was wearing it incorrectly. My boob has been a bit tender, and it just felt better to have the seatbelt below my armpits. The cop said that it I wanted to wear my seatbelt that way, I'd have to get a note from my doctor. Oh well; at least he let me off with a warning.

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