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A rad onc weighs in on radiation "burns"

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Comments

  • adagio
    adagio Member Posts: 713
    edited March 2013

    I had my first radiation treatment this morning. It went OK. I don't have any cream yet, so I guess I should go out and buy some. I am apprehensive about the whole thing to be honest.

  • 35_smiling
    35_smiling Member Posts: 21
    edited March 2013

    Hello everyone.  

    I want to say thank you to spinnerpon for posting the comment and link for this discussion. I am soon to have radiation in a few weeks time and I am so glad and again thankful the ladies who have post their experiences. Thanks to everyone I have my long list of questions for my doctor to make sure I am not in he dark for anything.

    Good luck to those ladies who have started your radiation and all the best and congrats to those who have finished.

  • rmlulu
    rmlulu Member Posts: 1,501
    edited March 2013

    Adagio - yeah, #1 rad done:) tomorrow ask the rad nurse if they recommend any cream for skin care. They may provide cream for you...my rad center has offers cream (aloe) and I did purchase aloe and miaderm to begin conditioning my skin before rads. I see RO once a week to discuss how I'm doing...comforting.



    35smiling - best wishes for your April lx and rads. Thanks for your encouragement:)))



    Take good care!

    Cindy

  • MsW2012
    MsW2012 Member Posts: 36
    edited March 2013

    adagio, I have been very apprehensive too about the radiation. I just had #13 of 33 and by now the tension has eased quite a bit. For me it was just such a huge unknown. I asked LOTS of questions! But the RO's and techs are super nice and helpful. We want to zap that cancer good so it doesn't come back any time soon. Don't kick yourself for being nervous. It's some powerful stuff.

  • Destina
    Destina Member Posts: 51
    edited March 2013

    Hi everyone,



    Haven't been on the boards for a bit and wanted to stop and see how you're all doing. Sounds pretty good, I must say, and I'm glad to see that. :-)

    I just had 14/16 this morning and will be finishing up on Wednesday. Yea! My experience has been very good overall. After a lot of what I'd read, I was worried about skin reactions, breakdown, etc. But other than some reddening, my skin is doing great. I have had some nerve pain (intermittent sharp shooting pains) and a pretty tender nipple area along with overall breast swelling and tenderness, but nothing unmanageable at all. The most severe side effect I noticed came over this past weekend and that was fatigue. Whew! I felt wiped out. Slept 11 hours on Saturday night and took it pretty easy on Sunday. I'm tired today but definitely have more energy than I did over the weekend.

    I'm glad the accelerated plan was offered to me and after researching it, I'm glad I chose it. Hats off to you women going in everyday for 6 weeks. This is my fourth calendar week (started mid-week), and I am very ready to be done.

    I do have to say that I feel extremely grateful for the nurturing and competent care I've received. Everyone...from receptionist to techs to nurse to doctor....was really great. I'm going to bring them a small gift of thanks on my last day...Wednesday!



    ***quick note on cream for anyone looking for ideas: Miaderm worked very well for me, and I've also used a vitamin e cream from our local co-op and even aveeno this weekend. All worked great. I only used Aquaphor a couple of times overnight, as I really hated the heavy, greasy feel. Oh, calendula cream was nice, too. I lubed up faithfully 3-4 times/day and I'm not sure if that's what helped or not, bit skin reaction was very minimal for me and I'm quite fair skinned.

  • rmlulu
    rmlulu Member Posts: 1,501
    edited March 2013

    Destina - Yeah, so close! I see Ireland in your future :))) Thanks for the tips and sharing your experience ... Eases the fear of the unknown. Let us know when to start Happy Dancing looking for my dancing shoes.

  • Destina
    Destina Member Posts: 51
    edited March 2013

    Thank you! And you & I are already dancing between boards. I just answered you over on another one! ;-)

  • Tammy_M43
    Tammy_M43 Member Posts: 565
    edited March 2013

    Cindy, I had some hard areas and a seroma prior to treatment but as soon as the rads started I tried to not even touch the area. My incision got a little red and tight but now a month since my last treatment everything has settled down.



  • adagio
    adagio Member Posts: 713
    edited March 2013

    Tammy - did you not put the cream over the incision area? I put the cream all over the breast area and in the armpit. The incision feels so weird (bumpy, lumpy) that I hate touching it. It doesn't hurt though. I had my 2nd treatment today - still a long way to go.

  • Cynthie
    Cynthie Member Posts: 21
    edited March 2013

    Hello again from freezing cold Germany! 

    Finished my first "week" of rads---so far, so good!  The RO seemed very pleased today.  I am feeling increased soreness, sensitivity and tightness along the outside but no pinkness.  Not too tired yet, still putting in my usual 10000 steps every day.  Cool  I decided to wash the Bad Girl on Wednesdays and weekends (but very carefully with clear water, as advised) and moisturize or use hydrocortisone afterwards in between their precious markings.  These markings are 10'' long Surprised (horizontal and vertical) done in NONpermanent marker---on the German forums they are referred to as "war paint" haha!  They even marked up the Good Girl!  It's verboten to redraw the lines yourself if they disappear, although many say they do it anyway.

    I found out that they are integrating the boost with the daily rads dosage, so that I'm getting 2,2 Gray per session.  Has anyone heard of that technique? 

    Cindy, you make me laugh calling it "laser tag"!  Have you ever been over here to visit your relatives?  Come visit me---I'm in the Frankfurt area!

    Hugs to all fellow cancer kickers!!

    Cynthie

  • rmlulu
    rmlulu Member Posts: 1,501
    edited March 2013

    Hi y'all from warm sunny Rancho Mirage!



    Cynthie - yeah 1st wk done! Not sure what your tx schedule is. Mine is 28+5 boosts with regular sessions at 1.8 Gray per session. RO said this schedule would be kind to my skin...I had asked about a shorter schedule with only 30 Grays...but I will receive +50.

    Just want this laser tag to kill any sneaking cell that might be lurking on the dark side. Wow you have serious markings...I have 4 tats look like small hard to find freckles with sharpie bulls eyes and 2 stickers...

    Will let you know the next time over your way would be fun!



    TammyM43 & adagio - massaging miaderm on incision scar followed with aloe. Trying to keep the area soft...still tight hard and bumpy but hope it is discouraging hard tissue buildup.

    Good to know this will calm down after tx is complete!



    Who rah to those complete! Others kicking c with laser tag zap!

    Hugs

    Cindy

  • Tammy_M43
    Tammy_M43 Member Posts: 565
    edited March 2013

    Cindy, yes I did cream up all over but very gently and no massage as I had been doing prior

  • Tammy_M43
    Tammy_M43 Member Posts: 565
    edited March 2013

    Cynthie, I also did at least 10,000 steps a day throughout treatment....I think it did help....

  • 35_smiling
    35_smiling Member Posts: 21
    edited March 2013

    Thank you Cindy!

  • numbersinger
    numbersinger Member Posts: 3
    edited March 2013

    I just finished rads on Friday.  I did not have any skin issues to speak of until week three.  The first issue was radiation rash.  The last week I have had swollen underarm, missing skin under my arm and now missing skin and raw area around the nipple.  I have not found much at all that is helping.  I hate the heavy greasy Aquaphor.  I have aloe that I keep in the fridge and that is the only thing that gives any relief at all.  

    The Cancer Boutique at Duke had a small heart shaped pillow that they gave me that has helped more than anything for the underarm issue.  Fits under the armpit and keeps skin from touching skin.  Really good for helping me get some sleep.  I have also been using nursing pads for the nipples.  I put aquaphor on them and wear them inside my bra or cami.  

    Kind of disappointed as my radiation oncologist assured me before starting rads that I would only experience a mild sunburn type of burn.  I never expected the effects that I am experiencing.  

  • rmlulu
    rmlulu Member Posts: 1,501
    edited March 2013

    Congrats numbersinger RADs completed! Happy Dance...bunny hop seem appropriate. Sorry that you're hurting so:(. Wonder if other centers have heart pillow maybe my airline neck snooze pillow will work...ugh that underarm skin on skin.

    Think that is why this is a mental as well as physical tx.

    Grind of being there, mystery of skin tolerance, preventative measures, no pain just pushing forward each day into unknown counting down...hope no SEs. Gonna go get my miaderm&aloe.

    Let us k ow how your breast recovers over the next few weeks...sending calming cooling restorative thoughts your way(((hugs)))

    Cindy

  • schoolmom
    schoolmom Member Posts: 327
    edited March 2013

    I had 2 heart pillows I was given at the hospital after surgeries (one for lumpectomy and one for port) I use one to sleep with and one in the car to pad port area (on left) from the seat belt strap.  They are wonderful!

  • adagio
    adagio Member Posts: 713
    edited April 2013

    I use a sock filled with cornstarch and put it in my armpit during sleep. Got this idea from an internet site - have only had 4 treatments so don't know if it works yet or not. I like the idea of the heartshaped pillow - perhaps I will look for one of those. 

    Sorry to hear about burned skin and peeling - my sympathies are with you. I am dreading this leg of the journey!!

  • Tammy_M43
    Tammy_M43 Member Posts: 565
    edited April 2013

    Numbersinger, sorry about your bad time.... Healing thoughts your way....



    I was given a crescent shaped pillow (like an airline neck snooze pillow but not as thick) that I used after surgery. My surgery site was near the armpit so it was great. I didn't need it during treatment but it seems I was very lucky....



    Thinking of everyone in treatment....

  • Cynthie
    Cynthie Member Posts: 21
    edited April 2013

    I do love my heart pillow---these days I carry it under my arm for extra support while trotting around the house. If you don't care how silly you look, you can attach it with an Ace bandage for hands-free action.  Cool  Isn't it funny what little inventions we come up with?  I also made a few little silk and cotton "pillows" to stuff inside my bra or under a soft cami at night.  They really relieve pressure from the bra band and straps.

    Now I'm into water cooling pads (made out of ziploc snack baggies) and will next try making them using cheap hair gel (idea from YouTube)---and will make silk pouches for them.  "I hope you didn't really like that ugly silk tie, dear!"  The water acts like a shock absorber for any jiggling caused by walking, I was amazed to discover.  (They go in the fridge, not the freezer, of course.)

    Someone had a suggestion to wear a silk or very soft cotton tank top under astretchy bra, so that's what I'm doing now.  It also makes a great spot for the cool pads and avoids that plastic-on-skin feel.

  • Tammy_M43
    Tammy_M43 Member Posts: 565
    edited April 2013

    Cynthie, some great ideas!

  • laurascott1016
    laurascott1016 Member Posts: 8
    edited April 2013

    Cynthie- love, love, love your ideas and sunny disposition! Way to be!

    Today for me is 22 of 33. Moving right along. Have some bumpy, itchy areas and an ultra sensitive nip! Not sensitive in a good way! :)

    I too am not a fan of the Vaseline like aquaphor. It doesn't help with the itching and is so heavy.

    I meet with my RO today, so I will ask for an alternative.

    All in all, not bad and one day at a time is serving me well.

    Have a great day everyone. Good thoughts coming your way!

    Laura

  • rmlulu
    rmlulu Member Posts: 1,501
    edited April 2013

    Hi y'all

    Laurascott1016- congrats 22/33 yippee goal is so close:) are your last 5 boosts? Let us know what RO suggest....hate the sticky thickness of aquaphor, but it works.

    Cynthie- creative supports...YouTube your creations :)) would love to sew or ziplock...hair gel too clever...lol:)

    Schoolmom- heart shape pillows very cool...going to see if cancer society has any for lumpies...or get out sewing machine:)

    Adagio- yes, cornstarch in knee hi my speed right now, but with all these creative ideas my options are expanding.

    Numbersinger- hope the days away have brought a big smile and life after rads is good!

    MsW2013- hang in there...how are you doing...(((hugs))) take care:)

    Today is 14/33! Friday will be 50 yard line....yes I'm counting down...like a little kid. My incisions are very pink and lumpy hard...skin is getting tan...with some little flaking...fingers and toes crossed!



    Sending healing thoughts for healing breasts and spirits! (((Hugs)))

    Cindy

  • MsW2012
    MsW2012 Member Posts: 36
    edited April 2013

    Laurascott: I find the next best thing to Aquaphor is vitamin e cream 30,000 IU. I found it at CVS, their brand. Nice and thick so put on slowly like Aquaphor. It has been keeping my skin soft. Hope that helps!

    waiting for doc now with my xray questions. Take care!

  • rmlulu
    rmlulu Member Posts: 1,501
    edited April 2013

    Hey MsW2012!



    Glad you found something that works for your skin...will take a visit to CVS. Hope your RO answers all your questions to your satisfaction. Have a great day:)

  • MsW2012
    MsW2012 Member Posts: 36
    edited April 2013

    Thanks RMlulu! Yes got my answers. I think my case is complicated because I have four different fields, from 5° to 260°, plus 3 sub-fields! Then you throw in x-rays and well, there's a lot goin on there.

    Check off #15/33! Woohoo! Moisturize & hydrate everyone!

  • rmlulu
    rmlulu Member Posts: 1,501
    edited April 2013

    Hey MsW2012- I'm right behind you by a day. Today is 15/33:)))

    Gonna sit out under a tree and blow bubbles...1/2 way there I can see the goal line...my bubbles are dancing that way...woohoo!

  • MsW2012
    MsW2012 Member Posts: 36
    edited April 2013

    RMlulu thanks for the smile! I think we have some bubbles around here somewhere. Life can always use a little bubbly!

  • Tammy_M43
    Tammy_M43 Member Posts: 565
    edited April 2013

    Nearly half way! Well done ladies, the end is in sight......

  • numbersinger
    numbersinger Member Posts: 3
    edited April 2013

    Skin is a little better today (6 days after last treatment) but just barely.  It is funny what things we have to try to get comfortable.  About three days ago the skin under my breast is starting to peel. I discovered that it helps to turn my cami inside out. I have to wear a full length cami as I work and can't go without a bra.  Wearing it inside out puts the elastic on the outside and makes it much  more comfortable.  Right now a bra is just out of the question.

    I did find that using cocoa butter is helping relieve the itch and dryness much better than the Aquaphor.  I hate that greasy heavy feel so have been experimenting with other creams.  The cocoa butter is just what is working for me right now.

    I don't think I used the creams enough during my first treatments as I was not seeing any differences in my skin.  Let this be a caution to those of you who are just starting radiation.  Use those creams even if you are not seeing a change. And....I was never told to use cream in the armpit area and that area is by far the worst as far as burns and peeling.  so don't forget the armpit ladies.   You will be glad later.

    Anyway, the peeling seems to be getting a little better.  Hoping I am on the downhill slide and starting to heal.

    Have a good day out there, warriors.

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