Summer Rads 2014

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  • jhodro
    jhodro Member Posts: 240
    edited June 2014

    DDOL: Is it hard to find Aloe without alcohol in it, or are you using one of those?

    Sunshine: maybe we'll need another board in a year or so. I toy with the idea - but the idea of being a "C" again like before I had children just sounds heavenly. Perhaps they could do a little lipo while they are in there? LOL.

    Hope everyone is having a great week. I'm back to the office tomorrow after 10 weeks off. Should be interesting!!

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  • Rosiesride
    Rosiesride Member Posts: 513
    edited June 2014

    My RO said it was fine to go in the pool...I was the one concerned about the chlorine...but I will start rads June 23...I will see how it goes as far as irritation...even just walking and jogging in the shallow end and not getting soaked on the chest area would be better than nothing!  I do love the water aerobic type exercise...especially after doing nothing during chemoland!!  Rosie

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  • DDOL
    DDOL Member Posts: 40
    edited June 2014

    Hi jhodro I was going to get Calendula or go to the store and get a piece of the real Aloe () this was I will keep it cold  thinking it will feel better when I put it on 😃

     

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  • Sunshineinky
    Sunshineinky Member Posts: 461
    edited June 2014

    Ddol I got fruit of the earth at Walmart.  It was the one recommended to me.  

    Jhondro in a year I'm sure I'll meet my outta pocket again.  You know they are using stomach fat to restore the breast health.  Sounds like lipo to me! 

    Rosie, enjoy the pool for me too!!! I love exercising in it and now I'm sad I can't go in! 

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  • traveladdie
    traveladdie Member Posts: 5
    edited June 2014

    Hey all! I started the first of 20 rads on Monday. I  had the option of 6 weeks or 4 weeks. I am super worried about fatigue. I have been walking a little over 3 miles {not a big deal for me} every day to radiation in hopes that continuing to work out will help. We shall see. :)

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  • jbokland
    jbokland Member Posts: 890
    edited June 2014

    my RO just called me.  He is such a sweetheart !  He is really trying to work with me around my wedding.  The first mapping revealed that I must deflate my TEs from 700 & 800 down to 250 cc each!  He didn't want me to have to deal with the wrinkled boobies in my wedding dress and we reworked the scheduling til after the wedding.   Bravo doc!!

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  • Sunshineinky
    Sunshineinky Member Posts: 461
    edited June 2014

    That kind of just plain ole thoughtfulness just makes my heart smile jbok!!! 

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  • PinkCarn
    PinkCarn Member Posts: 70
    edited June 2014

    Thanks for the great advice. I had my reduction 5 weeks ago. I have 26 to go out of 33. Just started the second week. I found a travel size of aloe vera at CVS too.

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  • rettemich
    rettemich Member Posts: 369
    edited June 2014

    Yep the Fruit of the Earth is the one my Nurse gave me. Didn't think to check CVS. I didn't remember seeing it at Wally World. I found my travel size at Target.

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  • rettemich
    rettemich Member Posts: 369
    edited June 2014

    Ok I don't know where else to post this and since this one has to do with rads I post here.

    VENT:

    If one more person calls me a trooper I'm going slug them. Get your a** on this thing and have your boob, that is so tender you can hardly stand it. Have it compressed about half the size. Oops, not quite enough lets compress some more. One more second and you know it's going to explode.  NO I am not a trooper, I want to scream and yell and stomp my feet and basically throw a tantrum. And quit telling me it will be over soon it Won't. And it wasn't. Oh and that stuff leaking from my eyes, no worries, just tears. But hey, your skin is holding up Really Good.

    And hubby WTH why are you home napping when I am the one that going through h*ll you only had to stand there. Really?

    Geeze there has to be a better way.

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  • Sunshineinky
    Sunshineinky Member Posts: 461
    edited June 2014

    Rett why are they compressing your boob? Aren't you still in radiation? 

    Ps... my napping is getting out of hand lol

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  • Deblc
    Deblc Member Posts: 479
    edited June 2014

    Started rads yesterday and again was told to put NOTHING on my skin, no lotion, no aloe, no soap, not even water. Which means I am not to bathe that area at all, including underarm!!!!  I said to the techs, five weeks of not bathing under my arm, I am going to smell !! But they were adamant that the only thing I can use is Johnson's baby powder, only if needed, very lightly. They say they have seen it make a difference with people who don't follow instructions, and they have more skin problems. So it's very strange to me that most of the ladies on these rads boards are told to use various lotions etc, and are even allowed to swim.

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  • Sunshineinky
    Sunshineinky Member Posts: 461
    edited June 2014

    Deb your instructions are very strange to me! I was instructed to bath that area daily using only dove soap.  I cannot imagine not bathing my underarms for 5 weeks.  

    So many different sets of standards! 

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  • Deblc
    Deblc Member Posts: 479
    edited June 2014

    Very odd to me too, I've never heard of anyone else getting those instructions, apart from the patients at my radiation clinic. However, I did speak to someone who followed their protocol and she said that she held out for a couple weeks but couldn't hold out any longer, and after she bathed the area she got badly burnt there. You would think that there would be a standard that everyone goes by. Which only indicates to me that they don't know seem to know what works and what doesn't!

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  • Sunshineinky
    Sunshineinky Member Posts: 461
    edited June 2014

    Debic I am 20 treatments in and I have not even been pink yet.  I bath everyday, use a variety of products (within the approved list) and I was told today that even though I have dead skin coming off (i had a seroma after a biopsy and this is the area the skin is coming off) I've held up exceptionally well.  Knock on wood very minimal pain due to swelling.  

    I agree but each part of the world seems to do things differently! Are you in the US?

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  • Deblc
    Deblc Member Posts: 479
    edited June 2014

    Sunshine, I am in Jamaica, and it is so hot here now I am not looking forward to not bathing under my arm! I am glad to hear you are doing so well, makes me less scared. Do you have radiation of the axilla as well as breast? I had lymph nodes removed, I don't know if that's why I got those instructions. 

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  • Sunshineinky
    Sunshineinky Member Posts: 461
    edited June 2014

    I only had the sentinal node removed and I am receiving raditation to that area as well.  It'll be ok go easy with the baby powder.  I'm using plain old cornstarch to keep things dry.  

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  • rettemich
    rettemich Member Posts: 369
    edited June 2014

    Ok I don't know where else to post this and since this one has to do with rads I post here.

    VENT:

    If one more person calls me a trooper I'm going slug them. Get your a** on this thing and have your boob, that is so tender you can hardly stand it. Have it compressed about half the size. Oops, not quite enough lets compress some more. One more second and you know it's going to explode.  NO I am not a trooper, I want to scream and yell and stomp my feet and basically throw a tantrum. And quit telling me it will be over soon it Won't. And it wasn't. Oh and that stuff leaking from my eyes, no worries, just tears. But hey, your skin is holding up Really Good.

    And hubby WTH why are you home napping when I am the one that going through h*ll you only had to stand there. Really?

    Geeze there has to be a better way.

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  • rettemich
    rettemich Member Posts: 369
    edited June 2014

    Sorry did a double post. LOL 

    Sunshine, it was my Sim for by boosts. They attach a plate, kind of like the ones used in mammograms, to the gurney and push it down by hand. And I guess I will have to endure that during my boosts too. They use a different beam that doesn't go as deep so they need the bed close to the surface.  The area is a little bigger than I thought. If I get any sorer I'm not sure I can handle it even for a few minutes. I understand the process but it just doesn't make it any easier. Will you having boosts?

    Debic, That IS really strange. I met with my RO today, I am just starting to get pink and a tad bit spotty, she told me I was really doing well and whatever it is I was doing to keep it up. I think she was afraid to ask in case it was something not on their list. I use Aloe, Aloe and more Aloe. And I have some emu oil that also has lots of Aloe. I shower but don't use deodorant before my treatment. After I use a crystal deodorant. I have 9 regular and 5 boosts left.

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  • Sunshineinky
    Sunshineinky Member Posts: 461
    edited June 2014

    Oh Rett, I hope they don't do that to me lol.  Yes I have 8 boost scheduled! I just noticed we will be done the same day! Woo hoo for us! I still have 6 whole breast left before the 8 boost start.  I'm going to ask them tomorrow exactly HOW they do that.  I'm not sure my breast could handle that kind of activity I'm not red but it's just sore.  

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  • ohiofan
    ohiofan Member Posts: 206
    edited June 2014


    Sunshine,  I had sim for boosts last week.  The machine didn't even touch me.  It was like the initial sim.  Had the first boost yesterday and it lasted a little longer than the regular rads.  Skin is still doing well.  Only 5 more treatments!!

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  • PinkCarn
    PinkCarn Member Posts: 70
    edited June 2014

    I wonder if they would let you use some type of wipe under your arms?

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  • Brwneyedgirl
    Brwneyedgirl Member Posts: 113
    edited June 2014

    It has been great to read all of the recommendations. I had my meeting with the RO this week.  CT tomorrow.  I think I will start rads by the first of July.  Not looking forward to doing this in the summer.  I think I will take my last dip in the pool prior to rads this weekend.  I did find out I might be a candidate for 4 weeks, plus boost instead of 5 weeks plus boost.  fingers crossed.

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  • Deblc
    Deblc Member Posts: 479
    edited June 2014

    PinkCam, they told me, AND gave me written instructions that say "avoid washing or wetting the treatment area" and "No creams, lotions...etc". I think their explanation was that the less you aggravate the area, the less chance of the skin breaking down. But, in addition to the ladies on this board, I have friends in Canada, China and Spain who all say they have never received the "no washing" instructions, and they all did fine with their treatments. So..I think I will be ignoring this!

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  • Deblc
    Deblc Member Posts: 479
    edited June 2014

    I am also curious as to how many tattoos most people got. I'm having the breast, axilla and supraclavicular area done, and I will have had three different tattoo sessions: one on the first planning day, more tattoos were added on the simulation day, and one scheduled for today to mark supraclavicular area

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  • Sam2U
    Sam2U Member Posts: 233
    edited June 2014

    Deb--I'm having rads after mastectomy and ALND, but was told to wash and use aquaphor/aloe 3 times a day.  I'm only 2 treatments in so I don't know the effects yet.  Could it be the type of machine/radiation you are receiving?  (I am ignorant about these things just guessing)

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  • rettemich
    rettemich Member Posts: 369
    edited June 2014

    Sunshine, Maybe it has something to do with the type of machine. The actual Machine doesn't touch me just the plate, from what i gathered they make a mask that attaches to the plate that has my specific treatment area. Like a mask with your pattern cut out. So it is not hitting any other tissue. Then they use a different type of beam that doesn't penetrate as deep.
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  • Crazywabbit
    Crazywabbit Member Posts: 563
    edited June 2014

    Debic

    I am getting the same areas radiated plus the internal Mammary LNs. I have 5 tattoos,two on the sternum (which hurt like Hell to do), one on either side of the lower outer  breast area and one upper breast in  line with the nipple. Hope for no more when they do the boosts.

    I was instructed no washing other then what runs over the area from above. OK to use deodorant of any type, no talc powder, cornstarch OK. They also said to not use any lotions etc until told to do so. I had a sore area on the top of my ALN incision, tech said to go ahead wth aquaphor but I used California Baby on it yesterday twice and it feels so much better today.  I will not use anything unless it hurts again.

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  • Sunshineinky
    Sunshineinky Member Posts: 461
    edited June 2014

    Deb I have 6 tattoos.  The one in the center of the chest hurt the worst. My nipple one thankfully didn't because that area is numb! 

    Rett I pulled your description up at treatment today and asked them if they were going to do that to me.  I'm sure I looked frightened lol.  Thankfully they said no!!!!! 

    Ohiofan I'm jealous! How many treatments are you having total? I had number 20 today! 5 more whole breast and then 8 boost! 

    My good news for the day.... my MRI came back as an impingement. Sooo thankful that it's nothing to do with my BC and all to do with the injury I sustained to it in January! I hope to get a cortisone shot soon!! They said that should solve this horrible shoulder pain! 

    Anyhow ladies we are slowly but surely getting there! 

    Ddgm enjoy that pool this weekend! 

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  • jhodro
    jhodro Member Posts: 240
    edited June 2014

    Very happy to hear that Sunshine!! Be sure to get that looked at when this is all said and done. I had two cortisone shots in my wrist and they were good for a while, but some PT later (before all this BC nonsense) and it was much much better. (I must sound like I'm advertising PT, but it's just that I am amazed how much it has helped me over the years!). 

    I'm very happy to hear how you are all progressing. It sounds bizarre, but I'm really looking forward to getting on with the next phase of treatment (only 3 chemo's to go) so that I can get on with a life. The doctor appointments, the baldness, the physical reminders of this disease. I'm ready to move forward.

    Anyone planning to get the tattoos removed afterward, or getting them enhanced with something better - - or - - are they not really that noticeable?

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