Getting Through Radiation

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Tomichi1
Tomichi1 Member Posts: 32

I’ve been torn with making my decision about treatment for my DCIS (Stage0/Grade3). I finally met a Radiologist Oncologist who explained, in detail, why their recommendation of 5days/4wks is my best option. I’m also still meeting with a Breast Surgeon this week about mastectomy, but wanted to get any and all suggestions about how to deal with the side effects. I’ve researched homeopathy and will double check that I can take these things. I also saw a list here with helpful tips but it was from 2015 - curious if others have suggestions for what they’ve experienced. I’m an actress and am quite concerned about the fatigue. Can I still do my job with this? How long will it last? Thank you, Warrior Goddeses, for your guidance.

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  • Georgia1
    Georgia1 Member Posts: 1,321
    edited January 2019

    Hi Tomichi. Radiation is a bit unpredictable I've found. I did the five days a week for four weeks regimen, and even tho I have sensitive skin my side effects were minimal. The good ladies here recommended calendula cream and I think it made a big difference.

    From a diet perspective you'll need a lot of protein since your cells will be regenerating. And while I was increasingly tired towards the end I worked straight through; I just went to bed early and gave myself permission to take naps on the weekends. Personally the first two weeks were fine. Then I was a bit tired for about a month, and wore a bra as little as possible since I felt a bit itchy and sunburned.

    Hope that helps and you might also go say hello on the "starting radiation in January 2019" thread.

  • edwards750
    edwards750 Member Posts: 3,761
    edited January 2019

    I can’t speak to a MX because I had a lumpectomy. I also had radiation - 33 treatments in all. I scheduled all my appointments first thing in the morning. I didn’t want to wait around all day to have the treatments. I did take time off from work though because I had a stressful night job that also involved traveling quite a distance from our house.

    I had very manageable side effects which were slight burning and fatigue halfway through the treatments. My MO advised me when the fatigue hit not to fight it. I tend to be an Energizer bunny so I took her advice. I was tired but not overly tired.

    Good luck!

    Diane

  • Tomichi1
    Tomichi1 Member Posts: 32
    edited January 2019

    Did you do meat as protein or more plant based proteins? I've seen some homeopathy I'd like to try and I also need to buy a soft, no-wire bra.

  • Parrhesia
    Parrhesia Member Posts: 6
    edited January 2019

    Hello everyone. I wish you all the very best in your treatments.

    I am wondering about the utilization of the ASCO 2018 guidelines as well.

    Due to my age (38), I was first offered to go through 25+8 boosts (50 grey + boosts) conventional scheme of radiation (in line with ASCO 2011 guidelines). When I asked about the recent guidelines, radiation oncologists have discussed the issue on the board and agreed to give me the 16+4 boosts (42,5 grey + boosts). Is there anyone around my age and profile that went along with the shorter hypo fractioned radiation therapy? I would really appreciate your input as the treatment is supposed to start tomorrow in the afternoon . Yet I still do not have a peace of mind whether I am doing the right course or not since there are not many studies on the late side effects of this scheme on young breast cancer patients under 40.

  • PebblesV
    PebblesV Member Posts: 658
    edited January 2019

    Hi Tomichi1 - I went through 6 weeks of radiation (30 treatments) and was one of those who had minimal (if any) side effects. Fatigue didn't hit me during, but in the month after treatment was done I had those moments of needing a nap, or fell asleep by 10pm when I usually stay up until midnight. Didn't effect my work. Also my skin stayed good throughout - I recommend you be super good about lotioning and hydrating and that will help you get through with hopefully little to no side effects. I used 100% aloe vera gel and miaderm during treatment, aquaphor after. I applied lotion morning, night and also immediately after the radiation treatment (with miaderm).

    Parrhesia - good luck with your treatment, I think there was one person on our November radiation board who went through a shorter schedule, but she just completed so wouldn't know about the long term side effects. I say go into it positive, even with studies you never know what side of the coin you'll land on, and know that the radiation treatment is one of many things you can do to fight the breast cancer. There are also studies showing a half hour of exercise a day decreases your risk of recurrence by 50% so other things you can do too for the reassurance!

  • Ingerp
    Ingerp Member Posts: 2,624
    edited January 2019

    I did the shorter Canadian protocol (20 total) in 2016 but that was not an option this time around because of chemo, so did the 33-session protocol. It's the same amount of radiation, just a little more concentrated when given over a shorter duration. I only remember two days I felt like I had fatigue in 2016--days when I just had to get off my feet for a few hours. I had typical (but not terrible) skin impacts both times. They're very short appointments--in and out in about 10-15 minutes. Chances are if you'll be fine.

  • H8BC
    H8BC Member Posts: 14
    edited January 2019

    Hi -

    I just had my first of 25 radiation treatments. I put on Aquaphor but it's pretty greasy and sticks to my clothes. Can anyone comment about calendula lotion and/or Miaderm about how it might compare to Aquaphor. I love Aloe Vera but I was told I need to mix it with a heavier lotion.

    So far, one day was ok; a bit anxious on this first time, but trying to stay positive and get through all 5 weeks. My arm hurts a lot from being held overhead.

    Good luck everyone - thank you all for sharing your information.

  • JosieO
    JosieO Member Posts: 314
    edited January 2019

    I initially used just aloe vera but added Miaderm. I would take it with me and apply Miaderm right after my daily treatment. Because my radiation took place in the early summer, I kept my Aloe Vera in the refrigerator and would apply it whenever I came in from the outside. Liked the cool sensation. I never really used Aquaphor because I did think it was too sticky. A fair number of women posting here also used Miaderm and/or calendula with good results. Apply it as often as you think of it, but generally not before your treatment. (I put a heavy amount on right after my evening shower, nothing until after my treatment early morning the next day) I used one tube of Miaderm for seven weeks of treatment

    Search around on the site, you’ll find a number of comments on individual experiences.

    Best wishes to you going forward.

  • H8BC
    H8BC Member Posts: 14
    edited January 2019

    thank you, JosieO

  • AliceBastable
    AliceBastable Member Posts: 3,461
    edited January 2019

    While I was using Aquaphor, I wore men's thin cotton undershirts under my bra to keep the grease off. They also protected my clothes from the ink marks put on by the technicians. But it's also a good idea to get a couple of cheap Target or Walmart bras to wear for the duration.

  • Ingerp
    Ingerp Member Posts: 2,624
    edited January 2019

    Miaderm is mostly calendula so this second time around I skipped the Miaderm. I also used Aquaphor and Desitin--really just grabbed whatever was nearby several times a day. I'm not sure it matters as much what you use as that you put something on. Chances are you won't notice any skin impacts for the first few weeks. And I second the cheap bras. Mine tended to get stained from the markings they put on me periodically too, so I've thrown most of them away.

  • H8BC
    H8BC Member Posts: 14
    edited January 2019

    thanks, AliceB and Ingerp

  • Tomichi1
    Tomichi1 Member Posts: 32
    edited January 2019

    Did you find you needed to up a cup size for the bra? I’m reading that front closure is beat. Also curious about sleeping in it to avoid irritation

  • Ingerp
    Ingerp Member Posts: 2,624
    edited January 2019

    I bought a couple of front-close bras but found them difficult. It wasn't that hard to pull a jog bra over my head. I was just wearing S-M-L-sized bras so didn't change the size.

  • Tomichi1
    Tomichi1 Member Posts: 32
    edited January 2019

    Interesting. I was reading how you want the one easiest to get on to avoid over contact to sensitive skin.

  • Salamandra
    Salamandra Member Posts: 1,444
    edited January 2019

    I got skin side effects starting day 2.5. I didn't want to wear any bra - I just wore a soft cotton tight chemise. Now I'm done and back to work, I'm wearing the bra over the chemise until my skin heals up along the bottom where it started to blister.

  • Cowgirl13
    Cowgirl13 Member Posts: 1,936
    edited January 2019

    I did 16 days of radiation and had a few boosts. Only side effect was towards the end, my breast was somewhat red otherwise it was very do-able. I'm not the same age as you, I was 64 when I had radiation. It would seem that older skin would be more sensitive to rads but mine was fine.

  • DeeDeeT
    DeeDeeT Member Posts: 76
    edited January 2019

    Everyone reacts differently. I have sensitive skin and I started getting quite pink during my first week. (I am doing 16 + 4 boosts) I'm in my last week of treatment now and am very red and am also sporting a rash of some sort. At my treatment today, my oncologist told me I will probably continue to get worse for the next week or so after I finish treatment, but then it should heal pretty quickly.

    I have used aloe, cortisone (for the rash), miaderm, and aquaphore. I can't say it prevented my skin issues, but I think it has soothed the pain somewhat. I can't imagine trying to wear any bra right now. But, I do wear soft cotton tanks. They also help protect my clothes. I'll probably wear them under my bras before going back to normal.

    This has really been an experience. I have a family member who has sensitive skin, very similar to mine, that sailed through her radiation a few years ago with very few side effects. It's not very predictable. However, even though I'm not having an easy time, I'm still glad I am having this done. I don't ever want this cancer to come back.


  • Tomichi1
    Tomichi1 Member Posts: 32
    edited January 2019

    Hi Fellow Warriors! Had my Simmulation yesterday. Geeze, the wooden board we’re expected to lie on was right out of the 50’s! Are they all like that?? My ribs were killing me (lying prone). Also curious about the creams, etc others are using for the side effects. I was told that coconut oil was out due to it holding in moisture. Have others been told this? I was told that calendula was cool and I’m also investigating CBD lotion. That might be awesome!!

  • Tomichi1
    Tomichi1 Member Posts: 32
    edited January 2019

    I’m finding such a “back and forth” with what to use on the skin area. On one site I saw coconut oil or hempseed oil with lavender drops. The nurse for my RO said no to any oils. That they trap moisture. Didn’t think that’d be a bad thing. Also saw about green tea bags steeped and then spraying the tea 3x’s a day during treatment.

    Hope you’re feeling ok. Not a good club to be in, for sure.

  • AliceBastable
    AliceBastable Member Posts: 3,461
    edited January 2019

    Wooden board? Really? Wow.

  • Tomichi1
    Tomichi1 Member Posts: 32
    edited January 2019

    Oh boy, sounds like this may not be the norm?! This is st Memorial Sloan Kettering. Just awful. Not even a cushion where your head goes, just a folded pillowcase sort of deal. My right rib was killing me.

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