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Starting Radiation January 2020

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Couldn't find this topic, so thought I'd create it. I start 21 days of rad on Jan 2, ready to get the party started (and over!).

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Comments

  • DorothyB
    DorothyB Member Posts: 143
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    I hope it goes well!

    I had radiation last July. What I think helped me the most is:

    1) Drink LOTS and LOTS of water

    2) Lubricate a LOT! I used lotion in the AM & PM and immediately after each treatment. I put lotion every where that radiation might get to - including asking the rad techs where the radiation would enter & leave my body. I had read of people who had radiation burns on their backs from radiation exiting. My radiation was more angled, so didn't have that problem.

    3) Walk (or other exercise) every day that you can. I found that I had less fatigue when I was active.

    4) I had to practice stretching my arm above my head so that it was less painful. Unfortunately, I have found that I need to continue stretching on a regular basis or it gets tight again.

  • redhead403
    redhead403 Member Posts: 65
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    I think I start on the 7th. Nervous about that. I think I have 30 RXS

  • britgirls
    britgirls Member Posts: 54
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    I was due to start today but just got a call canceling the appt and requesting a new CT scan (now a breath hold scan ... why didn't they do that in the first place?). I'm not a worrier, but this has me worried now. Waiting to hear back from the radiation oncologist.

  • 2019whatayear
    2019whatayear Member Posts: 468
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    I hope you get a call back ASAP and this is just a case of dumb red tape . I hope the needing a new scan doesn't hold things up.

    I have my simulation appt on Friday and start 25 treatments on Monday 1/6 :-)

    The radiation room is freaking cold . I might double my socks and wear my fake fur lined slipppers .

  • Dreamer1
    Dreamer1 Member Posts: 23
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    First 1/21 done!

    DorthyB - Thank you for the tips. I brought a water bottle with me and drank from it on the way to appt. and drank immediately afterwards, too. I met with nurse and she recommended:

    • Cerave Cream in tub (or Cerave Baby - no parabens). She said no restrictions such as applying a certain number of hours before treatment.
    • Hydrocortisone 1%, in morning and evening, all over treatment area, starting now. She gave me a picture of the treatment area, which was helpful. I think it's a computer-generated picture that was made after the simulation CT.
    • Calendula or Miaderm (she said expensive, not necessarily better than Calendula).
    • Keep stretching - I have been in regular PT for the last few weeks. My range of motion is great, but I did have some numbness and "tightness" in my upper left arm, could be from the SNB or the PT thinks it could be from my left arm being extended for prolonged period of time during surgery.
    • Keep walking - I have been doing pretty hard aerobics 3-4x week and will continue as much as I can, then walk.
    • She said deodorant fine

    I have been applying organic calendula for the past week and will continue to use it.

    Not sure how I feel about the hydrocortisone, but will probably try it.

  • Flo80
    Flo80 Member Posts: 212
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    Hello friends I am starting radiation this month. Had my surgery on 26 November. I have my CT stimulation scan with the breath hold on 6 January. Nice to meet you all

  • jojojaja
    jojojaja Member Posts: 1
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    Starting jan 13 for 21 days!

  • [Deleted User]
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    I am suppose to start on the 15th or 16th. 16 treatments. Was told today the my oncotype score was 18 so chemo was not recommended. So that was a blessing. Still nervous and worried about how I will do. Thanks for the radiation tips Dorothy B.

  • mikamika
    mikamika Member Posts: 242
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    I was told to use Calendula only. Which makes me a bit nervous. I would prefer to prevent as much SE as possible.

  • sarahsmilesatme
    sarahsmilesatme Member Posts: 53
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    Finished chemo on Dec 4th and am starting radiation on Jan. 7th. 20 days total - lying on my stomach (left breast).

  • Dreamer1
    Dreamer1 Member Posts: 23
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    I wish I were lying on my stomach! Not wild about lying face up on table with arms overhead, exposed.

  • moderators
    moderators Posts: 8,052
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    Welcome, jojojaja! Wishing you the best of luck on your upcoming treatment!

    The Mods

  • AnnC2019
    AnnC2019 Member Posts: 93
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    What helped me was speaking to anyone I came across in the waiting room. I kept meeting women who were having their last treatment and I was at the beginning. It gave me hope. Before I knew it, it was my turn to say it’s my last day. It is a great moment. The time does go by quickly. During the treatment I kept my eyes closed and prayed

  • britgirls
    britgirls Member Posts: 54
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    whatayear ... hello there! Hug

    So I did a breath-hold CT the next day. The RO explained that she wanted to minimize damage to my right lung and also to the skin on my left breast which has the expander in place (it's kind of flattened because saline was removed in prep for radiation but still difficult to get the angle of radiation beam right apparently). So now I will start next Friday, Jan 10. Not sure if five or six weeks as my RO is reworking my plan.

    Otherwise, hair is growing back whiteish/gray (how rude!), but the very last eyelash fell out. Have the stubs of new ones coming in. Eyebrows would be bald looking if I hadn't had microblading done. Was already doing it before chemo. I hope they grow back better than before!

    All the best to each of you. Let us know what your routine is as far as skin care.

  • Bunnybumps
    Bunnybumps Member Posts: 37
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    Hi all!

    I'm starting 30 sessions tomorrow. I have extremely fair and sensitive skin, and already have fatigue from Fibromyalgia. I know some women who have had easy experiences and some who have had very difficult times. So while I'm preparing for the worst, I'm hoping for the best. Mostly I’m looking forward to meditating on the beautiful fish tank they have in the gowned waiting area before treatment.

    X

  • rubyredslippers
    rubyredslippers Member Posts: 94
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    I first had radiation 11 years ago and it was a significantly different experience to what I experienced 2 years ago.

    To my surprise I had no burning, and even though I'd been told to put some lotion on my skin afterwards, I didn't, and I didn't need to.

    I had a bit of trouble with slight nausea at times, acid reflux and fatigue immediately after treatment which lasted a couple of hours. Otherwise radiotherapy has advanced considerably over the past decade, my skin wasn't effected and I did nothing differently.

  • alissat
    alissat Member Posts: 7
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    I start radiation today & I'm super anxious. RO initially said 5 1/2 weeks but they have me scheduled for 7. Will have to find out what that's all about. Hope everyone has a great day.

  • mikamika
    mikamika Member Posts: 242
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    alissat,

    Good luck with your treatment!

    Mine should start soon, too.

  • [Deleted User]
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    Hello January radiation ladies. Good luck to everyone. Has anyone heard of using gold bond lotion? I might try that. Suppose to start my 16 tx next week BUT oncologist found an enlarged lymph node that was maybe missed during surgery and also a spot in right lung. So more tests scheduled. UGH!!

  • 2019whatayear
    2019whatayear Member Posts: 468
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    1 down 24 to go. My Rads people say Aquaphor 2x a day 1x after treatment and 1x before bed. IMO it's just about applying a really think mositurizer to protect the skin. The funny part - to me is that the nurse told me to make sure to moisturize on the weekends too. She really doesn't know me well because l am a big fan of lotion I already mositurize 2x a day- I just switched up what I use on the radiation area, of which I"m not 100 percent sure of the borders for the really thick Aquaphor I'm using.

  • mikamika
    mikamika Member Posts: 242
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    KIDI919,

    Sorry to hear about the findings. Fingers crossed for you!

    How did your oncologist find those things?

  • texkat
    texkat Member Posts: 14
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    Hi, ladies! I will start radiation on 1/20/20... 6.5 weeks of daily radiation. I was diagnosed with triple-negative IDC in July, completed 4 months of dose-dense chemo the day before Thanksgiving, then had a lumpectomy and lymph node dissection on 12/18/19. They took out 25 (!!!) lymph nodes, I’m still a bit sore and working on healing from that now. But pathology reports were good, showed pCR. All my docs seem very pleased and tell me radiation should be a lot easier than chemo was. I'll be meeting with the radiology team day after tomorrow for mapping and planning.

    Hoping to get get good pointers on managing through the process from you warriors here!

  • mikamika
    mikamika Member Posts: 242
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    TexKat,

    Congrats with your good report! I got my mapping on New year's Eve. Now waiting for the treatment to start.

  • mikamika
    mikamika Member Posts: 242
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    2019whatayear,

    How are you doing with Aquaphor? Unfortunately, our facility do not like it. What a surprise! I've ordered a few tubes in advance. They recommend only Calendula cream and aloe vera juice (?).

  • godisone
    godisone Member Posts: 30
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    Good luck honey. I hope radiation therapy treats you well:-)

  • 2019whatayear
    2019whatayear Member Posts: 468
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    Mika Mika I don’t mind the aquaphor , it’s like a and D ointment consistency w/o the scent .

  • mikamika
    mikamika Member Posts: 242
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    Could you please tell me about the tattoos? Are they permanent like normal tatoo?

  • Dreamer1
    Dreamer1 Member Posts: 23
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    Hi Mika, I have two very tiny tattoos. They help mark the treatment zone. Each one is a very tiny black dot. The staff used a small needle like a sewing needle and dipped it into the ink. Then made a pinprick - that is the tattoo, just a dot. Smaller than a freckle. One is in between my breasts and one is on the side of my breast, under my arm. I was concerned about having permanent tattoos but they are so small I don't think anyone but me would notice them.

  • mikamika
    mikamika Member Posts: 242
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    Dreamer1,

    Thank you for the information! It's interesting, why do they use permanent ink instead of the temporary.

  • Mouse57
    Mouse57 Member Posts: 32
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    I had my first radiation treatment yesterday and the second later today. A week ago Monday we did the first positioning and I had a CT scan at the local hospital and then this monday we did more positioning and x-rays at the radiation center. It seems they do things differently at different places - here they don't normally do tattoos but marks with ink then cover specific locations with plastic shields (then re-mark as needed). So far the plastic films have stayed on with showers and my skin hasn't reacted to them. The RO said they only use tattoos when the marks don't stay on well.

    The actual radiation took less time than the positioning and marking - my arm really cramped up for that one but less so for the treatment. I lost track of exactly how many treatments I am getting - somewhere in the neighborhood of 30. I am getting whole breast radiation plus axial lymph nodes plus clavicle lymph nodes - I had micromets in my sentinel lymph node and slight lymphovascular invasion. They haven't mentioned boosts but I also forgot to ask. The radiation center is only 15 minutes from my house so that's good. My appointment is at 11 am which the last two days has allowed time for the streets to be plowed!

    My first visit to the RO I brought a list of all the moisturizers I had seen on this site and he didn't have strong opinions about any of them - so far I am using Aquaphor at night under a t-shirt and aloe vera after the treatment and trying to cover a wide area including my ribs on the side and upper chest.. I didn't find calendula cream or ointment anywhere except Amazon and am not sure about ordering it. Hopefully it won't get to bad - the RO said to expect some peeling etc under the breasts and in the armpit.

    Anyway - good luck to everyone!