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September 2020 Radiation Group

Has anyone started radiation in September? Tomorrow marks day 13/20 for me. I’ll have boosts for the last four, days 17-20. I was petrified prior to starting but, knock on wood :) it hasn’t been too bad. My skin is slightly pink. I’m using Triamcinolone 0.1% twice a day and Yoro Organic Manuka Crea in between. How is everyone doing and what are you using to get through treatments?

Comments

  • Dbloomfi
    Dbloomfi Member Posts: 2

    Today was my first of 20. It wasn’t awful but I found laying face down with the noise was stressful. I am normally a go with the flow type but I was close to panic mode in there. I talked myself down by thinking of the things I had to do at home when done. After I did ask the technician to tell me when we were halfway.I am hoping this gets easier everyday.

  • moderators
    moderators Posts: 8,633

    Dear Dbloomfi,

    Welcome to the BCO community. We are sorry for your diagnosis and the stress of treatment. We are glad that you reached out to our members to share your experiences and to hear from others. While you are waiting to hear from others check out this information on Radiation Therapy at our main page. Let us know how we can help you to navigate your way around and find the resources that you need.

    The Mods

  • sabbymama
    sabbymama Member Posts: 83

    Hello Everyone! I started my radiation treatments last week and things are going pretty well so far. Here in Belgium they do accelerated radiation, so I will only have 15 instead of the 30 my RO in the US had planned (today will be number 7). I'm very happy about that as the daily traveling to and from the hospital is tiring and rather inconvenient. Deep breathing technique is being used to protect my heart as much as possible and I think I've mastered the rhythm by focusing on counting grooves in the ceiling panels.....lol. It helps to have something to distract yourself from holding the breath for extended periods. I've been exhausted, had some collarbone tenderness, and a bit of nausea, but otherwise I'm doing well. The skin has not been an issue yet, but the doctor warned me it might start to show some redness/sensitivity this week. Hopefully the aloe vera gel and Aquaphor I have been using are doing the trick. I also picked up some calendula cream at the pharmacy as it was recommended by the techs, but haven't used it yet.

    Congrats Peridot on almost being done with this phase of your journey! I hope the side effects have been minimal.

    Dbloomfi--- I can't imagine how awkward lying on your stomach must feel and I probably would have panicked too, but I'm sure it will get easier everyday :). Hang in there!

    Cheers,

    Sabrina

  • dysonsphere
    dysonsphere Member Posts: 135

    I start my radiation today. I will have it on my R breast, axilla area, and neck. Honestly, I am not looking forward to it since I have a lot of anxiety about the radiation mask I have to wear and even the breathing! Good luck to everyone!

  • GinamarieZ13
    GinamarieZ13 Member Posts: 7

    Hello Everyone!

    Hope this note finds you all as safe and healthy as you can be. I had my planning session today and will begin radiation on September 29th. Positioning wasn't too bad..my neck got a bit stiff but the tech said I won't be in that position for as long during the actual treatment sessions. I just closed my eyes and took steady deep breaths. They are planning 16 whole breast (left) sessions and 4 boost sessions for a total of 20 in a prone position. Supposed to lessen any radiation to my heart and lung. My mother has been through radiation twice (once in 1997 and once in 2019)...thankfully no side effects both times. I was certainly hesitant based on my research but they said it was radiation (I had a lumpectomy on 8/14/20) or a mastectomy. Research has shown that lumpectomy plus radiation provides the same outcomes as mastectomy. I thought it would be drastic to go back in for another surgery. I had an easy surgery and positive recovery so I am hoping for the best with the radiation treatments.

    Wishing everyone all the best. Look forward to reading all the updates.

  • julyidcIIIc
    julyidcIIIc Member Posts: 2

    Hello

    I started radiation today. 25 treatments with 5 boosts. My rad onc has offered for me to use Mepitel -- essentially a fake adhesive skin that has been proven in Denmark to lessen the skin complications. Anyone else using mepitel?

  • MMinNC
    MMinNC Member Posts: 10

    Hello! I'm in my 3rd week of radiation, and the itching has gotten so bad that it keeps me awake at night. I'm getting radiation on my right breast, armpit, and supraclavicular area. My boob is getting swollen and sore, and I've been going braless sometimes when I'm at home. My breasts are on the larger side anyway, and they can get sore from not being in a bra. I'm just trying to do whatever is comfortable.

    I use Cerave cream immediately after a radiation treatment, then again before bed. I think I'll find some 100% aloe gel that I can refrigerate. Maybe it will help with the itching.

    I'm curious about the Mepitel. Do you keep it on when you're receiving the actual treatment? How often do you change it? When do you use a lotion?

  • arabiansrock
    arabiansrock Member Posts: 40

    July if I were you I would take them up on the mepital. I read the study and it was compelling that it provides definite benefits. Unfortunately my RO said NO. She will only put it on if I get moist desquamation, and then only over the wound. Nornally I would be much more assertive and bring in the study and say LOOK , but I really don't want to tick off my care team. Especially when they are pushing radiation buttons and control how my procedures go.

    Good luck to you.

    Gina I am going to be done prone also, RO cited the same reasons, safer for heart and lungs. I'm good with that, hopefully it isn't too uncomfortable. I go for simulation appt on Monday. Not sure when I will get started after that I want to put it off a couple of weeks, but RO doesn't.

  • Peridot875
    Peridot875 Member Posts: 2

    Hi everyone!

    Tomorrow is my last day of radiation. It hasn’t been too bad, although my RO said that I may feel effects for another week or two. I’ve been more tired towards the end and have been trying to get a nap in everyday. As of right now my skin looks slightly sunburned and my nipple is peeling a little. Hopefully it won’t get too much worse. I’ve been going braless in large cotton tees as much as possible, and I find that I’m most comfortable in cotton tanks with a “shelf bra” when I have to leave the house ;)

    * Sabrina thank you so much! I wish you all the best as well. Keep counting those grooves in the ceiling panels and it will be over before you know it!

    * Dbloomfi I hope you’re doing better and are more comfortable.

    * July I heard the Mepitel is great and really makes a difference. Lots of luck with it. Let us know how it goes.

    * Gina that’s what I had 16 whole breast and 4 boosts but on the right side. I read a lot of positive things about being in the prone position re: your left side and studies say it’s safer. I’m sorry you had an uneventful surgery. I had to have 3 lumpectomies so I definitely feel for you!

    * To everyone.. I wish you the best of luck. I’ll keep updating on any side effects. Now I need to decide whether or not I’m going to do hormone therapy :-/




  • GinamarieZ13
    GinamarieZ13 Member Posts: 7

    Hello Everyone:

    Just back from Radiation Session #1. I was on the table at 11:05 am and off by 11:11 am. Didn't feel anything...as I expected. Kept my eyes closed so I didn't see anything. Heard the machine going around me. Put the Calendula Cream on as soon as I got to the changing room (as per a recommendation from a friend...use it 3x a day regardless of side effects). 1 down...19 more to go.

    Hope everyone is doing well.

  • MMinNC
    MMinNC Member Posts: 10

    Ginamarie, I'm glad everything is going well so far. Let us know how the calendula cream does for you.

    Has anyone heard of Miaderm cream? I was using CeraVe cream twice a day, but the redness and itching is more than it should be at this point. My doctor suggested switching to Miaderm to see if it helps. (The smell of it is a bit odd to me, but I'll try it!)

    July- Here's a research article I found on Mepitel film. I talked to my oncologist about it, and after reading more on Mepitel film, she told me that I could use it if I wanted to. (This page has a link to the full article.) https://pubmed.ncbi.nlm.nih.gov/24486117/ I only have eight more treatments left to do, so I'm not sure if it would help me at this point. I would have to get my own Mepitel film and apply it myself. Does anyone use the Mepitel film and apply their cream on top of it daily?

    Dbloomfi, I hope your sessions aren't as stressful as your first one was!

    Hopefully, everyone's radiation treatment is progressing as planned!

  • Dbloomfi
    Dbloomfi Member Posts: 2

    Just an update...Things are much better after the first day. I don't know if it was a combination of the loud noises, being physically alone through this whole order, the realization that I am going through Cancer treatments or that my hormones are all out of whack since they took me off the HRT. OR a combination of all of above. I went in the second (and every day since) concentrating on the music played in the room and that seems to work to keep my mind off of it. I had my mapping for the last week (boost treatment) and they are putting me on my side so I only have 7 more face down treatments. Thank you everyone for your good wishes as they worked!!

  • GinamarieZ13
    GinamarieZ13 Member Posts: 7

    Happy Tuesday. Hope everyone is doing well. Today was treatment #10 so I am halfway done. SmileSo far just some pinkness, areola looks darker, and a bit of sensitivity overall. I am using cornstarch in the breast crease and the Calendula cream most days and pure Aloe Vera on other days if it looks really pink. It seems to be working as my skin is intact and thankfully no itching. 10 done 10 to go.

    Hope everyone is continuing to do well. Have a great day.

  • racheldog
    racheldog Member Posts: 209

    Had my simulation yesterday. The radiation onc said only cornstarch which sounds insane. How can a drying agent like cornstarch moisturize a breast that is being radiated??? I had purchased all the other recommended creams that others have used by their radiation doctors but cornstarch??? I can see dusting that under a breast where it touches the skin but only that. Any other comments? I felt like I got very little information from the place I chose to do radiation.

  • MMinNC
    MMinNC Member Posts: 10

    I used a cream recommended by the radiology department. It's called Miaderm. It's specifically for radiation treatment. It's not cheap. They gave me a tube, and I got more from Amazon. At 1st I did not use it, because I didn't prefer the smell. It's not a horrible smell. I just didn't prefer it. As the radiation burns became worse, I started to use it and was pleasantly surprised that it helped… a lot!

    As my treatment progressed, the burns became worse. Nothing would have stopped them, I think. Because of the painful burns, I had many sleepless nights. I finally ended up taking a pain pill. (I did not want to make it a habit, so I only did it for a few nights!) All that aside, I applied the Miaderm multiple times a day. Everything healed up really well, and later on the mammogram tech and the radiologist both commented on how I had no scars from the burns. Good luck with your treatment and hang in there!