JUNE 2018 starting RADIATION

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  • GreenEyes81
    GreenEyes81 Member Posts: 389
    edited May 2018

    missmelissa90 - that was how i was, didn't do much scared to induce ld. :)

    I am possibly looking at Tomoxifan...I have two sets of "doctors"...one recomends starting now and the other has his patiants wait until after rads. He said there is a hypothsis the tomoxifan can interfer with the rads. He stressed it was not confirmed and I could do either though. Haven't had a chance to reseach it myself. Since I may end up doing chemo afterwards I am going to wait anyways.

  • ChelseaSculler
    ChelseaSculler Member Posts: 73
    edited May 2018

    Just off the phone with the RO who was all "hey, you missed your appointment yesterday!" The appointment no one told me about? That one? I'm really beginning to wonder about her office—this is not the first time I've had a problem canceling/scheduling this set-up appointment. So she has me reorganizing my entire afternoon to get in there today. Doesn't exactly feel like patient first!

    On the upside, this is the new, no-tattoo machine that she didn't mention when I first met her. My surgeon mentioned it last week when I went in regarding the axillary web cording I have. So that was a worthwhile visit in two ways, I guess! (I object to the tattoos purely on a 'why add insult to injury' standard—if there is a less permanent solution, why not do that?)

    hmmm....perhaps I should have put this in Rants!

  • nonomimi5
    nonomimi5 Member Posts: 434
    edited May 2018

    Started my rads today. I am doing hormone therapy after the rads. It is uncomfortable holding up the arms on the table...so I am listening to an Audiobook during the session. Anything to keep my mind off the process. Since I am doing the 16 session accelerated therapy, I am assuming the dosage is stronger and harsher on the skin. I am not taking any chances and putting on loads of cream. It helps to put on a thin cotton t-shirt that absorbs the oily cream and the sports bra over the t-shirt, and wearing a loose shirt over it.

  • GreenEyes81
    GreenEyes81 Member Posts: 389
    edited May 2018

    16??? I would suck it up and take that one. I headed in for one more "practice" and start tomorrow. Asking to day if there is an option to speed it up/reduce sessions.

  • nonomimi5
    nonomimi5 Member Posts: 434
    edited May 2018

    Yes. I am grateful that I qualified for the accelerated session. Good luck to you! Let me know what they said.

  • GreenEyes81
    GreenEyes81 Member Posts: 389
    edited May 2018

    Well...I do not qualify for 16, thats for sure. Sticking to 33, but they were able to start me today instead of waiting till tomorrow. And then over the next few weeks I will go in twice in one day so I can shave off 2 or 3 more sessions. I can't move to the house we bought out of state until I finish. lol Plan on hitting rads in the morning and driving out of town.

  • GreenEyes81
    GreenEyes81 Member Posts: 389
    edited May 2018

    Oh...has anyone been able to feel the "burn" the first day? I didn't feel it "happening"...but I could feel it by the time I got the car.

  • ChelseaSculler
    ChelseaSculler Member Posts: 73
    edited May 2018

    I had my set-up session yesterday afternoon and was given the card for the Music Therapist so they can make me a playlist. But apparently I can't just listen to a podcast? Nonomimi, how are you listening to your audiobook? Maybe I can use that as a starting point to discuss with them. (Although I just looked this up and it turns out this is a big thing at my facility—"Music therapy addresses the psychological well being of patients with cancer by directly influencing the perception of RT as being less intrusive leading to a sense of ease throughout the entire treatment trajectory. The resulting improved patient treatment compliance indicates that patients experience lower anxiety and distress during the initial simulation for radiation therapy imaging when music psychotherapy beforehand." So...no podcast?)

    I've been scheduled for 8am daily starting next Wednesday—keep your fingers crossed that the news out of ASCO this weekend is favorable for me to do that so I can finally get this done with!

  • nonomimi5
    nonomimi5 Member Posts: 434
    edited May 2018

    the technician told me some people listen to music on their Iphone. So I listened to an audiobook on my Iphone with a small speaker attached. They let me put it at the end of the bed with my shoes. I'm sure music therapy is nice, but I wanted to try to zone out and have something to look forward to at each session.

    Praying for you this weekend.

    Mimi

  • MAC58
    MAC58 Member Posts: 60
    edited May 2018

    Hi all, I am joining you in the June group, even though I am still waiting for my oncotype score to come back. It's due sometime during the next 12 days. I am proceeding as if the score is back and low, my simulation can be scheduled as soon as I know and then starting hopefully soon after that. Due for 20 rad sessions on breast and lymph node area.

    My RO said just don't wear deodorant on my left side when I come in and they had no other criteria about it, they did say that the hair wouldn't grow under that arm any longer...so saving on razors in the future😁

    Big family trip coming up, have to be good for August 4th! So much waiting...


  • nonomimi5
    nonomimi5 Member Posts: 434
    edited May 2018

    Greeneyes,

    I finished my second of 16 accelerated session today but I do not feel a burn. I made sure it is very moist before i sleep, and do not take a shower in the morning before b/c I am not allowed to put cream on 4 hours before the rad. I take all the cream with me to the rad and put them on after as I am dressing. When I touch the breast, it is warmer than my non-rad breast, but I don't feel a burn. Hope you are feeling better.

    Mimi

  • Kelligirl5
    Kelligirl5 Member Posts: 81
    edited June 2018

    Met with the RO today for my consult. I qualify for the 16 accelerated treatments thank goodness!! Actually really liked him and his office staff. He took the time to actually get to know me, not just discuss my treatment which was nice. I had some hard dates for things like my daughters orientation and a big family trip at the end of July. Knowing that he took me back and did my initial setup for me right away instead making me schedule it next week. I should get a call to come back in for the second simulation next week and start treatments right away so I can be done in plenty of time! He said the two days in the middle of treatment I can come in and do two a day to make up. I could be done potentially by 4th of July! I am so hopeful it holds true!

    Medical Oncologist said he has no real treatments for me outside of the radiation. So no hormones or any other drugs which is a relief I think!

  • nonomimi5
    nonomimi5 Member Posts: 434
    edited June 2018

    Kelligirl,

    That's awesome! You must be relieved. Good luck!

    Mimi

  • GreenEyes81
    GreenEyes81 Member Posts: 389
    edited June 2018

    Since they squeezed me in to get started a day earlier yesterday, I just got to meet with the nurse and get all the lotions today. I used it right after in the dressing room and I have no burning like yesterday. Mine was mild..but they gave me extra stuff just to be on top of it rather than waiting and needing it later which was nice.

    Also found out....that those with a mx can have the "burning" sooner...even day one. The skin is different and we have much larger scar lines. That being the case, mine is even longer. I had the mx in August and a 2nd surgery for another tumor May 2. So I'm up to about a 10 inch line cross my chest. The last one they just made it longer..not a "new" incision.

    31 to go!



  • nonomimi5
    nonomimi5 Member Posts: 434
    edited June 2018

    Greeneyes,

    Glad you got the lotions and it's better, now. Hang in there! One day at a time!

    Mimi

  • ctula
    ctula Member Posts: 6
    edited June 2018

    GreenEyes81,

    I did feel the burn during my first treatment, I'm getting use to it. They gave me steroid cream to put on right after the treatment which has helped a lot. I also bought some super soft sheets for sleeping. Today will be treatment 6 of 33. getting closer.

  • GreenEyes81
    GreenEyes81 Member Posts: 389
    edited June 2018

    That is great to hear ctula!

  • PaulaAtlantaGA
    PaulaAtlantaGA Member Posts: 99
    edited June 2018

    Hi, All,I

    And especially Greeneyes and MissMelissa. I didn't get tatoos but rather a marker X and something over it that supposedly allows you to shower, etc. But the one under my right breast (had DMX but R axillary nodes) has already wrinkled up. I figure it's their problem . . .

    I can't recommend PT enough. I was eager to work on myself but didn't want to do the wrong thing. In Atlanta, there's an amazing place called TurningPoint that does PT and Rehab only for breast cancer. I got an anatomy lesson in lymph nodes and circulation, a wonderful massage with instructions about how to help myself, and some basic stretching exercises. My rib just under my right breast has been killing me, and now I know how the surgery caused that and what to do. I don't get my practice radiation until Tuesday and begin my 28 sessions on Wednesday, June 6.

    I'm grateful for all the information here. I was TNBC so I'm not taking any hormone blockers. I am scheduled to begin Xeloda after radiation. Emu oil, which they use at TurningPoint, really helps my skin and allows me to work my cords in my right arm.

    Ctula - soft sheets have been an indulgence of mine as I've grown older (now 64). I think they are so worth it! For chemo, DMX, radiation, and more chemo, I got a new bed that allows me to raise and lower my head and feet. Priceless those first three weeks after my DMX.

    Be well!

    Paula

  • GreenEyes81
    GreenEyes81 Member Posts: 389
    edited June 2018

    Well day 3...going to bed at 7:30. Just tired...but have been up late a lot this last week. However, 2nd night in a row I am nauseated. Of course they told me it wasn't possible at rads today. If they had been mean about it I might take a dang research paper to them saying otherwise....

    Certainly worse things out there than this...so onward we will go. I have really been trying to cut back on wine...this is helping! Gotta look at the positives.

  • mwaucker
    mwaucker Member Posts: 19
    edited June 2018

    Good evening everyone! I am about three weeks away from starting rads so I'm trying to start processing what that means for my day-to-day routine. For the first 11 of my 20 treatments I'll be getting rads in the afternoon and then heading home right after. However, for the last 9 treatments I'll be getting rads at lunchtime and then heading back to work. That's the plan anyway. I'm not sure how to handle dressing for work if I can't wear an underwire bra (I NEVER go without an underwire) and I have to be all lotioned up. Does anyone have any suggestions for VERY supportive bras that can be worn during rads? What about how to dress for work in a business casual environment? My employer and boss are being AWESOME about everything and I know they will not care if I'm a bit “under dressed" for a couple of weeks. However, I have to be somewhat presentable and don't want to ruin all my “normal" work clothes with lotion. Also, I live in the south is it is HOT & HUMID already. (Ugh, just the though of being lotioned up under my clothes with the humidity off the charts makes me feel gross!). Anyway, I'm looking for any & all suggestions and advice you may have! Are there recommendations for a “lighter" daytime lotion and maybe a heavier cream to wear at night? How has everyone else handled rads while working? I'm worried about fatigue as well. I don't have an enormous amount of leave so I'm trying to be conservative in my use of it, but I have a 5 year old so I pretty much exist in a constant state of fatigue already... Hurray! I'm telling myself it's only a month...I can do anything for a month.... Happy Friday night to all!

  • nonomimi5
    nonomimi5 Member Posts: 434
    edited June 2018

    Mwauker,

    It sounds weird but I wear a very soft and thin cotton undershirt under my cotton sports bra that I bought on Amazon. The bra is similar to the ones I got after the surgery at the hospital. I wear a slightly baggy button down shirt over it so nothing shows. You can probably do something similar with men's cotton tank top. It doesn't leave a sticky feeling because it's very soft to the skin and the cream doesn't stain on your blouse.

  • Pumpkin68
    Pumpkin68 Member Posts: 22
    edited June 2018

    I finished my 16th treatment yesterday and have 6 boosts left. Make sure to use your lotion and aloe, Ladies. And if the girls are bigger (like mine) get the lotion up underneath the breast.. I didn't so much and now paying for it with a nasty burn... good luck! It will be over before you know it!!

  • nat_blue
    nat_blue Member Posts: 30
    edited June 2018

    Both Athleta and Under Armor have supportive bras without underwire. I wore the Athleta ones since they were also high necked and protected my area from the sun. The lotion provided by my radiology center was super thin, so really no mess once rubbed in.

    Hope all goes well for you.

  • GreenEyes81
    GreenEyes81 Member Posts: 389
    edited June 2018

    mwaucker Would it be possible to switch your schedule around? Go durning lunch in the begining then afternoons and home on the last half? You shouldn't much symtoms in the begining...but you are going to be trying to work when they may be kicking in.

    Also the lotions my MQ gave me are "lighter" right now...I have back up stuff for when my skin changes which she said are the "greasy" one that I may want to were old shirts with.

    As for being in the South...good luck.

  • Kelligirl5
    Kelligirl5 Member Posts: 81
    edited June 2018

    I hadn't thought about the looser button downs! That's actually a great idea and to use the tanks underneath! Working in a male dominated office I've been wondering how to "hide" my situation and I think this would actually work perfectly. I might have to start looking for some short sleeved button downs this week. I found a supportive, molded wireless bra at Soma. I'm larger so finding bras that hold them up without a wire is tough! These actually make everything look normal under my clothes. The one I got from the hospital is actually a bit to big now and isn't really supportive.

  • nonomimi5
    nonomimi5 Member Posts: 434
    edited June 2018

    Kelligirl

    I didn't feel much fatigue during my first 3 rads this week. But last night, I was really tired and I slept for 9 hours today. I know your rads are coming up and I wish you the best of luck. I have a small bag for rads that I keep in my car with creams and a small speaker to listen to an audio book during the process. The whole process takes only about 20 minutes but laying down with my arms up makes me want to itch (it's psychological) so I have to zone out with a book. My skin looks fine so far.

    Good luck. You're going to be fine and your life won't be interrupted. The men at your office won't even notice what's going on...except for your new button down shirts!

  • GreenEyes81
    GreenEyes81 Member Posts: 389
    edited June 2018

    I would just add...if you are on a 33 treatment plan...you will not have time to listen to a book. :) My son timed me the other day 2 1/5 min and I was done.

  • nonomimi5
    nonomimi5 Member Posts: 434
    edited June 2018

    LOL. You're right - the actual radiation part must be about 3-5 minutes but it feels longer and I put the audiobook on before I get on the table. Maybe they spend 5-10 minutes setting me up, but it just seems longer when I am holding my hands up and told to not move. I feel like somewhere on my head, face, body is always itchy, even tho I know it's in my imagination. So the book really takes my mind off it and I look forward to listening to it. Maybe I get thru 1 chapter in the 10 minutes I am on the table.

  • Puzzlewoman
    Puzzlewoman Member Posts: 171
    edited June 2018

    I’m starting with actual treatments on Monday (20 total). Trying not to think about them too much, but getting nervous. The first day is at 2:40, but pretty much every other day is at 4, so I’ll go after work.

    Sending good thoughts to everyone else here

  • nonomimi5
    nonomimi5 Member Posts: 434
    edited June 2018

    Puzzlewoman,

    Good luck next week. The actual process is actually very easy when you create a system. You're going to do great. I started 4 days ago and everything was fine. I got really tired last night and slept 9 hours and took a nap today. So I think I can suck it up during the week and sleep more on the weekend. I hope everything goes well for you, too.

    Mimi

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