January 2018 RADS group

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  • VL22
    VL22 Member Posts: 851
    edited December 2017

    My place does the tattoos, but not fluorescent

  • OCDAmy
    OCDAmy Member Posts: 873
    edited December 2017

    I asked my techs today about the tattoos. They are a light pink and can be seen with a special light they use, looks like a black light. They started using them about a year ago so women wouldn't have a tattoo they would always be able to see. They said they are alsobetter for African American women too because the black tattoos are difficult to see on their skin. She said cancer centers may not have them because they are expensive.

  • Anonymous
    Anonymous Member Posts: 1,376
    edited December 2017

    Tpralph, Enjoy your cruise! Good for you. I have an 11-night one planned for the Panama Canal in April. My physical med dr told me no hot tubs or saunas and to not ever cut the cuticles for risk of infection. Those will be changes for me.

    If it helps anyone, I had all axillary nodes removed 12/1. Physical Med Dr (one of the tops in Chicago for Lymphedema) showed me a very easy exercise (2 ways) using a bar. I had a thick carboard tube (like for shipping a document that needed to stay rounded vs folded). Lie down on the bed with your head on your pillow and lift with both arms as high as you can over your head. Hold for 10-15 seconds. Repeat multiple times. Also, stand with hands on tube/bar/cane/old broomstick handle and do the same over your head. It's amazing how my range of motion is getting back more quickly doing these exercises, and how you can stretch the affected arm when you have help from the other. :) I am assuming this will be great during rads.

    I was told I would be tatooed for my Rads. There is a video I have been told to watch, which I haven't yet. I will before I go on Jan 2nd.

    Sounds like everyone is doing well. Love that this will be easier than chemo. Since I am now on the upswing from my last surgery, I feel more energized to get this behind me and get going.

    I, also, haven't noticed any crazy SEs from the hormone therapy. I do notice some joint aches at times. A hot tub would sure help that. ;)


  • Lewhy
    Lewhy Member Posts: 54
    edited December 2017

    Hi all, this is my last weekend before starting rads on Wed. I am going to use a lot of lotion until then, a humidifier and drink lots of water. I want my skin to be in the best condition before hand. Tpralph, good to hear you aren't having any SE other than hot flashes on the tamoxifen. I am really worried about starting that! Down, you were asking about tattoos? I was told you wouldn't be able to see them so I just let them do it, but I wish I had asked about markers because I think these tattoos look like blackheads, yuck

  • Georgia1
    Georgia1 Member Posts: 1,321
    edited December 2017

    Hello everyone! I just finished RADS last week and wanted to pass along the notes I got from my Johns Hopkins team since it seems to be the only place that writes instructions down! I have done very well so far using calendula cream I bought at the hospital alternating with Miaderm, which contains both calendula and aloe. Best wishes to everyone!

    image

  • PVM
    PVM Member Posts: 136
    edited December 2017

    Thanks so much for sharing your notes Georgia its very much appreciated & yay on being done with what sounds pretty minimal SE.

    Kim - thanks so much for the LE info exercise, i am worried as well of ending up with LE as i have had 14 nodes removed. I am glad you are feeling alot better & are getting more energy esp after surgery. Sounds like you have a wonderful Panama vacation planned to celebrate life & i am sure you are counting down to be in gorgeous paradise. I love traveling & this year has been hard not being able to travel or enjoy the sun, like you things have/will change for me in the new year but i am grateful to have life :)

    Ladies to those of you whom have been tattooed or will be tattooed i have 6 little green dots & Paulette like you as i have freckles not that many but a few it gets lots in the freckles lol They do mark me up though every day when i go in with a green marker, they tell me all the time don't rub it off but when i shower it comes off a bit so every day they draw on me again, i feel like a giant map lol So far so good ladies i have 7 down. I am starting to feel a bit tender on my breast & under arm. No red yet mind you i put cream on 2 - 3 times a day, i am using Glaxal Base. I also put cream on my back as per my RO whom told me as you get zapped don't forget your back shoulder too as that gets some of the zapping. I am off rads till Wed as in Canada we have Monday & Tuesday off so gives my skin time to heal from the zapping.


  • gigibee
    gigibee Member Posts: 192
    edited December 2017

    Hi all,I finished treatment 9 today but I will be going well into January. The two Holidays are pushing me out a bit. No major SE’s so far. Using Calendula right after treatment and covering in aquaphor at night . I am doing 23 prone whole breast and 7 boosts. No tattoos so far, may avoid them as my stickers are staying put.

  • CindyNY
    CindyNY Member Posts: 1,022
    edited December 2017

    Hello January ladies! I'm joining this group, thanks for starting it.

    I'm starting accelerated rads Tuesday, 12/26. I've gotten 2 tattoos, little tiny black dots, and a black Sharpe 1" line drawn down my breast bone - covered with some type of clear tape. The tape really protects the marker, it was put on 12/13 and is still good.

    I haven't started putting lotions on my chest - should I? My RO instructions are for 98-100% Aloe gel, and Aquaphor. I've purchased Crystal roll on deodorant, and Dove liquid for sensitive skin. I'm also thinking of buying some inexpensive white cotton tees...Aquaphor is greasy and my night shirts are spaghetti straps.

    I've posted on the Dec 2017 site. I have an Oncotype score of 19, and MO suggested chemo. But she's now on vacation. SO I've chosen to start my rads, which I'll have completed 10 of 15 by my MO appt on 1/9. Not sure if I'll do chemo; 4% decrease in reocurrance vs side effects of chemo. Whole other ballgame.

    RO hasn't mentioned any boosts, so if all goes as planned I should be done 1/17 or so. At Tuesdays appointment I'll also see my RO, I'll ask about boosts.

  • PauletteK
    PauletteK Member Posts: 2,205
    edited December 2017

    PVM, I didn’t know anything about rads on our back, just wonder how they do that. I have been using Aquaphor since I was on taxol due to dry skin , I got used to using Aquaphor so I don’t mind the greasy anymore. Ifinished 12/30,almost half way there. Yay!!!


  • DownNotOut
    DownNotOut Member Posts: 99
    edited December 2017

    Welcome to the new ladies on this thread! I just got home to a quiet house since the hubbie and kids are having family Christmas 2 hours away but I'm working this weekend and missed it. So I wanted to check in with you, my new friends who I think about all the time and appreciate so much!

    So I guess I'm being a baby about it, but I just do not want the tattoos. I wonder if they have different colors? I have a fair/normal white gal complexion without too many freckles and my RO showed me one he gave himself on his wrist that was kind of medium blueish. I'm probably worrying about nothing and need to get over it, but having little blue dots on my chest for the rest of my life does not thrill me.

    I have another 1 1/2 weeks before I begin RADS and am using my Dove cleanser and Aquaphor 2x/day. It is a little greasy, but I love the way my skin feels once it has soaked in! Plus it is easier to do the LE massage with the ointment than without it, and my surgical scars are looking and feeling really good :) With all the presents hidden in my closet, I have misplaced my Toms of Maine deodorant I bought last week!

    Kim, I am thankful you shared some LE exercises. I do not have a referral to a LE therapist and have been winging it on my own and will begin with those tonight. I have the perfect tube from some wrapping paper I finished off last night! And Georgia, thanks for sharing the instruction sheet. Hopefully I will get one when I go for my simulation this coming week, but if not, then I have yours as a backup.


  • JenRuns
    JenRuns Member Posts: 350
    edited December 2017

    DownNotOut, I completely get your feelings about the tattoos... I was so upset about the idea, and I have a tattoo on my hip! I think it's the idea of having something so permanent on my body, not by choice but because of this diagnosis. I will sayv, however, after I got mine, it became a non-issue. It's so incredibly small that I don't even notice it.

    And I have to go back to be resimulated, since they decided to do my exchange surgery in between chemo and rads. Hoping I don't need another tat

  • CindyNY
    CindyNY Member Posts: 1,022
    edited December 2017

    DownNotOut- your feelings are your feelings, if the tattoos bother you then they do. Maybe you can research having it removed, that way you know its not forever. The ones they gave me are so shallow, I'd bet they're easily removed.

    Like JenRuns, I too have other tattoos. The body mapping ones don't compare - no pain, and just under the surface. Good luck, and happy holidays!

  • PVM
    PVM Member Posts: 136
    edited December 2017

    DownNotOut i agree with the ladies out there, if the tattoos bother you then maybe see if they can do something else like markers or anything else. When i got my six they did not hurt at all & i was like you thinking oh great now i shall have marks that everyone can see but to be honest they blend in with my freckles that i already have & they are in places that are not exposed except 1. I do agree though its something that marks us for life but ti think this journey has already marked/changed us for life.

    CindyNY - i started to put lotion on my skin from day one of rads so i would suggest to maybe apply the lotion once a day before you start to keep your skin moist. So far i am doing okay i have had 7 sessions & now am starting to feel a bit tender. No red just tender. I am not getting tired & appetite unfortunately seems to be the same, what can i say i love food lol

    Paulette - the tech told me to apply in my back as i guess they start my machine on the side of my breast & he wants me to get all sections of my skin. I know i was thinking this is strange but oh well its just a bit of extra cream on my shoulder blades. Sending you big hugs that you SE do not get worse. You are halfway there wooohhooo the home stretch is almost there :)

    Kim thanks again for the exercise tip i have added that into my daily routine as well :) Though i would also share a link of stretches i have been doing every day for those of you that may be interested. Have a great day ladies, happy holidays & Merry Christmas

    https://www.youtube.com/watch?v=mnO02bKMLkA


  • DodgersGirl
    DodgersGirl Member Posts: 2,382
    edited December 2017

    PVM- I had 28 rads in Oct/Nov and my back also turned pink then tan. I applied lotion to my back (which rad techs and RO nurses reminded me to do)

  • PauletteK
    PauletteK Member Posts: 2,205
    edited December 2017

    PVM, I do put lotion on my back every night, but I can't do that right after radiation, arms aren't long enough to do ... Hahahaha! I check my back daily, no color change at all thanks God. Thank you for the link, great exercise!

    Skin is holding up, after a day rest, it is back to normal, next week will be only four days zapping then another three days off which is not bad. I was tired yesterday glad to have extra days to recovery.

    Merry Christmas to everyone and enjoy the days with your family.


  • DownNotOut
    DownNotOut Member Posts: 99
    edited December 2017

    Merry Christmas to all of you and may you have a blessed and special day! I woke up thinking about all of you and I just really want us all to have a good day. It can be challenging because of the stress that comes along, sometimes surprising us, but I am going to take a deep breath and dive in to the joy of it all and let go of the rest 🎄❤️🎄❤️

  • Georgia1
    Georgia1 Member Posts: 1,321
    edited December 2017

    Thank you! Happy holidays to all.

  • PauletteK
    PauletteK Member Posts: 2,205
    edited December 2017
  • Anonymous
    Anonymous Member Posts: 1,376
    edited December 2017

    I hope everyone had a delightful Christmas! We had a couple of inches of snow on the 24th, perfect. It is currently 3 degrees. Brrrr. Staying in today!

    Thanks for the youtube link of stretching exercises, PVM.

    I need to read all my Rads instructions, since I go a week today for the mapping/planning. I guess until I go, I won't have much input about the skin changes and tatoo issues.

    If it helps, because I noticed I cannot reach my back for putting on lotion (and my right arm won't reach the way it used to), I ordered a lotion applicator, much like a loofah back scrubber on Amazon, last night. I didn't even know they made such. I was wanting the loofah for shower but came across the lotion applicator with a long handle, so I ordered both. I figure that would be helpful going into the Rads therapy.

    I will say the exercises (and time) have helped with getting more range of motion daily. I do hope they will help each of you!

  • CindyNY
    CindyNY Member Posts: 1,022
    edited December 2017

    I posted on Dec rad: today was my first treatment, I'll go thru mid January. Took a little longer because they did xrays while I was on the table. But tomorrow and the next treatments should go quicker.

    I got home and slathered on aloe, very cold indeed! 14 more to go, and I forgot to ask about boosts. I'll ask tomorrow.

    Have a great day!

  • Lewhy
    Lewhy Member Posts: 54
    edited December 2017

    Hi, I go for my simulation and then first treatment tomorrow. I am a little nervous because the very top of my lumpectomy incision is still red. I don't know why I am so apprehensive about starting radiation. I didn't feel this way about the biopsy or lumpectomy. Weird, huh? Oh well, one step closer to being finshed. I hope everyone has a good week

  • PauletteK
    PauletteK Member Posts: 2,205
    edited December 2017

    Lewhy - I was nervous on my simulation also, it takes good 45 to an hour long but don’t worry would not be painful at all.

    Cindy you are doing 15 only, good for you.

    Today I did my 13/30, 17 to go!!!


  • Lewhy
    Lewhy Member Posts: 54
    edited December 2017

    PauletteK, thank you. I think radiation is making it real. And good for you, more than half way there

  • hhuey
    hhuey Member Posts: 151
    edited December 2017

    Kim nice to see a familiar face in this group..I finished my simulation, will do the final test Jan 11th and start Jan 12th..I will have 30 sessions...I've already completed 4 dose dense AC 12 Taxol/Herceptin/perjeta and had my BMX on Nov 30th...so not looking forward to rads..I've hope like chemo it goes by quickly..

  • PauletteK
    PauletteK Member Posts: 2,205
    edited December 2017

    Hi hhuey, I haven’t seen you for awhile, nice to see you here. This will be the last step of this journey. I’m doing 30sessiins also, on 13 right now, tomorrow will be my 14,end of this week I will be the half way there. This is easier than chemo and it will go fast also.


  • PVM
    PVM Member Posts: 136
    edited December 2017

    hi ladies today got my 8th zap & by Friday i shall be halfway done woohhooo!!!! Skin is holding up okay so far which i am totally grateful for, I am applying Glaxal Base on all my breast, side & back & doing it twice a day at least. Im also doing my stretches (the ones i posted above) twice a day, in the morning when i wake up & before i go to bed to see if LE will stay away. Its a crap shot as to whom gets it but hey at least i am trying to keep it away. Hope you all had a wonderful Christmas filled with lots of blessings & great food/family/friends. I have a feeling ladies that 2018 will def be a great year for all of us i am wishing nothing but good health to all of us.

  • DownNotOut
    DownNotOut Member Posts: 99
    edited December 2017

    Kim , be careful with your lotion applicator- if it is rough it may damage your skin more than it helps (we aren't even supposed to use a washcloth). I would check with your RO before using it.

    So I got thrown for a loop today. I was walking out of work today to head to my simulation when my MO (who I met last week) called and said in no uncertain terms that he did not want me to have treatment where I was heading ( a guy he works with!) but that he wanted me to use the doctor at the big university nearby I had tried to get a second opinion with (but was unsuccessful due to frustrating scheduling issues on her side)... that her true beam machine was better and that I could do a five day hypofractionated course instead of a 20 day with boosts or a conventional course, which we had been looking at. I am confused. For my rather "run of the mill", early-stage breast cancer, I was assured that it really didn't matter what kind of machine my RO used, and to go with the person that I liked the best, but today the MOis not mincing words. He said that he spoke with this second doctor on the phone, and he also called a friend at M.D. Anderson, and they all agreed with this different plan. I canceled my simulation but I feel like a jerk. Can it really be possible that a five day course with a fancy new machine is all I will need? I have an appointment in the morning with her so we will see what this new RO has to say. I am reeling just a little bit.

  • OCDAmy
    OCDAmy Member Posts: 873
    edited December 2017

    Down, 5 treatments sounds fabulous! Let us know what they say.

    I'm on #20 of 28 so I am almost finished but will be with all of you into the new year. I was fine through 14 but since then I have been really red.

  • HersheyKiss
    HersheyKiss Member Posts: 550
    edited December 2017

    DownNotOut, my RO told me that a hypofractionated whole-breast radiation schedule is 3 to 5 weeks. I know nothing about a 5-day radiation treatment, so I am of no help there. Is this treatment a clinical trial that you'd be entering?


  • PauletteK
    PauletteK Member Posts: 2,205
    edited December 2017

    Down, I’m no expert in BC nor radiation, trust your MO that’s all I can say. I’m with Hershey I never heard of five treatments, but my SIL had 10trearments for her bone and it was pretty intense zap she had.

    PVM, forgot to ask you do you wear your sleeve regarding LE?


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