Starting Radiation November 2017

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  • tlfrank
    tlfrank Member Posts: 199
    edited November 2017

    Georgia1 - I'm doing my treatments as late in the day as possible for those exact reason. This way I can go home right after and rest if needed. I work in the dental hygiene department of a community college and I don't think I'll want to go back and deal with students or their patients when I start to feel the fatigue.

    AngeliaJL - I find it really interesting that some of us are face up and some are face down. I'm face up in a mold with my arms grabbing handles behind my head.

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  • Linwentz
    Linwentz Member Posts: 133
    edited November 2017

    JL, love the cabbage treatment idea! I heard about it for the first time from my rad techs Last week. Cabbage is on my shopping list! I too love a blend of natural treatments with traditional medicine. Will post how it goes

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  • sunnyjay
    sunnyjay Member Posts: 238
    edited November 2017

    Just want to chime in here, as I am starting rads today. I'm doing 28 sessions so will be done before Christmas. Yay for that!

    I had my simulation last week and wasn't given any prep instructions. The tech told me that the nurse would give me additional information at my first session. I guess I was expecting to get an informational handout that lists side effects and/or what to do for relief, etc. like I've gotten for every other treatment after diagnosis. My RO said that I can use pure aloe vera (at least 98% or higher). I've also been getting over a cold the last week so haven't made it to the drugstore.

    I am most worried about lymphedema. I have a bit of swelling from my left hand to my forearm and use a compression sleeve and glove daily. My RO said that a SE of rads is swelling so I'm hoping my LE doesn't get worse. I was lurking in the Oct. thread but don't recall reading about anyone's issues with LE.


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  • Castigame
    Castigame Member Posts: 752
    edited November 2017

    Sunnyjay, 

    Please allow me to chime in. 

    About cooling lotion, whether it is  green tea, aquaphor, aloe or  miaderm, put it in fridge 24/7.  Your  entire upper body will get so hot anything that helps to reduce the heat is recommended. and no top as much as possible.  

    SE wise, you may feel new subtle impacts such as light dizziness, more freckles on your face.  Except fatigue which may hit hard towards the end, none was  even moderate for me. Fatigue came as short bursts of  sudden sleepiness ( a few secs)   for first half.  For the second half, I needed a nap every day.  

    I have LE and felt swelling during rads.   I could not use my lymphedema pump so I panicked briefly.   Wearing sleeve at least  10  hrs per day instead of the usual 8 hrs helped quite a bit. I made sure to   walk leisurely  min 30 min every day.




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  • OCDAmy
    OCDAmy Member Posts: 873
    edited November 2017

    SunnyJay I am worried about lymphadema as well. I have not had any swelling so far but am scared to death that the radiation is going to cause lymphadema. That is going to be one of my first questions for my RO when I meet with him. I am hoping he can tell me how to avoid it. I see you also have tissue expanders, are you concerned about how they will hold up during rads?

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  • IntegraGirl
    IntegraGirl Member Posts: 147
    edited November 2017

    I finished 2/16 rounds today. This whole thing has been so emotionally draining this year and I find the daily treks to the hospital wholly demoralizing. Yes, the entire first 2 days I've done so far. Sigh.

    After finishing primary chemo in Aug and then finally feeling better after my Aug 31 surgery in October and getting back to being myself a bit (I even did a hearing last week!) I feel like I got smacked over the head with being a cancer patient again this week. Every bloody day for 3 stupid weeks, go to the cancer centre, put on the cancer patient gown, recite my name and birthday, and be viewed and treated as a cancer patient instead of a person who just happens to have cancer.

    Just feeling pretty done with the whole thing at this point

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  • tlfrank
    tlfrank Member Posts: 199
    edited November 2017

    IntegraGirl - ((hug)) you can do this. You are a person who just happens to have cancer and anyone who makes you feel otherwise is in the wrong line of work. Hang on, YOU GOT THIS! You have the support of everyone here.

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  • lifechoices2017
    lifechoices2017 Member Posts: 242
    edited November 2017

    IntegraGirl; we are ALL sending really tight squeeze hugs to you. WE have cancer; but Im praying that it does NOT have US! Im thankful for this sight. As we've stated somethings you want to know; some things you dont. I have yet to start my rads and instead of counting those days; ive actually been counting down to appts. With all that said; you got this! IT DOES NOT HAVE YOU... it's cliche' to say you dont know how strong you are until you have to be; but LORD knows thats the truth. I dont know if this will help you, because its never too late to start. But when I was diagnosed; I started a journal. Each day I write in it; how i feel, who i talked to that day, what my emotions are like and I also write out my prayers to God. Ive taped quotes, pictures and sometimes just a THANK YOU LORD just to get me through the day and it helps. Ive shared with my friends/family about this journal and one day its going to be a book; with some tearful stories and OMG so many funny ones (I'll just have to rename my cast)... Dont get me wrong there are days I want to scream and just hide under a rock, but in my mind Im like...if God is working it out, then thats one less job I have to do so I just keep it moving and say 'one day at a time'! ..Im single; live alone but I have the best support of friends and family EVER! I pray that as your journey continues that you are strengthened and I hope in some way that this site and our words of encouragement will lift you.

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  • OCDAmy
    OCDAmy Member Posts: 873
    edited November 2017

    I have my appointment with my RO on Monday and they just called and said they also plan to do my mapping as well. They also said before I start rads I have to get a pulmonary function test, has anyone else had to to that? Also a pregnancy test...LOL! No way I am pregnant. I am getting really nervous now.

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  • tlfrank
    tlfrank Member Posts: 199
    edited November 2017

    I'm 54 - hence the no pregnancy test - however they did ask if it were possible. LOL No pulmonary function testing for me either

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  • CEL82
    CEL82 Member Posts: 12
    edited November 2017

    Hi! So happy to find this group. I was wondering if anyone has experience with having radiation after DMX and implant exchange for a recurrence???

    When you have implants in how do they radiate the whole breast?

    Meeting with the RO tomorrow for the 1st time!

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

    I just got back from my simulation (or as I liked to call it, my "fitting") and thought I would post an update. First of all, the CT scan machine was blissfully quiet compared to the noisy MRI machine! And the technician was great about explaining things. I will be getting rads lying on my stomach (prone position). Disappointing: she said at least 20 minutes per session when the doctor had said 15 minutes; she said 19 treatments while the doctor had said 15; and they don't want to start until after Thanksgiving since they are closed that Thursday or Friday. Hmm. It is so weird that while I have been dreading these sessions I now want to start ASAP and get them over with! Guess I will just have to chill out for a while. She did schedule my "dry run" for the 22nd, and I can ask the RO all my questions then. And on the upside, the facility has a lovely waiting room and nice robes. Maybe we all just pretend we're going to the spa a lot...

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

    I did not get a pulmonary function test or a pregnancy test. Good luck!

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  • lifechoices2017
    lifechoices2017 Member Posts: 242
    edited November 2017

    Georgia1... I go for my RO appt tomorrow. Guessing I'll be doing my fitting as well. So 20min sessions? How is that determined? Just want to have an idea or what questions to ask my RO. I too am thinking my sessions will start after Thanksgiving, but who knows. I guess I really just want to find out how many, for how long and as you said just want to get them started and count down to zero! I've ordered my miaderm and will get aquaphor and green tea :)

    I guess i will be starting my 'spa' days soon!

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  • Brightness456
    Brightness456 Member Posts: 340
    edited November 2017

    I had my mapping yesterday and found out that even though I had chemo, I can still do the Canadian method, which means 16 treatments instead of 33! I’m so happy about that. Like you integragrl, I want to feel like my normal self again and now even though I’ll be on herceptin for a year I feel like I can see the light at the end of the tunnel.

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  • lifechoices2017
    lifechoices2017 Member Posts: 242
    edited November 2017

    Brightness456 that's Great! I'm hoping I'll have reduced rads as well; clear margins, nodes, genetic and MammaPrint negative...

    Will you have the 2 sessions each day?

    I Know that once my rads are done I'll be on tamoxifen... for that prescription filled after my MO appt Monday.

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  • Brightness456
    Brightness456 Member Posts: 340
    edited November 2017

    I only do one treatment each day for 16 days. I think the twice a day regimen is only 5 days long. If my RO did that, I’d really,really try to go that route, but I’m still so tickled about having it over with well before Christmas.

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  • lifechoices2017
    lifechoices2017 Member Posts: 242
    edited November 2017

    Brightness456 that's Awesome! Funny to type rads being awesome...but really that is! I too would be soooooo ready to start and be done. I'm praying for the same...less is more...lesser sessions but more than enough to 'heal'! Can I ask how long your 'actual' rad will be. I've seen some post 10-15 min. Others it's like 2-3 min of rays...

    I'm so happy for your abbreviated session. I already know that you got this and will do just fine!

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

    lifechoices: I wish I knew more but I don't yet. I luckily have clean margins and no lymph node involvement, so am expecting something on the minimal side. I've also been told that women in my situation should expect 40 Gy ("Grays") of radiation per dose. But all that won't be determined until the great computer in the sky reads my CT scan and mapping since "every woman is unique" is what we all hear a million times. That said, I think you ask your RO as much as you want: what kind of radiation treatment do you recommend? Whole breast or partial breast? Laying down on my back or stomach? How do you plan to reduce the radiation of my lungs and heart? How long? How much radiation? What about side effects, calendula cream, lymphedema? A good RO should spend as much time with you as you need, and hopefully you have a second option if you just plain don't like them. Hope that helps a bit.

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  • Brightness456
    Brightness456 Member Posts: 340
    edited November 2017

    I know we talked about how long the actual treatment would be, but for the life of me I can’t remember now. It took about 15-20 minutes to do the mapping and I remember them telling me that would be the longest time I would spend on the machine because treatment is less. I guess I’ll find out next week.

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  • lifechoices2017
    lifechoices2017 Member Posts: 242
    edited November 2017

    Georgia1, same here...clear nodes and margins. But ok, yeah..ive read so many post and haven't seen the same treatment yet. I guess we are all unique:) I'll be sure to ask away and prayerfully complete my rads as comfortable as possible. Good luck with yours!

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  • lifechoices2017
    lifechoices2017 Member Posts: 242
    edited November 2017

    Brightness456, yeah I've heard the full dose time is less than 5min it's the setup that takes up the time.

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  • AngelaJL
    AngelaJL Member Posts: 94
    edited November 2017

    I'm only 43 and a long way from menopause (presumably), but I didn't have a pregnancy test, either.

    My sessions take about 10-15 minutes from the time I walk into the radiation room to the time I walk out. That includes setup, aligning me on the machine, X-rays, and finally the treatment. I think the treatment itself is less than 5minutes.

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  • lifechoices2017
    lifechoices2017 Member Posts: 242
    edited November 2017

    AngelaJL, I just turned 49 Oct 28th.. they did my pregnancy test the day of my surgery, 10/19... lol I could have saved that test money for them...lololol. Thanks for the info....

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  • lifechoices2017
    lifechoices2017 Member Posts: 242
    edited November 2017

    AngelaJL, I just turned 49 Oct 28th.. they did my pregnancy test the day of my surgery, 10/19... lol I could have saved that test money for them...lololol. Thanks for the info....

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  • EmmyEdward
    EmmyEdward Member Posts: 15
    edited November 2017

    Just got home from my simulation session for my torso/"top half" - it took 1.5 hrs, which didn't even include making my mold which was done at a separate appointment last week. When they did my mold they gave me a few more tattoos, but they were able to reuse some of the tattoos from my previous liver radiation treatment. Today they drew all over me and placed a bunch of stickers. The exact number of sessions keeps jumping around but today they said 31 treatments that will take 40 minutes - this is to do the left chest wall, left axilla, left throat nodes and right axilla. By contrast my liver only radiation treatment was 6 sessions that took less than 10 minutes.

    I had some back and forth with the rad techs about skincare protocol. The physical therapist told me to use Miaderm on the treated areas starting 2 weeks prior to treatment. The techs insisted that there was no point in using any skin lotion or topical cream/ointment before symptoms presented, saying that "physical therapists do not understand radiation biology even though we've tried to educate them" and that the rad oncologist would tell me the same thing. This made me laugh on the inside because I'm seasoned enough at this point to be accustomed to conflicting instructions - and on this one I probably trust the physical therapist more than the rad oncologist! One new thing I learned about my treatment this time is that I will be getting photon and electron treatments to different areas... this matters on a practical level because my physical therapist told me to put the lotion on the skin on my back where the rays will pass through or exit and that only applies to the fields that are getting photons. I now realize I don't even know what type of SBRT I got for my liver.

    I'm also planning to wear a compression sleeve on my left arm during treatments at the recommendation of the physical therapist. First treatment is Monday morning.

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  • sunnyjay
    sunnyjay Member Posts: 238
    edited November 2017

    Castigame: Thanks for the info! This is very helpful, especially cooling the lotions/gels. I finally got a handout from the nurses prior to my mapping session on Tuesday. I work out twice a week and not getting as much walking as I should, and my RO emphasized the importance of getting at least 20 min of activity every day. So I will have to work that in somehow.

    OCDAmy: Regarding the tissue expanders, my PS told me that there is a possibility that it may shrink a little. My RO didn't say anything about them. I had my first treatment yesterday and didn't have to get a pregnancy test (I'm 46 so still premenopausal). I also just finished chemo and they emphasized not getting pregnant during treatments, so maybe they just assumed I wouldn't be??

    EmmyEdward: I was told to only use aloe 2-3 times a day by the rad nurse and to moisturize, moisturize, moisturize. She said the same thing about not using other ointments until the symptoms appear and they would give me samples of the ointments at that time. My PT had mentioned starting to use the aloe a week before I started treatment, but I totally forgot. The info about applying it to your back area is interesting. I might try that.

    I was supposed to start on Tuesday, but at that appointment, the tech said they had to take pictures and they did more mapping that I thought was already done during the simulation last week. At the simulation there was only 1 tech, and at the mapping session there were 3 techs. I didn't get a treatment, so they had to add another treatment day to the end. My last day keeps getting closer to Christmas week... Boo! Anyway, I had my first treatment yesterday and they told me that the RO wants me to do bolus every other day. So today I have to do mapping for that too. My RO never mentioned this at our initial meeting, so I need to clarify this with him when I see him next week. I hope I get a treatment after they do the mapping today.

    The actual treatment seemed longer than 5 minutes. I think it's because they're still trying to get the position right. They kept moving me this way and that, then marking me in certain spots. Since they're doing my left side (heart side), I have to do a breathing technique where I breathe through my chest and hold my breath from anywhere between 5-10 seconds. I have a hard time with this because when you're lying down and you take a deep breath, your chest doesn't usually expand. It's usually the stomach. The 10 second one seemed like it lasted forever! I really felt like bursting, but I was able to hold on. I have 27 more of these... Lord, help me! LOL

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  • CEL82
    CEL82 Member Posts: 12
    edited November 2017

    I just met with the RO yesterday. He said he would start planning the mapping session. I then would have mapping next week and start the week after thanksgiving.

    He said he is thinking of proton therapy for me bc I will be getting right breast and sternum. Otherwise I will be doing the holding breath thing too.

    Interesting, he told me there was a study done with PT getting rads through the holiday season and having 3-4 treatments on holiday weeks and their treatment was just as effective..??

    Sadly I have already done my implant exchange and there is a 40% risk of the implant hardening and shrinking over 5-10 yrs. :(

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  • lifechoices2017
    lifechoices2017 Member Posts: 242
    edited November 2017

    CEL82; good morning. We must be on the same schedule. I too met w/my RO yesterday and my sessions will start Nov 27th - Dec 22nd. (4weeks). I will be doing the on my stomach rads; says that since its whole breast only he didn't want any of the SEs to bother the skin under the arm or under the breast. Doing it this way will 'beam' (lol) the breast tissues only.

    I did ask if I could start the week of Thanksgiving and he said that if i had started NEXT week he would have been ok w/me having that thurs-fri of thanksgiving week off; but since i hadnt started he didn't want me to start w/missing those two days....oh well...

    Im just glad to know that Im soon to be on my last lap around the track... prayers lifted for smooth sailing and smooth skin... the countdown soon to begin!

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  • OCDAmy
    OCDAmy Member Posts: 873
    edited November 2017

    Sunnyjay, I will be following you and it sounds like we will have a similar treatment as my tumor was on left as well and lymph node involvment. I guess I'll know more Monday when I meet with my RO and get mapping. Do the bolus treatments have worse side effects or could they damage the expander more? Guess I better start practicing holding my breath

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