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Starting radiation March 2020

A group for those starting or having radiation therapy in March.

I had my simulation Feb 21, and am now scheduled for a dry run March 4, to begin daily treatment the next day (25 sessions plus 5 boosts, 6 weeks total)

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Comments

  • ziggzmom
    ziggzmom Member Posts: 10

    Hi! I'm having my "planning session" tomorrow with my radiologist and he hopes to start treatments next week (first week in March). Current plan is 20 sessions (4 weeks) utilizing the breath holding technique.

  • cathyh1966
    cathyh1966 Member Posts: 5

    I have my planning session on Feb. 27 and will start 7 weeks of radiation about one week later. After 20 weeks of chemo and a bilateral mastectomy with tissue expanders on Jan 13, I'm ready to move on to this next phase

  • moxie32
    moxie32 Member Posts: 51

    I have my initial appointment, education, and scan on March 3.

    I am interested in seeing if I’m a candidate for brachytherapy but will find out at my appointment.

    When I initially met with RO (before surgery) she only mentioned the 20-day option.

  • tinkerbell107
    tinkerbell107 Member Posts: 289

    Hello ladies:

    I will be also be starting radiation this month, 3/9. Anticipate 25 sessions with a few boosts.

    I have 2 questions:

    MO proposed some folks stop their medicine during this time. Has anyone else heard of this? I am on Ibrance and letrozole. So far the side effect of manageable. Hence I plan to stay on the medication during radiation.

    The RT tech said I could wear deodorant, Has anyone else heard of this? Tech said this "new", but I plan to follow the 'old" guidelines just in case. I may use deodorant on my opposing arm.

    Thanks in advance for input.


  • fijiozi
    fijiozi Member Posts: 1

    Hi All, I'm new to the community in terms of posting but have found much guidance, information, and strength from other people that have posted.

    For everyone that is, will be, or has already completed radiation, I wish you continuing strength and patience with the process. It took a lot out of me, but I found that when I focused on eating better and ensuring I slept minimum 8 hours a night, I felt less tired during the radiation sessions. I am a non-caucasian, South Pacific Islander so my skin reacted differently than others. I'm sharing details of my experience below for anyone that might find it helpful.

    Starting with the first day of radiation, I developed a strict daily regimen of applying organic aloe vera gel immediately following my morning shower hich happened a minimum of 4 hours before the treatment, I did not apply any other lotion to the target area (left side), I didn't apply deodorant to that side, immediately after the radiation session I applied a ight layer of organic aloe vera get to the area (for the first 3 weeks), at the beginning of the fourth week I continued applying aloe vera gel after my morning shower, but after the treatment session I switched to applying calendula cream after daily radiation sessions. My skin began to look badly sunburned during the 4th week. During week 5, session 22, the area being treated became very tight, sore and tender. For anyone that has lifted weights, the sensation I experienced felt like I had lifted very heavy weight. During week 5 session 25 my skin started to breakdown and peel. To deal with this I applied a thick layer of prescription silverdene cream (should be available from your RO) and piled on a thick layer of aquaphor. I used the back of a plastic spoon to make the application easier. I then covered the treated area with Telfa sheets and used an Ace bandage to hold the cream, ointment and Telfa sheets in place. The worst of the skin breakdown and peeling happened during the last 2 treatment sessions and the following 2-3 weeks. I maintained the silverdene, aquafor, telfa, ace bandage routine until new skin grew in place. I took photos daily to track the progress of the skin breakdown, but also the regrowth of skin. After my skin grew back, the scar was significant for sure, but after the wounds healed I began using virgin coconut oil in hopes of repairing the skin. I think that it's done a good job. I have a Word doc with many more details if anyone is interested, just let me know.

  • flowerkid
    flowerkid Member Posts: 83

    Hey heartshaped!

    Thank you fijiozi for all the details! I hope you are faring well now.

    I have my dry run this Friday with the plan to start radiation on Monday. 25 sessions.

    Tinkerbell107 -I was told I could use regular deodorant. Though i haven't needed to in months actually! (All through my chemo) . And use Gentle unscented soap such as dove. If I need deodorant, I will probably still use Tom's.

    I am a little concerned about being just 8 weeks out of single mastectomy and still a bit sore. I plan on creaming the heck in the "square" on my body as they suggest (from arm to below the "breast", up through chest and shoulder.



  • moderators
    moderators Posts: 7,206

    Welcome, fijiozi, and thank you so much for sharing your experienc thus far! That kind of information is so helpful to others, and we appreciate your willingness to share what worked for you!

    The Mods

  • tinkerbell107
    tinkerbell107 Member Posts: 289

    .fijiozi: Thank you for sharing your detailed regime. Every suggestion helps. Who knows how my skin will react.
    Flowerkid: Thanks for verifying my RT sanity. I never heard nor read deodorant is ok . I’m not fond of Toms deodorant but it’s an idea if my underarm becomes malodorous.

    Gosh I’m dreading all of this but one day at a time Nerdy

  • Renschwa
    Renschwa Member Posts: 3

    Hi Ladies,

    Well I’m part of your group- Radiation March 2020 🍀. I’m scheduled to start Monday March 9. I have the most sensitive skin in the world- I have psoriasis, eczema, rosacea, always something going on with my skin LoL. Also very fair skinned. So nervous about the side effects!!! My RO recommended aveeno lotion, eucerin original or lindi lotion (developed specifically for chemo & radiation). Aloe gel is also good they said.I got the lindi lotion & have been applying it already. My RO also said deodorant is ok but I’m iffy so I’ll go without on the treated side. I’m doing 20 treatments (16 whole breast, 4 boosts). My RO & nurse seem great (nurse is a survivor) so I at least feel I’m in good hands.


    It was also recommended to not wear a bra whenever possible & no underwires which I don’t like anyway. I usually love bra less time but since my lumpectomy ( Jan. 27) I find I am less sore when wearing a light sports bra. I find I am sore in morning when I first get out of bed but it gets better after a few minutes. Surgeon said it’s probably fluid? (I know, another topic). I’m trying not to sleep on my surgery side but always wake up on that side uggh.

    Good luck everyone 🍀

  • moxie32
    moxie32 Member Posts: 51

    I had my initial appointment and CT simulation and my tattoos today for whole breast radiation. Since mine is on my left side, I did the holding my breath thing - no special tube or anything - and I did not have a problem. I should be starting in about 2 weeks. It will be about 20 treatments including boosts I think, but I don't know the details yet.

    They have no restrictions on what type of moisturizer to use and it's ok to use deodorant. You can use either with no time restrictions other than "not when you're coming through the door." Nothing about bras. It's ok to go and get my teeth cleaned and have dental x-rays during treatment.

  • baffledbutterfly7
    baffledbutterfly7 Member Posts: 4

    Hi everyone, I have my meeting with my radiation oncologist next week, so far I was told 25 treatments, 5 days a week for 5 weeks, question for those who started, how quickly did you start treatments after that meeting, if you had one with the radiation oncologist? Also did any of you have lymphodema, did that change anything? I finished chemo on the 17th of February, and with in the next week I started having swelling in my arm on affected side. Thank you for any advise you can give.

  • Spoonie77
    Spoonie77 Member Posts: 532

    Hi fellow RADs warriors!

    Hope you don't mind me stopping in to say hi. Hi! :)

    I just wanted to stop by and wish you all good luck on your RADS journey. I finished my RADs on Halloween in 2018. Though my experience in RADs was a "bit" rough, and I ended up with Fibrosis, LE (Left Breast and then 6 months months later the Nipple followed too), and Rib Dysfunction (Costochondritis), many others in our Oct 2018 group did just fine and so have many other members since! The odds are in the favor of y'all having minimal SEs . :)

    I was given many stretches and exercises by my Cancer Rehab PT and RO that helped me to keep from losing range of motion and manage the Breast Lymphedema that developed during my RADs treatments, which I had posted in my RADs group and I'll share here too in case anyone might find them helpful. Two rules of thumb - go slow and gentle and If in doubt, ask your team. Always.

    Oh and before I forget, there's a really great link about What To Expect During Radiation from the Memorial Sloan Kettering Cancer Institute that MissouriCatLady in her June RADs thread and she was right!! it's really full of good stuff, things I wished someone had told me before I started too. Give it a look see, can't hurt.

    Also, if you've not read this thread yet, List of what to do/get/pack to prep for Radiation Therapy, it's also a good place to go for tips and tricks on what helps during the next few weeks.

    At the end of this post, I've shared some info/sites/videos about Gated Radiation (where you need to hold your breath). I had to do this due to my Left Sided BC in order to help protect my heart from the RADs. Some of you may need this and hopefully these resources will put your minds more at ease.

    Ok, sorry to drone on. Think I'm nearly done! I sure hope all of you will sail through treatments with the minimum of SEs. This was our thread Radiation October 2018 and we discussed quite a few things that were very helpful along the way - including different creams, hydration, NAPS, exercise, etc. Maybe it might be helpful to you on your journey too.

    My best advice that I can pass on, that helped me is this:

    1) Start using Calendula or other creams 2 weeks prior to treatments on the area of RADs (if one breast, be sure to get up into the armpit and into the ribs as well). This is what my RO asked me to do. Continue as your team directs you, most of ours seemed to say 2- 4 times depending on various SEs.

    2) Drink lots of water.

    3) Walk or move as much as you can, given your own limitations.

    4) Double check with your RO/team about meds you are on, as some on my list were ones I shouldn't take before AND during RADs & after for at least 2 weeks (antioxidants especially).

    5) Everyone is different. Some experience SEs immediately (like me lol), others sail by with very minimal SEs. If you are concerned or experiencing pain/redness/swelling/heavy feeling/etc, don't be afraid to speak up to your team. That's what they are there for! :)

    6) If you do experience SEs, one of the things that SAVED me was "Boob Lasagna" - whuch us a cream called Aloe Vesta that's layered on with special gauze and then wrapped under a compression bra. I think I would have lost my mind the last 2 weeks without it. Ask your team. Also, you can find it on page 6 of the Oct Rads Group.

    Ok all, hope this will help you all a bit on your RADs journeys.

    Wishing you all the best and quick healing after you get to ring the bell! Good luck Warriors! You got this! <3

    Heart




    Breath Holds (Gated Respiration or DEEP INSPIRATION BREATH HOLD (DIBH)


    image

    This might be something some of you will have. I did. It's usually used for left sided BC to keep the heart out of the way of the RADs.

    I was afraid I was going to screw it up somehow. What helped me was asking my RADs techs about this directly. For me and the machine I was being treated on, they input thousands of data points from all my imaging info from the "setup" (plus recalibration for each treatment and a new scan each week) and other mumbo jumbo I couldn't hope to ever comprehend into the computers that run the machine and it established a "parameter" for me, a gate.

    If I, through holding too much breath, not enough, or couldn't continue to hold my breath any longer for whatever reason, the machine automatically shut off in a nano second when I "fell" out of that parameter (gated) range. Hearing that made me feel a ton better about the role I played in potentially screwing the treatment up and accidentally radiating my neck, brain, foot, whatever. LOL.

    Good explanations can be found here:

    https://www.petermac.org/services/treatment/radiation-therapy/other-advanced-technologies/deep-inspiration-breath-hold-dibh

    https://www.verywellhealth.com/respiratory-gating-for-radiation-therapy-with-breast-cancer-4154077

    A couple of good videos on YouTube are here:

    "Deep Inspiration Breath Hold with VisionRT System" https://www.youtube.com/watch?v=JLWaTFHkCXA (I like this one because it shows exactly HOW the computer knows WHEN to shut off the radiation!)

    "Deep Inspiration Breath Hold Technique" https://www.youtube.com/watch?v=n6jXkgLnNnY


    "Deep Inspiratory Breath Hold (DIBH) Treatment" https://www.youtube.com/watch?v=oU8TE0fvqMg

    Hopefully something here helps ya'll get through the rest of the RADs in your plan. Sending light and healing to you all. <3

  • moxie32
    moxie32 Member Posts: 51

    Thank you Spoonie! Very helpful info.

  • HeartShapedBox
    HeartShapedBox Member Posts: 117

    Hey Flowerkid, I see we continue to be on the same treatment schedule!

    Thanks for all the detailed info Spoonie.

    Baffled, have you seen a physical therapist for your lymphedema? That helped me tremendously (my lymphedema and cording improved within a couple sessions of manual therapy and "homework"). As for scheduling, my initial meeting with my MO was a month ago, but my radiation schedule was pushed back a few weeks in order to regain adequate range of motion. After my simulation (positioning, with scans and stickers in a CT machine) it was another week + for them to plot treatment to schedule a dry run. My PT said that radiation would most likely make my lymphedema worse and possibly reform the cords, but that I should continue with my prescribed stretches and that would be the best thing I could do for both issues.


  • HeartShapedBox
    HeartShapedBox Member Posts: 117

    I had my "dry run" today in the radiation machine, and I'll be doing the breath holding as my simulation scans showed it beneficial for me. It was over an hour of positioning, xrays, repositioning, more xrays, different angles, positioning, rinse and repeat... I'm small and don't have much padding on my bones and I dont think that made anything easier. I found an hour lying still on that hard table mildly uncomfortable, and my shoulders and arms kind of went to sleep. But overall it wasn't bad, and my techs were all personable and kind.

  • martaj
    martaj Member Posts: 307

    Good morning all. I have my 1st radiation on March 9th. Kinda of nervous, but Doc really did a nice job of explaining things. I will have 6 weeks, Monday-Friday right breast. I have triple neg breast cancer, partial mastectomy with reconstruction and sentinel node removal Feb 13th. Healing well. Back to Gym exercising. I've done 5 + month of chemo, hair coming back. On trial med every 3 weeks. That gets restarted next week also. I have fair skin so hoping not to "burn". Good thing was, where cancer tumor was housed, which had disappeared with chemo, margins were clear as where lymph nodes.

  • ziggzmom
    ziggzmom Member Posts: 10

    Hi all ~ I do my simulation tomorrow (Friday 3/6) and my first treatment on March 9. They've also added to my original plan, so it is now set for 25/5 weeks. I am also pretty fair skinned, so am nervous about that. I appreciate all of the wonderful information that has been provided in this thread! My RO also indicated there is no deodorant concern. I've been practicing holding my breath!

  • baffledbutterfly7
    baffledbutterfly7 Member Posts: 4

    Heartshaped, yes I have met with PT, I have done one session and she showed me the massages I need to do to help, and she wrapped my arm and had to keep that on for 24hrs. The swelling is better but have a lot of pain in my hand. I see her again on Friday. Thank you for the info!


  • Catlady64
    Catlady64 Member Posts: 3

    Thamk you so much, such comprehensive info. I have my simulation appointment on March 13th and was apprehensive about holding breath technique. Your info has helped enormously to allay my fears. Thanks for taking time to post this info.

  • flowerkid
    flowerkid Member Posts: 83

    Looks like a few of us are starting March 9. Good luck to all

    I had my dry run today; was more emotional than I expected. But ok. Nice to chat with other women in the waiting room.

  • Brooklyn1234
    Brooklyn1234 Member Posts: 29

    Hi all,

    I finished my third radiation treatment today. I asked my RO for Mepitel film, which is supposed to reduce the skin symptoms. It's basically like a piece of saran wrap that goes on your radiation site and stays there 24/7, including during radiation. I have read and heard amazing things about this film.

    I have always had really sensitive, dry, eczema-prone skin, but my RO said there's no correlation between that and worse skin effects from radiation. I have eczema on my chest, and I'm told there's a chance the radiation will improve it.

    My cancer is left sided, so I'm doing the breath holding. When I went in for the test run, they told me to hold my breath as long as possible. But there's no benefit to being able to hold your breath a long time. If you are willing to go a long time, it's just slightly easier for them because they don't have to give you breaks in the radiation. I really knocked myself out trying to hold my breath for as long as possible, not realizing that it was doing me no extra good.

    Good luck to everyone else starting out this week and next! The good thing about radiation, unlike chemo, is that every weekday you are one step closer to being done!

  • tinkerbell107
    tinkerbell107 Member Posts: 289

    Well the day before it all begins. Good luck everyone. Lubing miaderm, plus have Aquaphor. Went to the store yesterday for cotton tank and t shirts. Since I am not well endowed, no bras are needed. My radiation pamphlet said avoid alcohol beverages. So I guess my last glass of wine will be today. Cheers


  • HeartShapedBox
    HeartShapedBox Member Posts: 117

    Brooklyn, that's great that your RO is providing Mepitel film! I think I'd need to buy my own (if my RO approved it- some don't). I've been reading about it's success as standard of care in New Zealand, with clinical trials showing a whopping 92% reduction in skin reaction severity as based on RISRAS assesment) :

    https://clinicaltrials.gov/ct2/show/NCT03910595

    I was planning to speak to my RO about this the next time I meet with her (it's been all techs for awhile), but I'm also concerned about using it because of how badly my skin has been reacting to adhesives since surgery (I got chewed out by my chemo nurse about this last Monday). The small Tegaderm stickers they used as radiation placement markers pre-tattoo itched while I had them on for a week and burned coming off- days later I STILL have red circles of skin where they were. I know Mepitel film is different , but I'm still worried it could potentially do more harm than good if I already know my skin is reacting. In the meantime, I'm moisturizing several times a day in layers of aloe, high quality lotions, vitamin E, and sealed in with a layer of Alba "Un-petroleum" since I hate using petroleum products (which most heavier creams like Aquafor are). I've also read that Manuka honey is effective, so I may incorporate that.

    https://www.medicalnewstoday.com/amp/articles/2350...


  • flowerkid
    flowerkid Member Posts: 83

    First radiation tomorrow. My question: I had a single mastectomy no reconstruction yet. I do want to wear a bra because I am not planning on going half flat(!) But I hate to ruin the new bra I just got through insurance! How do I put cream on ? What do I wear!? Tank top sounds good, but won't be able to take it . Is there something I can cover the cream with??

  • HeartShapedBox
    HeartShapedBox Member Posts: 117

    I've heard some people use Saran wrap, I've been tucking squares of soft scrap fabric (saved from old sateen sheets) into a tank top, since I am going half flat and my PT said no bra.

    *To clarify, I lube up my left side, stick the scrap fabric directly on my skin so it's flat with no wrinkles, and a tank top on top just to keep it in place. I also bought a bunch of cheap plain tshirts

  • flowerkid
    flowerkid Member Posts: 83

    Thank you heartshaped. So today i put on the cream they had given me, it wasn't too greasy and I just wore a t shirt, since I wasn't going anywhere (no bra). I am impressed with you for going half flat; not sure I can handle that. I think I need the bra with soft filler. I probably could go half flat without being too noticed as I am small in the first place.

    If I ever end up with greasy cream I will follow your idea of fabric.


  • ziggzmom
    ziggzmom Member Posts: 10

    Hi all. First day / session done and it went pretty smoothly. How long did your sessions take?

  • JLBinPDX
    JLBinPDX Member Posts: 71

    Green tea anyone? I had triple negative cancer in 2017 with five weeks of radiation after four months of chemo. Well, unfortunately I'm back with a new primary on the other side. I remember I brewed green tea and used the tea bags right after radiation. I'm pretty fair skinned and endured radiation pretty well. So well, in fact, that I just had a reduction and lift on the radiated side (to match the new lumpectomy side) since my skin was decent enough to handle it even after radiation.

    So, anyone know about the green tea regimine? I can't find anything about it.

  • JLBinPDX
    JLBinPDX Member Posts: 71

    ziggzmom, my sessions in 2017 were so quick (we'll see how it goes this time with this new primary). The process was to go right back to the waiting room and, since they'd taken a picture prior, they'd call me back to radiation quickly. The whole process--with a warm blanket and music--was maybe five minutes, probably less. Hope yours is going smoothly.

  • HeartShapedBox
    HeartShapedBox Member Posts: 117

    My session today was only 15 minutes total including some friendly chit chat with my techs: I get 2 Xrays to start (to make sure you're properly aligned), then 4 different machine postions/ "blasts" with 10-30 seconds of breath holding each, 2 regular and 2 with a "bolus"- a brass " fabric" draped over the treatment zone that amplifies the skin surface dose on chest wall/ non recon mastectomy.