August 2018 Starting Radiation

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  • Ingerp
    Ingerp Member Posts: 2,624
    edited August 2018

    Excellent, Colleen!! Ray rah mouse vacations! I think you'll be exactly a week ahead of me. I looked at a calendar recently and, taking Labor Day into account, I believe I'll have my last rads October 4th. Are you thinking you'll be finished 9/27? It'll be great to have your end date to look forward to!! When do you leave for Orlando?

  • ColleenS80
    ColleenS80 Member Posts: 271
    edited August 2018

    Thanks ladies!

    Ingerp, the tech actually ended up telling me I’ll probably start Wednesday (a week from tomorrow) instead of Monday. She said they ~might~ be able to start sooner, and if so, she’d call, but otherwise Wednesday. But she said she thought I’d still be done by I think October 2nd? So we will be very close to the same schedule! I’m really hoping for no big skin issues so I’m not uncomfortable at Disney!!

    They gave me a perscription for Radiaplex gel and told me to apply 3x a day. They said it’s actually not prescription anymore, but some insurances are still paying for it so they wrote a prescription just in case. Has anyone used this? I hope it’s helpful.

  • Motherofall6
    Motherofall6 Member Posts: 65
    edited August 2018

    I read someone else on here was given skintegrity hydrogel, like I was anyhow I finished in July 33 rads never burned and used hydrogel starting day one twice a day everyday and increased it up to 4 times a day by the fourth week. When I got itchy I also added aquaphor. Good luck to all of you still in treatment

  • Marymc86
    Marymc86 Member Posts: 102
    edited August 2018

    Astyana66,

    I agree with Djt about speaking up. I spoke up and got the time I wanted. Also, since I was such a pain, my RO just automatically realized I wouldn't want tattoos and SHE suggested the markers and plastic stickers. I was so happy! Even those small tattoos were a CHOICE that I didn't want and thought I had no say so in. It made me upset to think it was just one more thing they were going to do to me that I didn't want. Totally understand.

    Thinking of seeing Chihuly soon, too.

  • Djt
    Djt Member Posts: 264
    edited August 2018

    Colleen, that's great, and very encouraging for you, your team sounds fantastic.

  • Debsta
    Debsta Member Posts: 11
    edited August 2018

    Hi everyone,

    I'm also starting radiation this month... today in fact. I have to have 30 treatments total, 25 plus 5 boosts. I'm estimating being done on September 20th. I'm lucky in that I was able to schedule my appts for 4:00 everyday (after work), and the hospital is 20 minutes from work, and 10 minutes from home. I finished my chemo on July 5th and had my mapping/tattoo session on July 27th. Yesterday I had my imaging session and as others have said it lasted about an hour. I have a question though, do any of you have to wear a breathing apparatus? My rads are on the left side, and I have to wear a breathing tube (similar to a snorkeling tube) and have my nose blocked during treatments. Per the technicians it lifts my chest wall further away from my heart. They did tell me if I really couldn't take it, there were other options, but both the tech and my dr said it made a big difference. I made it thru the 40 minute session ok, and am really glad the actual treatments will only be about 20 minutes or so. It is soooo uncomfortable though :(....

    Good luck to everyone during this part of our journey, I hope we all get thru with minimal SEs

    Deb

  • moth
    moth Member Posts: 4,800
    edited August 2018

    Hi Debsta - I haven't started yet but I've done my mapping. I don't have to wear a breathing tube; I just have to take a deep breath and hold it for 20-40 seconds at a time. Our machine is set up so that if I start breathing or cough or whatever it will automatically turn off and they'll start again when I inhale and hold my breath.

    Your center's technique sounds harder!

  • Ingerp
    Ingerp Member Posts: 2,624
    edited August 2018

    I did the deep breath and hold two years ago. It really wasn’t difficult—the longest I had to hold my breath was 17-18 seconds. And yes, if I had moved the machine would haveautomatically cut off, although this never happened to me. And really the actual zapping is more like five minutes once you’re changed and in the treatment room. I think four different zaps from 5-20 seconds each.

  • RobinJ3024
    RobinJ3024 Member Posts: 48
    edited August 2018

    I got set up for radiation today with the CT scan. Got my 5 little dot tattoos and have green marks all over my chest and tummy. Looks like I passed out drunk and my drinking buddy drew on me. #thuglife :)

    Having to delay my treatment a week because I have an incision that hasn't quite healed. I'm a little disappointed, because I wanted to get it over with, but I know it's for the best.

    The last two days, the emotions of this ordeal has hit me again. I am so tired I can hardly keep my eyes open, and I feel on the verge of tears again. I know it's just stress. On top of this, my twin daughters (my only children) move off to college next week. So, I think I'm just overwhelmed in general.

    But will keep plugging along.

    Holding on to Psalm 91:4


  • Ingerp
    Ingerp Member Posts: 2,624
    edited August 2018

    Oh no, Robin--empty nest on top of everything! Surely an extra emotional time for you. Keep in mind that going off to college is the very best reason to miss your kids.

  • RobinJ3024
    RobinJ3024 Member Posts: 48
    edited August 2018

    lngerp -- I appreciate that! That is the very best reason to miss them!!!!

  • NVDobie
    NVDobie Member Posts: 184
    edited August 2018

    Hi, ladies

    Had my 7th session today, like usual, in and out in about 20 min, tech at my center are pleasant, always have the warm blankets to cover, so makes the experience less stressful. Today I actually closed my eyes and relaxing while they were setting machine. Thinking I should bring a box of chocolates for them when I finish the treatment. I forgot my wallet so had to talk my way out of the paid parking lot, the lady at gate didn’t give me any trouble,

    So far no pain no rash from treatment yet, skin startin to get a bit red, feel itchy at time the first few hours after the treatment, I go without bra at home to minimize friction, occasionally prickly pain hits the breast which is normal as I was told by the doc. Something about radiation hitting the nerves in the breast.

    I am however on alert for upcoming side effects. Trying to keep up with my daily walk routine.

    Sounds like the numbers of tattoos are different, some have 5, some have 3, I have 2. One in the middle one on the side.

    Lotion is now my breast’s best fr

  • Djt
    Djt Member Posts: 264
    edited August 2018

    Robin, that's difficult timing, but how proud you must be of your twins, wait till parents weekend, and other events you can share in, it will be great.

    I got very very upset an d emotional at the beginning of my radiation therapy. Somehow. If was the worse part yet! I got really miserable. After my routine was established, it has gotten better, and i almost had quit at the beginning. It IS daunting. It's okay to feel like you do, day by day celebrate the little victories, even if its just walking out to your ride home without crying !. It will get better. I had my 12th one today, and so far, no issues, no burns no redness. A slight feeling of heaviness and swelling in the breast like before period, or experienced during pregnancy. I sure hope itf stays this simple. I think the icing immediate after treatment helps, also the aloe, and cornstarch powder.

  • MoniThor
    MoniThor Member Posts: 66
    edited August 2018

    Hi All,

    I had number 8 today. I meet with the RO and nurse every Wednesday following treatment. After the nurse took my vitals she checked my breast and mentioned how she noticed it was getting a little pink. (I had just finished telling her -“nope. No color change yet”)

    When I got home I could definitely see my radiated breast was a slightly pinker shade than my other breast. So it begins...

    Other symptoms-fatigue. When I mentioned how tired I was to RO and nurse, they both felt it could be partly due to radiation and partly due to lingering SE from taxol. I am 7 weeks PFC so that makes sense. We discussed exercise. I am so anxious to get back into pre dx shape, and my body is just not cooperating. It’s frustrating.

    As far as the actual treatment goes, I have to agree with what others are saying. It is quick and painless. I decided I was going to take a 10 minute catnap while on the table today (I was THAT tired). I closed my eyes and got in to a meditative state and next thing I knew, the technician said “all done”. Seriously. It was that fast. I have read complaints about the noise the machine makes but I am able to tune that out

  • Ingerp
    Ingerp Member Posts: 2,624
    edited August 2018

    Congrats to all making progress through rads. Every day is one more behind you! I know how much sun you’ve had over the years has an impact on how much your skin will be affected. Last time it wasn’t too many sessions before you could see a clear line where my swimsuit would have been back in the day. To everyone—keep up with those moisturizers. I agree going braless when you can is a good idea. I have all of my pre-rads appointments this morning. Looking forward to getting those behind me.

  • moth
    moth Member Posts: 4,800
    edited August 2018

    My radiation creams arrived in the mail yesterday. Now if only someone would actually schedule my rads

    so - this is weird.... I was going to link to the creme that I bought, and it's not on their website anymore. Weeeeeird. Doesn't say out of stock or anything; the page is just blank suddenly https://www.triderma.com/by-skin-concern/radiation... I hope my creme is ok and wasn't recalled or banned or something...


  • NVDobie
    NVDobie Member Posts: 184
    edited August 2018

    You ladies may know this already, sharing it anyway. :-)

    For safer choice of lotions, creams and make ups.

    I used this almost on all things I put on my face and body nowadays. They have app which you can use to scan products in store and will show you the EWG score. However only products sold in US, Canadian only products are not on the site.Click on the product score, it will also tell u the specific issues, allergy, cancer or environment.

    https://www.ewg.org/skindeep/#.W2xpQsJlBdg


  • Winnie437
    Winnie437 Member Posts: 3
    edited August 2018

    Hi, Hello everyone! I am new to this post group. I was found bilateral breast cancer ( left DCIS/IDC and right DCIS) in May/June 2018, and had the bilateral lumpectomy on July 23. Fortunately the cut tissues had clean margins and on both side the sentinel lymph nodes were negative. On August 7th I saw my RO and he decided a plan of 3 weeks whole breast radiation and one week boost for tumor area (the accelerated plan). The radiation will be on both breasts. On August 8th I have the CT scan and the markings done. The radiation therapy will start on next Monday Aug 13th. I am looking forward to have this done and wanted to get my life back to normal again.

    Thanks for the folks who post in this forum. I got both information and courage from others. And I will share my experience as well.


    Winnie

  • moth
    moth Member Posts: 4,800
    edited August 2018

    Got notified that I'll start on the 13th! Yay, so glad. Faster we start, faster I'm done.This way it will only cut a week into school so hopefully will be minimally disruptive and I won't have to miss too many classes.

  • Ingerp
    Ingerp Member Posts: 2,624
    edited August 2018

    Hooray on everyone getting going! I had my mammo/sim stuff this morning and am good to start on the 20th. I asked my RO why I was getting 33 this time vs. 20 last time--I thought it was the dx but she said it's because of the chemo. The skin is more vulnerable so they don't do the accelerated schedule on women who have been through chemo. (Still the same amount of total radiation, just delivered more slowly over 33 sessions.) FWIW my place only recommends Calendula cream and Miaderm. I'm off to Amazon to order some Calendula cream. I think I got some Miaderm last time but it wasn't any better so I'm going cheap this time around. They also said no creams three hours before tx, and to hold off using other stuff (Aquaphor, Desitin, . . .) until after I'm done with treatment. She said after that I can use whatever I want, but some of it is so sticky it doesn't really come off even with washing and can interfere with the radiation.

    On to my first Herceptin-only infusion tomorrow, and then a whole week with no medical appointments on the calendar. Whatever will I do???

  • NVDobie
    NVDobie Member Posts: 184
    edited August 2018

    I have been using Glaxal Base cream after reading here a few months ago. The radiation staff at my center says it’s ok. I also do use it before driving to the center and they have really said anything about when not to use it.

    I finished my 9 th session today, no different or new sensation at this point, besides prickly itch from time to time, the breast is now red but not feeling burns yet.

    Today I decided to go bra free on my trip to center and small shopping trips after and my evening walks.. Was a bit self conscious so often holding something in front of my chest, but boy it is comfortable. Why was bra invented again? I used to be so self conscious about not having my breast moving around too much, now I just want comfort.

  • Ingerp
    Ingerp Member Posts: 2,624
    edited August 2018

    Yes braless feels great, particularly with rough skin! FWIW, people probably aren’t looking/noticing as much as you think.

  • moth
    moth Member Posts: 4,800
    edited August 2018

    Today is going to be my first day but the appointment is not till the afternoon. They told me to plan for about an hour the first time and then shorter afterwards. I have to sort out parking too as they have a 4 week parking pass which will be worth it now that I'm going daily.

    I keep trying the breathe & hold technique at home - worrying that I've forgotten how to hold my breath LOL What a dork I am....

  • MoniThor
    MoniThor Member Posts: 66
    edited August 2018

    Good luck, Moth, on your first day/week of radiation treatment! I am starting my 3rd and final week this afternoon.

    You will do great! I am surprised each time about how quickly the whole thing goes. I usually get to the center about 30 minutes early. (I have to allow for a long drive time and I never know about traffic.) Often, I am barely changed into my gown and one of the technicians pops in and says “oh great. You are here early. We are ready for you.” So I am in and out before my scheduled time.

    Will be thinking about you this afternoon!

  • ColleenS80
    ColleenS80 Member Posts: 271
    edited August 2018

    I just got back from my first treatment. One down, 32 to go! 😂😩

    Imagining little cancer cells dying a terrible death. 🤞

    Moth hope it goes well for you today too!

    Hope everyone is having a good day. :)


  • Ingerp
    Ingerp Member Posts: 2,624
    edited August 2018

    moth really you'll be fine on the breathing. It helped me to count seconds in my head--after the first session or two it'll be very routine and you'll know what's coming. Again--if you mess up or something, the machine will automatically shut off and you'll re-start with just the remaining amount you had for that zap. (And I kept telling myself it's probably good for your lungs. ;-) )

  • lg10
    lg10 Member Posts: 71
    edited August 2018

    I am about to go to my first session. Haven't really thought much about it until right now. And I REALLY don't want to go. I can do this...

  • Ingerp
    Ingerp Member Posts: 2,624
    edited August 2018

    If it helps anybody, I really liked rads on some level. I did not feel at all bad for my hooter because it had misbehaved. Rads seemed like a really cool, high-tech way to do a thorough scrub of any remaining bad cells.

  • moth
    moth Member Posts: 4,800
    edited August 2018

    Back home now and all went fine! They said the first 2-3 would be a bit longer as they're fussing more with positioning but even so it all seemed really quick.

    & they said they would definitely work around my school schedule for the last 5 treatments in September so I'm happy :)

  • Ingerp
    Ingerp Member Posts: 2,624
    edited August 2018

    Great news, moth!

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