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Starting radiation March 2022

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24

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  • quietgirl
    quietgirl Member Posts: 165
    edited March 2022
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    first session done. Got my appointment times for the remaining 18 and they are all over the place. It is almost strange on some levels as if they are squeezing me to random openings on certain days (most of them are the late afternoon but then there is the random morning appt ). It just make it harder in terms of figuring out traffic so I leave work on time and don’t spend a lot of time waiting. It’s not a big deal but with very little paid sick time left, the more I can stretch it out the better. I have a whole new set of lines drawn on me and I’m pretty sure I have very few tops with necklines that cover one of them. I’m trying to decide if any of the students will say anything (I’m thinking no…a preschooler might ask why I have pen on my skin a high schooler probably not

  • jo-jo2018
    jo-jo2018 Member Posts: 139
    edited March 2022
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    Hi! Can I join?

    I start with my first session of radiation tomorrow. I have no idea what to expect as I did not have rads with my first diagnosis.

    All I know from the first appointment was I do not like that mask/support thing they put over my face. I am terrible claustrophobic

  • quietgirl
    quietgirl Member Posts: 165
    edited March 2022
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    happy Friday Eve as my co-worker says. Hope everyone has had a good week. Only one more session to go this week for those who have started and then a nice two day break. Thoughts and positive vibes for those who are still in waiting mode or having to navigate annoyances such as travel times or awkward position

  • dancemom
    dancemom Member Posts: 404
    edited March 2022
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    jo-jo 2018, what did they put over your head? I guess a lot depends on where and what position they need us in. I was told for my treatment I will be "uncovered, sorry I know it can be a little chilly for the machines in here". For the planning they gave me little heated coverlet. Starting Monday. 🥴.

    Happy Friday eve back at you quietgirl.

    It's been hard to log in, I hope everyone is doing ok

  • jo-jo2018
    jo-jo2018 Member Posts: 139
    edited March 2022
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    Hey dancemom.

    It was a mesh sheet which they put into warm water and put over my head/chest then it hardened. I guess to make sure I didn't move one bit.

    Today went ok, little claustrophobic but it was quick, only about 20 minutes. I will attach a pic of what I'm talking about

    imageHappy Friday eve !!!

  • dancemom
    dancemom Member Posts: 404
    edited March 2022
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    oh, wow. Yes, I see how that would be claustrophobic! Can you take a nibble off the side of an anxiety med before? I cant take more than half of one, I was given them when I had to have an MRI guided biopsy- a whole one made me pretty out of it. I have taken part of one for subsequent mris and it helps.

  • HummingbirdAZ
    HummingbirdAZ Member Posts: 93
    edited March 2022
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    Wow, JoJo, that looks super uncomfortable. Hopefully they don't make you put a mask on top of it. I don't have any marks, tats or stickers like I have read about. They made a mold for me to put my arms and head in but it is more like a pillow with some rigid areas. I am in search of larger, loose fitting, super soft shirts today. I'm thinking men's L or XL t-shirts. They always make men's shirts so much softer! It's starting to get warmer here now so I can't wear sweatshirts and the thought of putting on a bra is not on the table!

    Have a nice weekend everyone!

  • jo-jo2018
    jo-jo2018 Member Posts: 139
    edited March 2022
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    Good idea dancemom, today I will take an Ativan, hopefully that will help.

    Humingdirdaz thank goodness...no mask on top of that too. Yes! Men's shirts are the best. I had a single mx in 2018 so going bra-less is not an option in public. The cancer has also spread to the other boob so another mx will be happening in the near future. Then no bra EVER!

    Hope you all have a great day and enjoy your 2 day break for those still going through rads.

    Thanks for welcoming me into your little group ❤

    Happy Fri-Yay

  • dancemom
    dancemom Member Posts: 404
    edited March 2022
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    jo-jo2018 way to be optimistic! Sorry about more surgery. At least you won't have to worry about one side sagging more than the other I suppose. (The centers of my old vs new boob are about 4" different 🤣 until exchange)

    Reminds me of an observation I made the other day. It was close to 70* (snowing now!) And a young woman was jogging in a camisole. Everything was very perky and still I normally wouldn't notice, but it seemed strange, things didn't move at all as she ran, and she was obviously proud of her look (rightfully so, although I prefer a tad more coverage) She was in her early-mid 20s. All I could think was did she do that cosmetically or prophylactically...? It just struck me as so young to have such a major surgery.

  • odyssey305
    odyssey305 Member Posts: 37
    edited March 2022
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    Hi Ladies. Joining the March rads club! I have my first appointment this Tuesday for mapping and then I get my schedule for 20 sessions of rads. I’m not really nervous about the treatment, but I’m dreading the daily drive to the clinic! The nurse also told me that they run a tight ship and warned me not to be late, which won’t be easy to pull off since I’m sandwiching these appointments in between work and carpool duty for my teens. The show must go on, right?

    I do have a question…is anyone taking an AI during rads? My MO said it’s standard to start AI after completing radiation therapy, but she felt comfortable with me doing both concurrently. From what I’ve gathered the risk of doing them at the same time is more skin irritation. I’m checking in with my RO every Monday, so I’m sure she’ll be monitoring that then. Since I’ve already started Letrozole, I’m not going to stop now, but I’m curious about other experiences. Thank you and hope you’re all having a good weekend

  • sondraf
    sondraf Member Posts: 1,631
    edited March 2022
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    I continued letrozole throughout both bouts with radiation recently and no trouble other than some redness. No one said anything about skin irritation risks but then again they dont really say a lot here - its more on a maybe if you need to know basis. Just keep up with your moisteurizing twice a day (lube the boob as I call it!) and keep an eye out for any sort of water blistering and it should be fine.

  • odyssey305
    odyssey305 Member Posts: 37
    edited March 2022
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    Hi Sondraf. Thanks for the reminder - lube the boob indeed lol! I was told to expa mild sunburn at the least, which sounds like what you experienced. My RO said that I could always temporarily stop taking Letrozole if the SEs are too bad, but short of my boob bursting into flames, I'm determined to power through. But I was a little concerned about what to expect. I'm glad to know you did both without problem!

  • quietgirl
    quietgirl Member Posts: 165
    edited March 2022
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    I think it makes sense if you already started a drug that you continue it because on some levels they already know how you tolerate it. For those of us who start after it’s sort of like not starting a baby on 6 new foods at once because if there is a negative reaction you don’t know which is the cause.

    Most of my appointments are in the late afternoon this week so I’m happy to be able to drive home rather than going back to work. Not looking forward to trying to get up tomorrow morning due to day light savings I’m sure I’ll be dragging by the end of the day.

    Wishing all of an uncomplicated week with no traffic on your travels to and from ap

  • jo-jo2018
    jo-jo2018 Member Posts: 139
    edited March 2022
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    Good morning ladies!

    Hope you all have a great week. Another week of rads for me, thankfully all at the same time which makes things a lot easier.

    I am continuing taking Letrozole during radiation.

  • kotchaj
    kotchaj Member Posts: 214
    edited March 2022
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    Just wanted to jump in and say hello to all of you. I have my last Rad session today so I wanted to cheer you all on from the back end of it! I'm very pale and have turned a little pink, but nothing that is above normal in my case. I had 16 sessions of whole breast with 5 bolus, then 4 boosts at the end which is to the scar area only. The boosts are very quick in comparison to the other sessions. I had to have at least 3 xrays each time before my actual radiation treatment started. This was to make sure that they had me in the perfect position each time. It seemed to be a struggle to have my left arm placed just so. They had told me upon starting that it would be 15 minutes total. Totally wrong. I think I had one out of all of them that was actually that amount of time.

    I had two delays because of snow and was reassured that it would not matter. I then had two more delays because the machine broke down and then the plane bringing the new parts broke down. Having the delays caused me quite a bit of anxiousness, even though they couldn't be controlled, but I made it through.

    I just want you all to know that it will go by much quicker than you think it will. The fatigue is NOTHING compared to chemo and you will be dry mouthed from the radiation. I didn't burn and they all expected me to. Your skin will still be effected for the next few weeks after treatment so I will continue with my momatesone cream that I was prescribed by the rad onc. I asked if that would be enough for me and he had assured me early on that if not, they would prescribe another one, too.

    The skin under my armpit is pretty dark looking, almost like a bruise, but other than a bit pink, that's it and I can deal with that.

    Good luck to you all, you will do great!

    Amanda

  • quietgirl
    quietgirl Member Posts: 165
    edited March 2022
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    little bit of a delay today not sure what was up but only 15 minutes so really not biggie. Total time on table roughly 9 Minutes and 12 seconds. I know because I got to listen to all of Tracey Chapman fast cars (4.26) and material girl (4.46) from Madonna. The clock that is on the wall is broken it has said 4:20 for over a week. Would have been less time but they had to redraw a green x. Still the music was good, the sheets were warm and one more day is don

  • spades2525
    spades2525 Member Posts: 47
    edited March 2022
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    hey everyone! And hello hummingbird! I will be at the halfway point after tomorrow, but I have started to see some skin changes that are actually pretty uncomfortable… redness mostly but very sore under my arm… and even soft wireless bras aren't comfortable. I should probably put cream on more often. So far I agree that the fatigue is nothing like chemo but I am feeling more tired at the end of the day than during my recovery time after chemo. I feel like the 20 sessions will be done before I know it… first 10 went pretty fast.👍 I started injections to keep my ovaries asleep so will be starting letrozole in a couple of weeks. One doctor said I could start it during radiation and the other suggested I wait until after rads is done… I think I will wait

  • dancemom
    dancemom Member Posts: 404
    edited March 2022
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    First real treatment done. It was delayed 2 days, then today another hour delay- something happened to a machine? But once I was in, it was smooth. Just made the rest of my day kind of hectic. Time to slather...

    They give me calendula cream. Said use it liberally and let them know when I'm low and they will give me more, the tube usually it lasts people 1- 1.5 weeks. If it looks like i need something stronger, they will prescribe silvadine. And use as much aquaphor as I want.

  • quietgirl
    quietgirl Member Posts: 165
    edited March 2022
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    dancemom sorry you got delayed but glad today's treatment was smooth.


    a week in and I feel like I have the routine down. They are going to throw me off if they ask me to do something different 😀. Wednesdays, I'm suppose to meet with the RO after my session so we will see how that goes tomorrow.

  • jo-jo2018
    jo-jo2018 Member Posts: 139
    edited March 2022
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    Happy Hump Day!

    Quietgirl sorry you had a delay

    Spades woohoo halfway through, congrats! I find rads i have way more fatigue than when I did chemo in 2018 but I guess I'm going through a real crap time at the moment which doesn't help - story for another day.

    Dancemom so glad you finally started and it was smooth sailing.

    Today I fell asleep on the rad table, no word of a lie. When they woke me I almost chocked when I tried to lift my head and I was still strapped in with my face mask lol

    After they made me sit on the edge of the bed/table a lovely lady handed me a booklet on cancer treatment fatigue. Ye ye I know I'm trying.

    5 days in and my throat/neck is a little pink, worst part is my sore throat. I kinda chuckled when I went through covid screening and pretty much all the symptoms they mentioned I was like Ya (in my head) What a silly questionnaire at a cancer clinic 🥴

  • quietgirl
    quietgirl Member Posts: 165
    edited March 2022
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    jo-jo. I always love the have you traveled internationally in the last x number of days (although they haven't asked that since radiation started). I wonder what they would say if someone said Yup over the weekend I hopped on a plane. 😀


    Wednesday after treatment I'm suppose to see RO. Didn't last week because it was the first one. Today she wasn't in. So I saw a substitute. It threw me off for a moment but he just asked me a couple of questions and made sure I didn't have any. My blood pressure was high but it has been since this all started in December. It's been under such great control for the last 7 years. I have an appointment with my primary care doctor in April after radiation is done (I should have had a May appointment but I bumped it up in case I need to tweak the bp medication).

  • jo-jo2018
    jo-jo2018 Member Posts: 139
    edited March 2022
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    So funny quietgirl, yes imagine.... I actually popped over to Mexico after yesterdays radiation, just got in about an hour ago :) I suppose they have to ask it, but we should get a sticker or something stating we are here everyday for x number of days doing rads.

    Argh that's annoying when you are supposed to see someone and you never got to, glad you saw a substitute though and got some questions answered. Hopefully your blood pressure comes down quickly

  • dancemom
    dancemom Member Posts: 404
    edited March 2022
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    At today's covid screening I had my temp take, then I was asked "so, did anything change since yesterday?" Between work, school, lockdowns, treatments, appointments...haven't traveled in almost 3 years.

    About high BP, I posted this on rant earlier, but why in earth do they take BP AFTER they had me lying on a board with machines moving around me whirring and beeping with lasers shooting out of them while holding my breath on command??!!! Yeah, my BP was a lot higher than baseline!!!!!

    Jojo, sorry about all the other crap. Not easy, you are so strong.

  • gracestella1948
    gracestella1948 Member Posts: 12
    edited March 2022
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    Hi Iam starting radiation next week. How are you doing? I will be getting 3 week integrated booster treatment in prone position. Is anyone familiar with this?

  • quietgirl
    quietgirl Member Posts: 165
    edited March 2022
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    I'm super early today (no traffic). So I'm trying to decide if the woman who just walked in is in fact suppose to be a 3:45 appointment which means technically she is late or she is after me which means she is over 30 minutes early. Time will tell. Edited to add because I know you all want to know. They took my first 10 minutes before my actual appointment time. So yes she was super early but she probably went early also so glad we both benefited. I also got a st Patrick gift. A Lille card and some Burt Bees chapstick. It was a nice surprise. Happy Friday Eve. Hope everyone’s last treatment of the week is as stress free as possible and to those who haven’t started while it might not seem it you are also one day closer to being done as well.

  • jo-jo2018
    jo-jo2018 Member Posts: 139
    edited March 2022
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    LMAO dancemom, right, ridiculous questions to ask at a cancer clinic. Why do they take your BP after treatment? My BP is abnormally low, I remember 1 time my primary doctor once asked me if I was still alive after he took it. Thanks, it's hard but I am trying, you have to be strong when you have no other option but to be strong.

    Hey gracestella, welcome, sorry I have no idea what integrated booster treatment in prone position is, what is is?

    quietgirl, glad you got there in plenty of time, let us know if she was late or early!

  • gracestella1948
    gracestella1948 Member Posts: 12
    edited March 2022
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    Hello Iam starting radiation next week and I still have a seroma from lumpectomy. It was drained twice but the radiologist said it was ok. I didnt have a drain put in at time of lumpectomy because pathology of initial biopsy showed dcis. Has anyone had a seroma with radiation? Thank you

  • quietgirl
    quietgirl Member Posts: 165
    edited March 2022
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    Gracestella if you haven’t read this already it might help a bit https://www.breastcancer.org/treatment-side-effects/seroma

    I had a mammogram before radiation started because the RO wanted a post surgery picture and seroma is mentioned in my write up. Obviously for some people it can be problematic and need to be drained but as stated for many it resolves on its own. So many things factor into treatment decisions, currently it’s a non-factor in my treatment but I don’t know if that will change when we move away from whole breast radiation at the end of the month. If you are feeling concerned ask your RO or their nurse

  • HummingbirdAZ
    HummingbirdAZ Member Posts: 93
    edited March 2022
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    Hi Everyone, FINALLY got a login page on the site and got in seamlessly! Happy they are working out the bugs. I've been literally miserable for days. The whole area is so sensitive, I can barely wear loose fitting shirts, have strong internal pain in both my back and the breast/underarm area and get these stabbing pains in the breast sporadically. I saw pain management on Tuesday and my BP was 183/80--WOW, never been that high! The nurse looked at me and said "You must be in a lot of pain" Duh. They prescribed Gabapentin and put me on the schedule for a spinal epidural nerve block, although they are about 3 weeks out. I then had physical therapy and acupuncture on Wednesday. I was hoping that would resolve it but, no. Today the RO said we are going to throw everything we can at this so prescribed a steroid. I HATE taking drugs but at this point, will do anything as this is 10x worse than chemo. I actually have a really high pain tolerance, if you can believe it. I had 5 children with zero drugs. This is a whole new level.

    If you had chickenpox as a kid and have not had the shingles vaccine, DO IT as soon as your doc says you can! I'm 11/33 for rads so it's going quickly but wish I didn't have so many as I deal with all this.

  • quietgirl
    quietgirl Member Posts: 165
    edited March 2022
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    for your Friday entertainment

    First time my appointment has been so early in the day. I’m waiting here thinking maybe I should have eaten more for breakfast. If my stomach starts making noises I’m not going to be happy 😃. I am no longer asked any questions other than my birthday when I check in (as if someone is going to claim to be me to get treatment. Okay I know it’s really so they know they are checking in the right person). But I guess that means I can take a weekend trip internationally


    on a more serious note, I always sit in the same seat in the waiting room today it was taken. Just realized that there are pictures of the whole radiation team on a poster next to where I normally sit. I find it funny that I never noticed it before today. (In my defense it’s a st Patrick’s day theme so maybe it want alway there). The substitute doctor I saw the other day is NOT on the poster now I’m going to look him up.

    No traffic today and they took me early so it was 65 minutes door to door which was great since I had to go back to work. And I decided since it was Friday I would make a music request so I said anything by Prince and expected an update song. Instead I got The Most Beautiful Girl in the World. So not the update music I was hoping for but still a good song for a Friday morning.