Winter 2015-16 RADS
Comments
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9 down, 22 to go!
Met with the RO for my weekly check up with him. He asked about itching and pain and soreness in my throat, all of which haven't happened yet. Just the 'normal' pangs of pain/discomfort from the surgery healing. My nipple is definitely a little darker and he confirmed it when he looked at them.
This morning before treatment when I woke up my radiated side felt SO much hotter than my non radiated side. I went to the bathroom and grabbed a face cloth and put a cold compress on it for a few mins, which seemed to help. When I told my RO about it he kinda seemed surprised but I remember others on here mentioning the same thing happened to them?
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Welcome Welcome Grammy4 and tshire - so sorry you have to be here but glad you found us.. keep us posted when you get your dates and# of treatments confirmed..
rainnyc - thanks for popping in and sharing your experience- so appreciated!
Octogirl - glad you got started and hope the schedule stuff settles down for you! Glad day one went well and great news on the reduced # of treatments
lindab142 - Good luck today and hope you get some answers ..
Peabrain - your place sounds awesome with the special pre-rads appt - I go for my 1st RO consult next week - hoping mine will be similar
shannondunlop - glad all going well - hope it stays that way
Cardinal - Good luck tomorrow - great you are getting started
I love all the sharing here - great to go thru this together and agree with Jabe so interesting how different it is between RO's and treatment centers.
Hugs to all
Mary
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Finished 21 of 25 today.
I thought I'd mention two minor things that have really helped me. The first is lip gloss, because the room is so chilly and drafty. The second is that the techs let me hook up a small speaker to my iPad for music. I don't like the sound of the machines, and it really helps me to have some music to send my head to when it's all going on. My treatment is about 25 minutes, though I know many have treatments that are shorter. On X-ray days, it's about 45 minutes.
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rain...at my treatment yesterday they played Xmas music over loudspeakers....mixed feelings about that....it is distracting in s good way.... But the Grinch in me would rather listen to classical...
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we also have music playing throughout the room during rads. depending on who the nurses are that morning it's either Christmas or some sort of popular music. I actually enjoy the christmas music although one song came on and I got emotional and had to put my mind elsewhere so I didn't start crying and slightly move on the table.
I'm just so ready for this year to be over.
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Our techs also will play music for you; they have Pandora. But the control freak in me wants to *control* something about this experience, hence my own music. Lots of Bach, and one x-ray day I listened to the Rachmaninoff 2nd piano concerto--possibly the schmaltziest piece of romantic music ever!
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Octogirl- they play Christmas music in the treatment room at my rads place, too. First few days it really bothered me but now I sing along in my head to be distracted.
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Steflove, I am 8 days post rads and my radiated side is still warm to the touch. When I was in the middle of treatment I could feel the heat through my shirt. I bought a cooling towel which I used on days that it was really hot to the touch. My techs asked me every day at the start of treatment how I was feeling and the male tech (my favorite) always took a close look at my skin. At one point it was deep, deep red under my arm. He let the doctor know. Octogirl, that is great news!
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Hi ladies, My sim is this Friday and I think I am starting rads on Subday. They are open on Sunday because they are closed on Christmas Eve. I'm not sure how many treatments yet. Originally RO said he was going to try for 16 treatments, but I think that was only if I could do prone position, which after my CT, they said I could not do. My biggest problem now is a pain in my neck, literally! My neck and shoulders are killing me. I had a reduction done with my lumpectomy, so I'm wearing a sports bra 24 hours a day. It is killing my shoulders and neck, and I'm worried how keeping my neck turned for rads is going to feel. I went to my chiropractor today and he told me that my neck was "angry" haha. I feel much looser after seeing him and am going back tomorrow, so hopefully I will be nice and loose to start rads. Best wishes, positive thoughts, and Happy Holidays to all of you wonderful, strong women. Patty
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Octo, thanks for replying. The day of my sim I did meet with the RO's nurse and she gave me sample lotions and a coupon for one lotion. She said not to put anything on 2 hours before treatment. I purchased Aquaphor right after and put it on that night and around 11am before 1st treatment.
NOTE: I would pester them about lotions and sensitive skin (if you have it, like me) before using anything. I don't know why it's a secret until the day before. I love that someone got to watch a video and get information beforehand. That's how it SHOULD be.
I didn't try them before purchasing Aquaphor, and I bought a huge jar. I put it on before the first treatment and wore a cotton T-shirt - they had to wipe it off and told me to apply it after the treatment and later at night. Before 1st treatment, yesterday they noticed my breast was a little pink/red and marked it up to see if it spread.
I've done 2 things different: new laundry detergent and the Aquaphor. Today, I put it on again after treatment, then realized I should have tried the other type which is only available at the hospital Walgreens.
Today, my right breast is still a little red, warm to the touch and they called my surgeon to see if she can get me in. It might be cellitis (a skin infection). Might be having a reaction to the Aquaphor - I'll tell them tomorrow.
I made a sign from a coloring book and my first day, thinking about the Healing Rays coming down over my body. And I brought a lovely prayer for healing adapted from the one from Rebbe Nachman of Bratslav from a book my rabbi gave me when I was diagnosed. One of the techs said it with me, which was nice.
Oh, then my rabbi didn't call me after the surgery ... nor did any of my friends from the synagogue, so I quit. I am in touch with another rabbi who is praying for me and can follow my progress on Facebook.
I may have some scotch tonight; I'm a little nervous about this redness. I asked RO if I could ice it or put warm heat and he said to wait for the surgeon to call me in the morning.
All my techs are women and they are terrific. I'm grateful for them - they help me to make it as smooth and quick as possible. Haven't had music yet.
Good luck everybody
Linda
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12/28 treatments and my breast has gotten a little itchy and the area is looking a bit tanned. I know the itchy is normal but was hoping it would start a bit later. Hopefully, it won't be consistent
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treatment three today went fine, other than the fact that they called this morning to reschedule it to be an hour earlier than planned...which was doable today but not really convenient since it meant rescheduling a meeting and leaving work early. This is the third (or is it fourth? I've lost track) time I've been rescheduled on short notice. At least this time they gave a reason: they said they had some 'special case' that was going to take a while they had to do in the afternoon, and they wanted to get me in and out before that as they were afraid otherwise I'd have been there quite late. And fortunately, I have the next two weeks off of work so after tomorrow I have much more flexibility with scheduling. They did give me apt times through NYE Day... (4 per week since they are closed for Christmas and NYD); we will see how those times hold up in their schedule book.....
and then, they came looking for me to give me: 100% aloe, a personal robe, AND written instructions on what to expect, what to do and not to do, what I could wear and not wear, etc. !!! The staff member who gave them to me said she looked for me yesterday to give it to me 'so you could have it before you started' but just missed me... (? Ok, but I am thinking to myself... yesterday was treatment number two! ). I am with you, Linda: I don't get why it is a big secret until the day before...why not give it to me at the sim?
oh well, I do like and trust the RO...and the staff seem to know what they are doing on the technical side. They could use a good office manager though. Still, so far no SEs, so I can't complain too much!
linda, hope you get more info from the surgeon, and good luck to all!
Hugs
Octogirl
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I had my sim yesterday and my first treatment today. Has anyone else had trouble with their arm/hand going numb while holding it over their head? I've found that there is something about the position that makes my arms go numb, particularly on the side they are treating. When we did the sim, I finally had to call out (everyone was in the other room) and tell them my hands were so numb and cold and my arms hurt so bad, I didn't know if I could hold the position any longer. Fortunately, we were almost done anyway.
Also, is there some technical reason why the radiation suite is so cold? I just about froze during the planning CT. Then during the sim, they washed off some the marks with very cold alcohol, and I was shivering after that. It was a good thing they were done by then, there was no way I could have held still after that.
The biggest problem I'm running into so far is scheduling. The facility here is so busy, I just have to take whatever time they have on any given day. I'm hoping that once some of the existing patients start finishing, I can get dibs on a regular time. They also only treat between 8:00 and 3:30, so no going before or after work! Add in that this is my busiest time of the year, with public events that can't be rescheduled or cancelled, and it's been difficult.
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lindab142...love the idea that radiation is just "healing rays"...thank you SO much for that. (I am usually so anxious about rads but am hoping the way you framed it will help not to be so anxious and will share the way you framed it with others,)
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Happy Hammer I think of it as microwave! : )
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Had 2nd of 10 treatments to bone today. The first yesterday was uneventful, the staff is very friendly, music was playing and although the room was cold, they had a warm blanket for me. Both appointments were on time and went smoothly, but when I got up from the table today, I was very wobbly on my feet and crashed into the wall as I left. Turns out, I hadn't hydrated enough, so I must remember to hydrate before tomorrow's treatment!
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good morning folks - first treatment down yesterday, which went quite smoothly, but am in complete agreement with Cubbie2015 re chilly room and numb/pins and needles in upraised arm. No music, but did find the little monitor with visual cues for breath holding interesting and distracting. Techs were efficient and I found all the moving of the machine to be the only (slightly) intimidating part. Chatted with a very positive woman (much like those here) about her treatment which had a great calming effect. Thank you all for your sharing help!
Now finished work for the rads period, and have been given my complete apptschedule, so on we go. Will finally have initial MO consult Jan 8 (10 days before end of rads) and keeping fingers crossed no surprises there.
Better, hydrated days ahead for you Bjsmiller, and hope you are feeling good PattyMeg! Wishing you all a good day ahead, Deb
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Octo - glad you got some aloe - I'm thinking that's something I may need. I showered and tried the teeny tiny sample of Miaderm last night; it's still a little pink but better. That stuff is really expensive.
Have a ton of work today so hope I can get in to see surgeon and get an answer.
Happy - you're welcome - we can thank my counselor for that.
Cubbie, I'm cold too and then they doodle on me and it tickles. Then RO touches me with his freezing hands.
Problem w/hands: hydrate and I bring in a little toy to squeeze; it makes me feel better. Will take a pic.
Luckily, my appointments are around 3:15-3:30 daily, so that's good. I only have to take a little time off work.
Hope you all have a great day - think positive healing thoughts.
Linda
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Cubbie, I've had trouble on and off with numb hands during the longer sessions, the sim and the days when they take x-rays. They're aware of it and will help you off the table if you need it. They'll also give you a break, but I would never do that as it only prolongs the session.
I was told the equipment needs to be in a coolish environment. They told us to wear warm clothes on the lower halves of our body. And they'll cover our arms if we want. (I always have said no because it just adds to the total time on the table.)
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Cubbie, I have been offered a blanket, but I've said no, because I have these weird touch issues where it bothers me to have one side covered up and the other side not...(because I don't like the feel of where the blanket or gown falls on my body when they do that, and it bothers me enough that it makes me feel like jumping off the table. I am just weird that way). I have had to be fairly insistent to convince the (mostly male) techs that I actually prefer to be naked from the waist up. (on both sides). But they get it now. Besides, if they are going to see the 'bad' one, they might as well see the 'good' one, right? Anyway, I imagine they'd bring you a blanket if you let them know how cold you are. The other thing I've done is wear my favorite and very warm knit hat all through treatment. It is totally outside of range, and no one has told me to take it off, and remember that you lose a lot of heat through your head (especially those of us without hair :-( ). I think the hat makes a big difference, maybe you should ask if that is ok for you.
The only time I had issues with numbness in my hands or fingers was during sim, perhaps because of the longer time frame, but I do have issues with my shoulder hurting and even feeling slightly frozen and difficult to move after treatment. It happens to be on the treatment side, but fairly sure that is just coincidence: it is the remnant of an old rotator cuff injury and just doesn't like being in that above-the-head position even for a short time. I've been doing stretching, which doesn't seem to help too much but yesterday I took an OTC NSAID an hour or so before treatment and that did help...or perhaps my muscles are getting in shape. Indeed, one of the techs commented how quickly and easily I sat up after treatment: she said I must have strong ab muscles. Hah!! That's a joke and I told her she probably says that to all the girls :-) : but maybe they will be a bit stronger before this is over. One can only hope, right?
Hugs,
Octogirl
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I'm in. I had my last chemo yesterday and will start rads 3-4 weeks from now. Just waiting for the call with start date. It will be 5 weeks for me. Looking forward to all the helpful tips and experiences from everyone.
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LindyC, welcome! I'm halfway through today, and so far am only slightly flushed on the treatment side. The doctor today asked if I was feeling fatigued. I told him no, but that my co-worker who just completed radiation, though didn't have chemo, has told me she was very tired after week three so I'm waiting for it to hit. He said that most patients who have been though chemo don't say they're experiencing fatigue with radiation, because it's nothing compared to what they've been through with chemo.
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Peachy..hi, thanks for the welcome..and yes, I can't imagine the fatigue from radiation would come close to the chemo fatigue. I was never so weak in my life and hope to never be that way again. While rads isn't a walk in the park, I believe it will be easier than chemo.
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Hi Ladies, I had my sim today. It wasn't too bad. I came home with a few blue freckles to add to all of my brown ones ( iIrish skin LOL) The RO and staff are all wonderful. No Christmas music playing, but they had the big radiation machine ( yes that's a technical term) decorated like Rudolph. I will post a picture on Sunday. My first treatment is Sunday. They are open this Sunday because they will be closed for Christmas Eve and Christmas Day. I'm due for 22 treatments and 6 boosts.Best of luck everyone. I'm sending healing thoughts your way. Patty
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Mary: Please add me to the list! If all goes as planned, I'll be having my sim on January 11 (then treatment for 6 weeks, schedule TBD)...
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First day of rads No holIday music, but there was a giant reindeer
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PattyMeg: woulda made my rads treatment day. Is that actually a glass door to the outside world behind the machine? or just a picture?
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Love the reindeer machine. My friends are saying it looks like a mixmaster.
I'm off rads because of redness I think from the aquaphor lotion I used before treatment. Dr. is treating it like a skin infection, antibiotic and special cream. I go back Tues. for check up to see if I can resume rads after 2 treatments only.
Have a great day!
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Hello all! I am new to this thread. I have an appointment on Dec 31 for my sim. My treatment will begin in January. Hope to know more specifics after my appt. Thanks for all the info, I am trying to read as much as I can before all this begins.
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Queenmomcat, no it's just pictures on the wail of trees, but I think they might be glass panels, and they have trees on the ceiling as well. I guess they are trying to make it as relaxing as possible. Lindab142, my friend said the same thing. He thought it looked like a kitchen aide mixer. Haha. I'm sorry you are having so much trouble already. I'm a little worried too. I am very fair, and after one treatment, I'm a little pink and feel a little tingling. Maybe the tingle is in my head, because I'm worried. I had a reduction with my lumpectomy and the skin on the underside of my breast is still a little raw. Treatment 2 tomorrow at 7:10 Ugh!!! Haha right before work. Good luck everyone
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