SEPTEMBER 2008 rads group
I met with my radiology oncologist today and WOW, they got me through their system quickly. Got my tattoo markers and had my simulation. I figured this would be an informational type of meeting, but I'm glad they were eager to start.
So my rads start September 2, for five weeks.
Anyone else want to join in and help keep our spirits up?
Comments
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Me too!! I'm in, I start Sept. 2nd also!! So far surgery was a breeze, I had a partial masectomy and a re-excision. I bounced right back but am nervous for rads. I am very active, I have 2 jobs, 2 kids (ages 2 & 4) and am 35 yrs old. I will turn 36 during rads next month.
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I had a bilat mx (left side cancer; right side prophylactic) 7/9. I had four doses of TAC before the surgery, another one 8/1, and my LAST one is tomorrow.
I have two kids, too, but they're older, 22 and almost 17. I'm 57 and have one job...that's enough because it comes with a 1-1/2 hour each-way commute. I'm doing my rads near my office for that reason...end of day, only have to leave about 45 minutes early, can still make it home at a reasonable hour.
I'm having four-field area of radiation, primarily focused on the lymph nodes under my arm, around my clavicle, back shoulder, and center sternum. No breast to radiate, so they're going for the next areas the bugger might pop up.
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Just a bump for anyone just learnng they will be starting rads in September.
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Hi Ladies,
I'm suppose to get a call Monday telling me when to start- will either be some time this week (still need stimulation) or first week in Sept. My treatments will be long- not looking forward to 7 weeks. I just pray it will go quickly and smoothly - for all of us!!
So I'll be here with everyone
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Hi Nancy,
I'll be right there with you on the rads. I start the15th of September. I have to go for CT scan before (they won't use the one from March) and I imagine simulation like everyone else. I have 5 1/2 weeks as I'm still undecided about reconstruction. I'm sure I will do it sometime in the future but I'm really going to need a break from all this for a bit
My plan is to work 4-5 hours and then go for a treatment and then home. Where I have to go is an hour from my home or 1/2 hour from my work so it just makes sense. I'm told they are very good about working with people's schedules. This will take me to just before Halloween (one of our family's favorite times to decorate and dress up).
Looking forward to continuing this journey with you all.
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Hi Roberta and Rose! Glad you guys are on board. It was getting lonley here, LOL. Everything I've head about rads is that it's easier than chemo. I certainly hope so. Chemo was not really bad for me but it was NOT enjoyable. So that should make rads, what? Not fun...but something tolerable.
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I swore I'd never get a tatoo, but I got my markers today
and did the simulation. I start in two weeks on September 8th for 7 weeks. I had a biopsy/lumpectomy in June for what turned out to be DCIS, and two re-excisions. I'm ready to get going with this, but I guess I have a little bit of healing still. I wish you all the best. We'll be through this before you know it!
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Hi - I started radiation the end of last week - so have only had two treatments - can I join in too??? Will have 33 treatments in total. Had 16 weeks of chemo - then mastectomy (right). Now I am starting the radiation. There was lymph node involvement so the radiation is quite extensive. Chemo was HELL - had complications with the mastectomy but you know what - I don't care - it is worth it! I made it through it and know that the radiation will be the same. I can do anything for 7 weeks. It will be nice to have some ladies to talk to through this - I live in a very remote area so no support groups nearby. The drive to radiation is one hour both ways - I plan to rent books on CD and listen to them during the drive.
Will keep everyone updated on progress!!
Stephanie
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Hi Nancy258, I had DCIS also but one re-excision. Glad you joined the group! Has anyone bought any creams yet or are we waiting for the effects first? One week from tomorrow-oh boy.
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Good Afternoon ladies,
I just got a call for my planning on Wed. and will probably start on Tuesday.
I have PrincessS- I started a week ago using the Aquaphor cream and I just ordered Miaderm lotion.I bought Dove sensitive shower gel soap and cotton sports bras (I'll pick up a cami if needed later).
Me too Stephanie - I will be working all day and then an hour drive going and coming back. I think that's what going to exhaust me first.
Hi Roberta - I can understand needing a break. Who knows Nancy258 - you might decide to get another tatoo
Have a restful evening everyone.
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My rad onc's nurse gave me a tube of Calendula ointment. It says it's homeopathic, which sounds good, but probably expensive. The store near me that sellls the products is a health food store not known for it's discounts.
Aquaphor is readily available at all the drug stores, so I may switch to that if the price is better (and I can use my discount/price club card).
Rose...are you in the US? I ask because they wouldn't start me on 9/1 because it's a holiday (Labor Day) and all the med offices are closed. It would have been nice to get it started on a Monday.
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Thanks PrincessS. I haven't bought any creams. They told me they would give me something to put on the night after treatment. Are the creams you're talking about something that prepares your skin for treatment that you would put on ahead of time?
That's funny Rose47. Maybe I can make something out of these dots when I'm done!
I have to go get some cotton sports bras also. All my bras are underwire. The nurse also mentioned this Toms of Maine deodorant that was the only thing beside cornstarch acceptable to use. I see some places online that sell it. Does anyone know if you can buy it in regular stores?
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Wal-mart and Target both have Tom's of Maine products.
I am using pure aloe and a calendula lotion. I mix them together because I am to cheap to buy miaderm! Anyway, I don't remember the calendula being outrangeous -- in the $10 range for a bottle that has lasted the whole 6 weeks. (well, so far 5 1/2, but I there's still some left). During the early weeks the calendula really seemed to reduce the redness.
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Nancy, I've been using Tom's of Maine deodorant for some time now. But my rad onc said not to use anything while in treatment. (That might get a little stinky...September in NY can be hot and sweaty.) It's readily available in my supermarket and drug stores in the NY area.
The instrux from the nurse were to put the calendula ointment on after the rad session. But I will douible check when I start to see if it can be used again before bed, etc. Maybe I'll do a revkat mix...I like the idea of pure aloe in there.
I guess there's no real right or wrong...just what works for you. But I'm going to start out with the rad onc's recommendation and take it from there.
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You're right NancyD - Monday is a holiday. The nurse had left me a message on my cell phone telling me Monday - She must have boo booed! I edited my post - ha!
I don't remember the doctor saying not to use deodorant? I better be able to use something or I'll be a Peppy La Pu!!
I picked up some all natural Crystal Body Deordorant Roll-On ( fragrance & Paraben free) purchased it at Walgreens. I've never heard of Tom of Maines - I'll have to check it out.
I know Miaderm is high - but I read it was really good and I have alot of treatments to get through. I was told that I would be given a cortizone (sp?) prescription too.
I agree NancyD - whatever works - Everyone's skin will react differently.
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Hey everyone--I'm due to start either this week or next--I've had the prelim pix done so they tell me they make a plan, then call to get started. I have 30 tx, underarm up to the suclavicle or whatever they call it. My chest area is REAL nice to look at these days--sharpie x's covered with clear tape all over, a big incision line thru the middle where the left boob used to be (my nurse sister said its not a scar--its an incision line) and yucky steri-strips and a very bruised right boob from having the port removed. Anyway, after almost 9 months of tests, scans, chemo, and surgery I'm ready for all this to be over!
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I just listened to a message from my rad onc's office, and they wan tme to start this Thu. If I can get away from work at the time they want me, I just might do it. How I want this over with!
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NancyD,
I'm in!! I start next week. Have my virtual sim on Tuesday, start on Wednesday (I think). The place I go is minutes from work, but on a highway with horrible rush hour traffic. So I'm going to leave work at 10 am (ish), rad at 10 30, and go back to work. I'll stretch my 8 hour shift to a 9 hour shift at first, then if it's too much, take sick time for that hour, then if that's too much, shift the rad to later, say 1230 ish and go home from there. All designed to avoid the heavy traffic times. If I have to drive in traffic every day for five weeks, we won't have to worry about cancer as I will be insane........
Can't wait to get started so it can finally all be over!!!
Sue
P.S. Got a scrip for steroid cream, twice a day. Rad onc says okay to add pure aloe vera gel, as I've always had excellent results with it..
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I'm staring on the 15th and before that have to get my blood work done again and go for a CT scan. The rad oncologist said basically they could not use the CT from March (before surgery) which makes sense to me but they didn't have to do the contrast part??. How long did it take to do the simulations and get the tattoos? Really hasn't said anything about prescriptions or anything else so I guess I'll find out all that later.
I'll be going for 5 1/2 weeks and like Sue will try and go to work and then get the rads done and then home. I'm going to start out with a shorter work day first and see how I feel and if I can increase it.
Not to sure why I'm not overly concerned about this. I'm like you Nancy - just want it over and done with and move on from all this treatment stuff.
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Good luck tomorrow NancyD! It's good to get a surprise early start instead of getting put off and waiting like we're all use to!
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Hi I'm joining the group,
Just finished chemo last thursday got the call on Monday for my simulation and tatoos which will be on Sept 4. and start rads on Sept 15, I will have 16 tx plus 5 boosts, . I will have fewer but more concentrated tx as i will be having no reconstruction in the future.
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Hi - I started radiation Thursday of last week - I know most of you haven't started yet so thought I would tell you what has happened so far with me. First of all - everything has been surprisingly easy and painless. I went through 16 weeks of chemo and believe me - so far this is a piece of cake compared to that. When I went for the similation the only bad thing about it was the length of time you have to lie in one position while they take scans, etc. My doc does not use tatoos so I look like I let my grandson take a marker and draw all over me. ha ha I have lines, x's, circles and yes - even WORDS written on me. They said as the lines fade they will just reapply and then eventually all the marks will fade away. My doc says to ONLY use the pure aloe vera gel - can buy it at Walmart - I think the brand is Natures Fruit. Use this twice a day - DO NOT use it prior to the treatment. I take it with me and after the treatment smear it every place that is being treated. If this fails to work there are compounds the doc will prescribe for me. The actual treatment time takes about 10 minutes TOPS!!! How wonderful because for those of you who had chemo - you KNOW how long that took. Just a heads up - as you are getting the treatment - I guess everyone is different - depending on the extent of the radiation you are receiving - you will hear a buzzing noise and that is when radiation is being administered. Then the machine moves around a bit (it's over your head) and you will hear the buzz again. My techs move in and out between buzzes - changing some kind of panels on the machine. You are in the room alone but they can see you and talk to you. I wish the techs had told me what the buzzing sound was because honestly I wasn't even sure when I was receiving treatment. The first treatment - I will admit - I cried through it - not big gulping sobs - just quiet ones - we've all been through so much and each step is hard but it's what we have to do to get well.
Someone mentioned deodorant - my doc said NO deodorant on the treated side. Use a mild soap like Dove and don't use a wash rag on the treated side.
So far so good - 4 treatments and no redness. Really not suppose to see anything like that for a couple weeks, anyway.
4 down and 31 to go. YIKES - that sounds like a lot - doesn't it?? If any of you have any questions - since it seems I'm the only one who has started treatment - please ask. I will wait anxiously to see how all of you are doing - keep us posted.
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Good Evening ladies,
I got my x's with clear tape and the CAT scan planning - and tech made a mold form for me to lay on use during treatments. I go next Tues for simulation and tattoo markers (I think the tech said it would take about 30 min.)
I'm not sure if they will do a radiation treatment on that day too- or wait until the next day?
Thanks for the the play by play tchmuzik - I was curious what sound the machine would make when I was being zapped. Glad so far so good for you!
Hi angelsaboveus
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Shoot, I thought they were starting me early, but they actually just postponed one of the planning sessions a day until tomorrow. Scans and xrays, I think.
Roberta, my onc's using my CT/PET that was done after my neoadjuvant chemo just before my surgery. I don't think I could stand another test, even though the CT/PET was not the worst of them.
Thanks tchmuzik! I have heard it explained before, but you put a good spin on it. Good description.
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Six down - 29 to go - everything is great so far - a little tired but no burning. The techs say that should not happen for about 2 more weeks. Thank goodness!! I do have stiffness under my arm (I am being radiated there because of lymph node involvement) and do my arm exercises every day to keep that from becoming a problem. After surgery it took quite some time for my arm to work right and I don't want to lose that. Everybody have a great holiday weekend - alot of you are starting your treatments next week - be brave, be strong - you each have alot of people thinking about you and praying for you - let us know how you are doing. Stephanie
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Hi everyone. Had simulation done on Aug. 19th. They said they would call me to start in about two weeks. Maybe the week of Sept. 8. Want to get going with it. Still have to do herceptin every 3 weeks for a year. Had 1st herceptin treatment this past wed. Bought some aloe vera cream in the health food store. Its 84% aloe. Been using just to prepare for rads,but I don't really like it. Its so greasy. Going to be looking into other creams-maybe calendular or the acuaphor.
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Awesome Stephanie! Hope your stiffness never becomes a real problem.
Thanks for your supportive words and prayers.
Have a Safe and Restful Labor Day Holiday my friends!! Prayers and Big Hugs!
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I also started a week ago Thursday, round number 7 today, I will be having 28 tx and 5 boosts. No problems or side effects yet, I have been a little tired but I'm not sure it's treatment related or allergies or just staying up too late......
I would suggest not buying anything in advance until you find out exactly what they are going to allow you to use. I was told absolutely no bras after the 1st tx, onc really frowned on my prosthesis which was a lightly weighted swim puff. No creams or gels or deodorant other than 100% corn starch, clean and dry is the goal. Nothing, including corn starch, before treatment as any residue will aggravate the skin reaction. When I start having problems they will give me what they want me to use. I was given no instructions regarding what soap to use although I did go ahead and buy some Dove.
Simulation didn't take too long, maybe 30 minutes on the table. My only problem was a crick in my neck from having to lay still with my head turned to the side. The xray machine is built into the radiation machine but on a separate "arm", they will move the arms around you while you lie on the table. Be prepared for ink transfer from their artwork. Also don't be surprised if they turn the lights on and off, they use lasers mounted on the walls and my tattoos to line me up in the same position each time. For the actual treatment a very flexible rubber like mat is laid on my chest "to concentrate the radiation".
Treatment is quick, I am in and out in less than 15 minutes. They were able to work with my schedule, I go to work at 6:30, leave for treatment at 8:15 and am back before 9:00. This meshs with my daily routine perfectly. On Thursdays I see the radiation onc, I Wednesdays I have a CBC drawn.
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Hi there from the August rads thread! It seems like many of the ladies who I "met" during chemo are over here now. It's interesting how different various doctors/nurses can be in what they tell us to do (or not to do). I was given a something called Natural Care Gel that contains aloe and some other stuff, and was told to use a thin layer in the morning and at bedtime starting the very first day of treatment. They said to use that Crystal deoderant, so every morning I use my regular deod on the left, crystal on the right -- I'm glad it hasn't been a very hot summer here, fortunately stinkiness wasn't a big problem, LOL. I go to tx in the morning (started at 9:10 and they finally moved me to 8:40) and then I brush on cornstarch before I get dressed to go to work. I've been wearing very soft cotton bras from the beginning (nurse recommended a brand called Blue Canoe) -- I just stick my lighter prosthesis in and I'm good to go.
Here is some good news for those of you just starting out: I have done 23 out of 33 and I feel fine! I'm definitely more tired at night, especially if I've had a busy day, and I feel a little bit of heaviness in my legs in the morning, but this is like a walk in the park compared to chemo. My skin is a bit red and I have some swelling under my arm, but it isn't terrible, just a bit uncomfortable. Other than slightly shorter work days, I haven't changed my regular routine at all. I haven't gotten back to real cardio exercise since before my surgeries, but I have been walking 20-30 minutes almost every day.
I just want to wish everyone good luck and reassure you that, for me anyway, rads has been more of an inconvenience than anything else. And the time passes quickly -- I can't believe I am almost 3/4 done.
Lauren
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Wow, Lauren, I can't believe you're already past the halfway mark! I hope my time flies as quickly as yours has. Starting Tuesday.
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