Winter RADS 2012 Club...Please come join the fun!
Comments
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Had my planning appt for rads to start on 1/28. They explained it would be a practice session and first treatment will be 1/29. I lucked out and got the 7 AM appt and then off to work. The office is 5 min from my house and then I jump on the freeway for a 20 min ride to work. I also have a conference right before the 8 boosts at the end so I will have 2 days off in between. They were very sweet and I think it will be so much better than chemo.
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As far as the "taking an extra day off rads," I had posted before that in the overall scheme of treatment, most of the RO's will not have a problem if you ask to have a three day weekend just to give yourself an extra day to rebound and get a bit of strength back, or to give your inflamed skin an extra day to settle down if you are really starting to succumb to the side effects. I think many of you would be surprised at what a difference it makes to just have that extra recovery day. I find it amazing that we are all expected to move from point A to point B just like clockwork anyway, when our reactions are all different. Sometimes all it takes to be seen and treated as an individual is a request to get off the conveyor belt for a day or two. If you need it, ask for it.
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Question. I'm still waiting to hear whether I"ll start my rads the 14th or the 21st so this may not matter, but I think I'm coming down with the cold (FLU?) my daughter came down with two days ago. Will they still let me start rads if it's just a cold? ? UGH!! Frustration........
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Hello all. I started rads this week - had #3 today, and 30 more to go. So far so good. They gave me 2 tubes of Miaderm and will give me more if/when I run out. I will see the RO each week and she will check skin condition after a couple weeks. I asked for 10 a.m., but right now my appointments are all over the place. They are so busy that I have to wait until someone finishes before I get my requested time. After about 3 weeks I am set for 10:10 a.m. for the rest of the time. I'm still not used to going every day and I'm afraid of forgetting or getting the time wrong. I do get a 3-day weekend in February because they are going to be closed for one day - there's construction going on and I guess that particular day they know they can't be open.
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I have had a cold all week and they have let me go as long as I didn't have a fever but every place might be different.
Somebody previously asked how much radiation we get each treatment. My doc said it is 180 (somethings) or 1.8 grays per treatment and they like to give a minimal of 3000. -
I just had #6/16 today. 10 more to go. Still looks good, I am very fair skinned, freckles. They gave am a tube of cream and I am doing saline compresses 2-3 times a day....so far okay.
I was told if I got a cold I would still get my treatment. -
The standard regimen for most B/C treatment is a max of 50 Grays, fractionated out at 1.8 per treatment.
And for those just tuning in...brand new BCO article...
Lower Dose of Radiation Therapy Just as Good as Current Regimen for Early-Stage Breast Cancer
Near the bottom of the article it says many RO will want more studies before they would feel comfortable coverting to a lower dose regimen. Well, call me crazy, but the lower dose seem like it would cut into the $$$ to be made, per woman, per treatment. So, you may not get the lower dose treatment actually OFFERED to you WITHOUT you showing an interest and asking about it.
Yes, I realize this info. is a day late and a dollar short for most women reading this, but some have not yet started and it may have relevance for those.
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Thanks Elimar! Maybe that is why my doc said we would discuss early termination after round 19 next week. I will read this article.
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Thanks Shachar for the recipe for the saline soak. I'm going to try that tonight. My breast is red and angry so I need to do something. I've got eleven more to go!
SwgeeWi- I would hope that as long as you aren't running a fever they would take you. The flu is really getting bad this year so you guys take good care of yourselves!Schoolmom- So far radiation is better than chemo. I may change my mind at the end when my boob is all red and burnt like a crispy critter, but right now it's better. I haven't really felt the fatigue yet or maybe my falling asleep at 5:30 every day is the fatigue they mention, but it's nothing like the fatigue you feel with chemo.
Loving- It's so good to hear that the boost will help my skin to heal in other spots. After next week I should start with the boosts. Something to look forward to!
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I shouldn't have bragged about how good I felt. Came home day before yesterday feeling a bit tired but then developed a shaky fever (101) and felt terrible. I thought I had the flu but it was gone the following morning. Yesterday started to itch and now have folliculitis which looks a lot like poison ivy. It is mostly on the treated breast but I have a few stray pimple/blisters on the other breast. I was told to use over the counter cortisone cream with Eucerin calming cream. It helped but I had a tough time sleeping. I think I need to sleep in oven mitts. 11 more treatments and then the big decision...aromatase or no aromatase. Still thinking.
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elimar, On Monday someone posted a link to an article about this different rad treatment schedule on the September chemo thread. I asked about it when I went for my first rad treatment on Tuesday, and one of the techs went and talked to my RO. She said she wouldn't recommend the lower total dose/shorter treatment duration for me but I could do it if I wanted (but I wouldn't have been able to start on Tuesday). I decided to just go ahead with the plan for 33 treatments. I had a chance to talk to the RO about it in person yesterday. The reason she would not recommend that treatment plan for me is that none of the study participants had chemo. They were all early stagers who went right to rads after surgery. I definitely qualify as early stage, but I had chemo because I am HER2+. So according to my RO there is no data proving that early stagers who needed chemo because of HER2+ (i.e. aggressive cancer) would have as good a result as the study participants. Made sense to me.
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PatinMN, Thanks for additional info. that was not in the BCO article. It does make sense that some individuals would be better candidates than others. In hindsight, I think I would have been a good candidate fo the shorter course of rads. I always felt mine was just an "insurance policy" and a "clean up" procedure after surgery disturbed the tissues and cells in the area. I had 33x, and have noticed that lately quite a few women are getting 25x, so maybe there is already a shift to a more intermediate dosage???? Anyone who is getting 25x, do you know what fractions you are getting?
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Hi PatinMN and elimar. (I have a sister in Eden Prairie):) The way my RO explained standard rads vs. the three week course was that standard was 2 grays x 5 weeks to whole breast, then 2 grays x 1 week to the tumor bed (Boost) and the shortened one was 2.67 grays x 3 weeks to the whole breast + 0.53 gray boost to the tumor bed. (this is for the national study going on for early stage BC). I'll have to get the specifics when I go in, but they've already done this study in Canada and Great Britain adn it looks like the shorter version is just as effective as standard. I think they have a lot more leeway than was first thought and hopefully women in the future will only have to endure the shorter course with fewer side effects!
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I only have seven left, including my boosts. I'm doing all right, other than the fatigue. My skin has held up very well and crossing my fingers that it will continue to do so. January 22 should be my last day.
I was watching a couple of women coming into the cancer center today, I think for chemo. They looked so wasted and worn, it broke my heart. And then it made me wonder, is that what I looked like? Did I look that lost, that broken?
I'm glad we're all getting to the end and coming through this as best as we can. Have a great weekend, ladies. -
Anybody use silvadine? Do I out it on just the open ares where the fried rash peeled or all over where I am red? Doc didnt say and I forgot to ask. Hope this works good!
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SwgeeWI, I hadn't done the math, but yes, it does look like what is being called "low dose" in that article is what I have seen mentioned for quite some time as the "Canadian Protocol."
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I used silvadene when I had breast reduction surgery in 2008. I used a thin layer on open areas to prevent infection and then covered it with a nonstick bandage. I never had an infection! I've heard some people mention their skin peeling off when they remove tape. Mine does that without rad. treatments! Do they cover up the breast area that's been radiated afterward with a bandage and tape or was that just from people who had open sores? I start my rads on the 22nd.
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My skin comes off with the tape that they put on me for rads so they try to leave them on for as long as possible and let them come off on their own. Thanks for mentioning the silvadene...maybe that would be a better idea.
When you have your first treatment they will mark you with permanent markers and put these little stickers on you. It helps them to line up the machine each and every time you get a treatment...which in turns makes it go faster as well. Some of the stickers that they put on you are just round circles and then some of them are longer lines. It's the longer ones that my skin doesn't seem to like very much. They leave them on you day after day until they start to come off on their own and sometimes on Friday if it looks like they are going to fall off over the weekend they will replace them. At least this is how it works for me. The longer they are left on the longer they react to your skin. So maybe this is the tape they are refering to. It's a small space that it occupies, but I have like seven pieces of tape on my body.
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I have one more treatment than 7 boosts. My boob is red and hot and glad for the weekend. The nurse gave me Domeboros solution and gauze to soak my breast. It really helps. Then I spread on the Miaderm and Aquaphor.
Life-rads are definitely not as bad as chemo. There's a women at my treatment center who's getting rads and chemo together but she has a different cancer. I don't know how she does it. But, you do what you have to do.
Swgee- I've never heard of anybody having their breast bandaged after treatment. They like air to get to it.
Have a great weekend everyone!!!
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Hi QueenKong, breast radiation is M-F in my clinic. Definitely get 2nd & 3rd opinions if you can.
bexH, just these last few treatments have I started noticing pain, serious fatigue, and my poor aureola was swollen last night! but it went down and now that I started my boosts I won't be getting as much fried each day so I think I can make it through my last 4. Hang in there!
cowpower, just don't let that ribbon hit my nipple, ok? keep it low… thanks for the encouragement!
elimar, thanks for your encouragement too, that's a great tip about keeping up the moisturizing for life. I already do most of my body already, adding in the breast won't be a big deal.
Shachar, Glad you got yr day off. I got a day off on Dec 25th and on Jan 1st and like elimar said, I really think it helps us with recovery and with compliance.
Has anyone ever read about aloe allergy? It's not going to affect many people but it does happen. I have not been using straight aloe but my skin is doing quite well with lotion, I just have redness. Aloe makes my skin dry and itchy so there was no way I was going to use it during rads since I might have the actual allergy. If aloe isn't working for you during rads, consider a couple of things, the first being before you even use it during radiation, test it on the inside of your arm for a few days in a row to see if your skin tolerates it when healthy. If you're already using it but you didn't use it prior to radiation and your skin seems to be not reacting well to rads, go ahead and do the aloe test and maybe switch to something else on your breast for a couple days while you see how some non-radiated skin does with it.
sonson, you will also be done before you know it! You hang in there too!
Is silvadene an ointment that contains silver? I had something like that around a couple winters ago and it was so great and cuts healed so fast! -
Thanks guys! Swgee, the tape I had on was seven penny size circles over where the put Xs to line me up. I also had two long strips of tape, one above and one below my breast. Within 3 days I had rashes under all the tape so they removed them and used tattoos instead. But the rash got fried in those 7 tape places and in the long tape places it is now peeling and raw. I wish I would have had the tats from day 1.
Though I now look like a red lobster with some areas of dry, grey skin (yep, that is gonna peel soon), I have little pain. It looks worse than it feels. But keep in mind I have a bolus pad for every treatment and their goal is to fry my skin. :0 Doc even told me that not using oils or not putting anything on before treatment didnt apply to me since they want me to burn! I, however, am being a bit rebellious and trying not to fry.
So when you feel discouraged about rads, just remember that it is better to do it now. If you get a skin recurrence like me, they will want you to burn.
I just wanted to make it through recon, and I did, but now I pay and am considered 3c. Big hugs to all of my warrior sisters!!! Let's kick some ca tail!!!! -
Did my planning appt yesterday and they did not say anything about tape, stickers etc. I got 5 small freckle size tatoos, 3 on the breast bone and one each on my side even with the breast. I thought they used them for lining up the equipment. Maybe they take the place of tape and stickers. Not really sure. Did not want to do the tatoos at first but they are so small and freckle/mole like that it was no big deal.
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Schoolmom
I also got tatoos and that was it. I have 13 treatments left of 35. A bit red now and very tired feeling. It is a weird tired. I don't think any type of napping would make it go away. I can't wait until Jan 29th. Started on 12/7.
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They still put little light blue dots on my tats because they say it shows up better under the light, but no big marks or tape. :-)
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8 more to go! 3 regular, 5 boost. My skin is red but no rash, no peeling, nothing open. I can't feel anything due to mx. I do think my flap (recon breast) is shrinking a little. PS says to wait 6 months after rads to see how it will end up.
I'm definitely tired. I just stocked up on frozen foods at Costco. Stuff the family can just warm up and won't whine about. Hubs was working from home but was on the phone while I brought in groceries. I gave him the stink eye the whole time because he couldn't help me!
I had my MO checkup and all looks good. She did say that rads can increase hot flashes and that is what I'm experiencing. Very mild compared to chemo and first few months of tamoxifen. I thought something might be wrong before I talked to her, but she asked me about hot flashes first.
For me rads has been so much easier than chemo. And I have the benefit of one year + between end of chemo and rads. Rest when you need to, friends. -
Oh, thanks for the laugh cider8 about giving your hubby the stink eye! I realized I haven't laughed much at all today, it felt kind of weird. I'll have to rent a comedy or go see one at the theater tomorrow or Sunday. Is anyone else paranoid about getting the flu this season?
I am so hoping the tattoos take the place of tape!!!:) -
Well today my armpit looked greyish black and tonight a thin layer began to peel, leaving pink but raw skin. Looks like the skin on top of my breast is not far behind, as well as some under my breast that started to peel in the fried rash. Will they REALLY expect me to do rads Monday with grey peeling skin and raw areas? Glad I got my silvadine today! Goodbye aloe, hello Aquophor.
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Shachar-my armpit looks like yours-greyish black and under my breast it's starting to peel too. I've done 25 treatments and have 8 (I regular treatment and 7 boosts. ) I don't feel so alone. Enjoy the weekend.
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Thanks fgm, I dont feel so alone either. If you want it to peel, just apply aquophor liberally like I did, lol. Great moisterizer causing it to slide right on off! That wasnt my intent but......I have no idea how many I have left. The goal was 25 plus boosts but he said that may be shortened. I have only done 15. It is good to know I am not the only one with grayish black skin. Whats up with that? I looked in the mirror tonight and cried for the first time since I saw myself after a double mastectomy. Life goes on....
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Shachar, sounds like the "toasties" are coming on now- hope it is just peeling, not painful. Aquaphor will work, but use old or cheap clothes, as it is almost impossible to get out once it stains stuff. If you start to get sore, just remember that you really will heal quickly, and dont hesitate to ask for meds if you need them. I am two weeks out now and have only a tiny open area that doesnt even hurt any more. It will end soon, I promise. As a side benefit, aquaphor is working quit well on my forehead "worry lines."
Interesting day today- had some pain along the incision from a scar revision surgery I had in October and called bs, who is super nice and told me to come in whenever I wanted. I thought it was rads related. I got there about an hour later and he extracted about 1 .5 inches of suture material that had broken off when the rest was removed. Friggin' OUCH! Feels great now, however. Also got to take my son for wisdom teeth removal. It was nice to feel like the mom again, even if that means half our household now has prescription pain meds. He is doing fine tonight.
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