Winter RADS 2012 Club...Please come join the fun!
Comments
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Cypher, it could very well be from the rads, especially if under your arm is in the field that they're zinging. I get pain off and on and sometimes it's pretty strong, but it doesn't last long. RO told me It could be muscle tightening, or just unhappy, cranky tissue. And in the breast, it could be breast tissue reacting to the rads. There's alot of tissue damage, superficial and deep, going on in the course of the tx. I've heard from lots of people that ibuprofen helps. For some reason, not sure why, I've heard not to take tylenol. Hope you feel better.
Chickenlady, I go for my first boost tomorrow. So happy that the rest of my breast can have a break! It's getting pink, pink, pink. Do you lay in a different position than the rads before? Tech told me that till now I was getting bombarded with photons that penetrate really deep and the boosts are "only" electrons, that are much more superficial. Oh well, whatever it takes. Just want to get to that magic number 30!
Cowpower and cider, congrats on the birthdays. What a nice addition to the holiday celebrations!
Have a good, uneventful, SE-free day tomorrow, everybody!
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Hello ladies! I'm new here! Just had #16 rads today and 14 to go! It takes 15 seconds! Starting to turn a little pink. But so far so good and easy. Hang in there!
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Outdamnedspot, I don't think it's the positinoing -- that's a different kind of pain.
Aliyahgirl -- it feels sort of like that, like it might be damage to the tissue. I'm just so paranoid now -- oh, sorry, I mean I'm such a hypochondriac now -- that I like to understand waht these things are. It's so easy to imagine it's something scarier.
7 down. Long way to go. I can't wait until february!
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Cider, have a blast with your bunch of girls. I am planning a simple dinner, just family and my sons girlfriend. This is a milestone for him as he has been notoriously and comically unlucky in love in the past:)
Sounds like a few of us are coming down to the wire- I am on 29/33 today, fatigue setting in a bit, but it is more a sleepieness than the numbing fatigue of chemo. I also have an open area under my arm, which will unfortunately be included in the five boosts I start today. No matter how bad it gets, there are only five more, so I am very thankful that my skin held out this long. So for now, its saline soaks 3x per day and lots of snoring in the recliner! For all of you in the early days, it does go by fast, faster than chemo , anyway, lol. -
Cypher, I finished rads a week ago, and had pain in my armpit and the breast too. My armpit is feeling better, but sometimes my breast still hurts. I believe it's from the rads, because it's not as bad as it was even a few days ago. Hang in there!
My skin is finally not looking as red, and is starting to peel. It feels rather fragile though and is getting really itchy. I'll take itchy over painful though! Still loobing like crazy! -
Hey ladies, new to this thread. Diagnosed in May of this year with Triple Neg. IDC,Stage 2. Had a lumpectomy in June, started A/C in July, 4 cycles. Just had my last Taxotere 2 days ago {had 4 cycles).Start radiation in 3 weeks. It has been a LONG ride. I will have rads 5 days/week for 7 weeks. Ready to get started. Gonna ride along with everyone.
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cypher, It is not unusual to have twinges in the breast and SNB area even up to a year out. The nerves have to grow, heal and re-establish themselves. So if it is momentary pain, it could be that. But also, rads is now battering your already injured area and the underneath layers of tissue do get sore as the effects of rads builds up over the weeks. Then, as some lymph fluid comes back to "heal" the injured tissue, you can also feel a soreness from the fluid pressure. Long story short, soreness is normal, however always mention it to the doc at your weekly check.
As far as what kind of SEs you get from rads, you will see the REAL story unfold HERE. You won't get it from your RO or the techs. Nine times out of ten they try to pawn it off as something else.
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Fishinurse, if you are finished with chemo the bumpiest part of the ride is over! Enjoy your treatment break, grow some hair, and try not to dread the rads, seven weeks sounds long, but passes quickly, hopefully with minimal ses. I am off to 29/33 today. It was hardest at the beginning, before I got into the "groove." But now I practically nap through my sessions.
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LOL, cowpower, now you've let the big secret out...after all the scary anticipation, rads turns out to actually be quite boring.
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Hello everyone! I'm just reading through the week's posts. It's comforting and informing so THANK YOU all for sharing no matter what it is!
Here's me so far:
I've ditched the aqueous cream and use aloe Vera, magnesium and some coconut oil at least 3x a day. I massage both breasts and tell them I love them and i say other positive things about them and about being a woman. Outcome? I'm a little pink. I had a small blister on my nipple but it disappeared in a day. It's pretty swollen - and so is the other one....?! Sympathy sister!? 😉
I'm doing this as a solo mission...I take my self on the train 45 mins each way each day. I meditate and do yoga every day. I cook good food. I take a cocktail of supplements. I'm reading Woman's bodies woman's wisdom and I'm loving the level of healing along side the rads. Ive cut my work load in half. i feel blessed i can do that. I'm at 8/20...
I have a funny -yucky metal taste too...I thought it was from the selenium I'm taking but I started taking it about day three of rads...
Re PAINful/sore/lack of mobility SHOULDERS... I'm a Pilates Instructor- if I can help anyone with exercises or information about healing the muscle tissue damaged from surgery, and also "getting cranky" from the rads I'd be more than happy to... Even tho it's a tricky forum...so my "simplistic advice" is to find the balance between resting and moving. I truly believe that movement heals...
3 times a day do:
some arm circles, shoulder circles (finger tips on your shoulders move your elbows in circles)
Some push ups... Standing with your palms on the wall in line with your shoulders -a few with the elbows narrow a few wide.
Stand with your arms folded behind your back...holding elbow to elbow. Take deep, cleansing breaths.
Stand and try gently to touch your fingers behind your back...onetime from overhead and one from under...
If you have a theraband (physio band) look for videos on YouTube for rotator cuff. I will try to find one that is good and post a link...
ok I did go a bit there...but hope it helps. It's good to do these movements or others that we enjoy even if we don't have pain or other symptoms...things can lurk about...don't we know...and if nothing else taking the time to do something positive for ourselves inside such a difficult situation is SO important!
Sending happy healing vibes in case you need some today! -
cypher - I have also been noticing some pain in my breast that is new. I've had the sharp pain of nerve regeneration, but this is not the same. This is more of a dull ache that lasts all day. I'll mention it to my RO next Monday.
cider8 - I'm on 15 of 35 today. I've definitely noticed some swelling on the side with the rads. I sure hope it goes back down when rads are done! Does anyone know?
I get to take Christmas Eve and Christmas off next week. The center is open on Monday, but my RO said I'm getting too burned and need a four day weekend. I'm definitely feeling the fatigue and crankiness more now. I am working full time as well and couldn't take off because I used up all of my vacation with my surgeries and doctors appointments. Yesterday, I was told that a few of my coworkers donated their leftover vacation time to me.
So so thankful! I think I'm going to take an hour a day to go to the gym for the next two weeks. I know a little exercise would benefit my healing and my mood.Also, has anyone else skipped a period or had bad acne? I'm 3 weeks late now and my face is horribly broken out. My RO tested for pregnancy and I'm not. She said its not a side effect from rads, but probably just stress. She suggested going to my gyno to get my hormones checked.
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Just spent 2 hours reading through the threads for info. One more chemo to go in Jan. and then start radiation end of January. Will check in with you for more info. Thanks!
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Thanks Zahara for the workout suggestions. I try to do something everyday to make my arm and my body stronger. This will give me a few extra things to try out.
Welcome to the group ksgirl and fishinurse. It has been a long ride and I'm sure ready to get off this ride. I can't see the light at the end of the tunnel yet, but I'm getting there. I've only done 7 of 33 treatments so far. So some of us are just starting and some of us are lucky enough to be at the end of the journey. Although sometimes being at the end comes with it's own set of concerns.
jennsmc-that's great that you got some time donated to you. I haven't had a period in a while, but then chemo and tamoxifen have pretty much shut down my ovaries and I expected that. If you haven't gone that route then going to your gyno would probably be the best thing. Stress can do funny things to your body thats for sure. But exercising like you plan on doing should help with the stress. Good luck!
Allurbaddays-We have to celebrate the small stuff at this point, right? 3rd way through...woohoo! I'm getting there too!
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Hello all, I start Radiation this afternoon. I had my last chemo, Nov 5th. Had to delay start of rads, due to my Mammogram being yesterday. (lovely insurance wouldn't let it be 2 weeks early from that 6 month mark LOL). Everything was clear on the mammagram, thank the Lord! It was an answer to a lot of prayers.
I have really enjoyed my 6 week break from chemo, instead of the normal 3 weeks. I've had a month to feel GOOD! Been a little tired at times, when I over did, but otherwise felt good.
I have a question on the radiation. (I had my mapping done last week btw). How long before the "tired" sets in?
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Two boosts done and two to go. I wasn't really sure what to expect from the boosts, and got several different messages about them. For my boosts, I'm in the same position, but the machine stops at three points to buzz and beep instead of the usual two.
I find I get more tired as the week goes on, but it has also depended on how busy I am each day, and the amount of stress present in that day
I was feeling depressed about the possibility of having to go back to finish after Christmas due to the impending blizzard, but my DH took Thursday and Friday off so he can bring me in the BIG TRUCK...which will get me through the snow. I know he's as anxious as I am to be done with this!
My skin is looking pink, with a nice little case of chest acne... my RO said it would clear up within a week or two. She reinforced the idea of lubing the boob, so for those of you just starting out... keep lathering on the lube! I'm liking miaderm...aquafor was just too sticky for me...although I did use it a few times at night.
And... I GOT my period last week...it had been six months! oh joy...radiation and menstruation all at the same time.
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Chickenlady...I was glad to see you posted about the 'boosts' as I wondered what that was all about. I don't think I saw it mentioned here before, but there is a lot to read!
I am curious as to how much 'beam time' everyone gets per session. I just finished 11/16 today. I guess you could call it the Canadian Protocol as I am in Canada and my RO told me she worked on that study when it was done.
Laying there I have calculated that I get about one minute in beam as I count 15 seconds, 7 seconds, 4 and 4. Then the machine moves up and over me to repeat that sequence.
Almost falling asleep as the techs have been covering me with a heated blanket...bliss!
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I think I must be pretty tired since I actually cried when I read Jennsmc's coworkers donated vacation days to her! Such thoughtfulness.
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A few questions for this most well-informed group. I am still doing taxol chemo, but my MO says the next step will be radiation treatments, as I had a lumpectomy. Is it usual to get a mammo before beginning rads? Has anyone ever contemplated getting a mastectomy to avoid having rad treatments? I am in NY, and there are hospitals that have equipment where you can lie prone position, and the rads are more focused directly to the affected breast. Has anyone experienced this equipment? I am so undecided about my next step. In a way if I had a mastectomy, and the reconstructive, it would be over,, but time consuming to wait for the tissue expander process. How did everyong decide what to do? Is there a 6 or 7 week break between chemo and beginning rad treatment?
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Outdamnedspot- I have even less time than that, I think. Lying there, I count to about 10 seconds (1 one-thousand), then it waits a couple of seconds and repeats while in the same position. Then the machine switches to a different position and does the same thing again. So, I guess it's a total of about 40 seconds total radiation? They also do an xray every week, right before they start the radiation. I am so jealous of that heated blanket! I just get to 'hang out'. Literally.
Waiting- I know some ladies on these boards choose mastectomy over radiation. Hopefully someone else around here can point you in a good direction for more information.
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Momtopiglet, I was curious as I was told that the "Canadian Protocol" was developed to give more radiation in less treatments with the same outcome. I think they thought that 16 longer treatments was equal to anywhere from 25 to 32 'regular' treatments. By reducing the number of treatments, it is easier on the patient.
So, it appears that I might be getting a bit longer overall. Anyway, I am glad to be nearing the end as the 80 minute drive each way is getting longer each day. That and freezing rain forecasted for the next two days
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Waiting, I had a bmx as I didn't want to do a lumpectomy and radiation. However my margins were not clear, so I had to have rads after all. I had expanders placed at the time of my bmx, as I was going to go the implant route, but now I'm considering flap reconstruction and have an appointment set up with a PS who does them to explore my options.
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Well, finally did rads #1 today! I was hospitalized for the flu and severe dehydration for two days, so got discharged and ran over for my first rads a day late. Besides being a little stiff from lying on the table for 45 minutes (had do do lots of xrays, more marking, photos with a camera and positioning) it was pretty uneventful. My left shoulder was starting to hurt from being there for so long but that was the worst of it. It's awesome that they have this lighted mural all over the ceiling of blue skies and clouds, and then the machine is also light blue so it looks like a UFO coming down to zap me, hahaha. I slathered on some calendura followed by aloe afterwards and away I went. I was a bit surprised that they used this thing that looked like a gel mouse pad over my breast. They said it was to keep the radiation close to the skin surface. I have silicone implants in place so maybe that is why? That thing was cold. All of this worrying and I'm so glad the first day is done with only one tiny tear. That might have fallen from those clouds, though. I am scheduled for 28 rounds so 1/28 completed. I will then have an unknown number of boosts after they see how it goes. 3 days this week, 4 next week due to Christmas, then 4 the following due to New Years. I think a 4 day week followed by a three day weekend would be an ideal schedule, haha. The staff is really nice and I feel good about this. So thankful for all of my rads sisters here.
Oh, and I get a heated blanket, too! They also put warm towels over each arm so just the one boob is lying out in the cold all by itself.
Waiting- I had a bmx to avoid rads and I had clean margins but less that 1 cm. I had a local recurrence to the skin just below my incision (small penny size area of red bb size bumps). So.....here I am in rads.
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I appreciate the input about the breast pain. It sounds … not particularly worrisome.
Waiting, I think standard radiation machines are like the ones you describe. They are quite focused. From what I can tell, mastectomy + reconstruction is far more intensive overall than radiation, the recovery can dragon, and reconstruction does not sound like a picnic to me. You might go over to the mastectomy threads. There are lots of other reasons to do the mx instead of the lumpectomy though.
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I have just two boosts left and then dunzo! Today is 31/33. My skin has really improved in the last week since starting boosts, less pink, though I have a very dark tan area right where the bra rubs under arm, when I do deign to wear a bra, that is. RO switched me over to cocoa butter lotion now. I also have itchy areas at times, but mostly under the stickers and can't wait to have them off! Had a one night reprieve from them after last day of full rads, tech said not to go too wild, lol!
Radiation IS boring, and I too have gone from slightly tense to very sleepy on the table! For boosts, I'm on my side with a pillow between knees and a long pillow along my back propping me up, right arm raised. Even though the table is hard, I could definitely go into snooze mode. The machine doesn't rotate anymore, just comes down close to breast and does its thing. RO suggested cami instead of bra as my family heads off for a Christmas ski trip. I will admit I'm very tired, between radiation, xmas activities and preparing for this trip. I may take a day and let the family go off and just stay by the fire chilling. Good luck to all who are starting, it does go by fast believe it or not.
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No one has asked about this yet, but read about it now and be prepared for later:
Some of you may experience a soreness in your ribs that can last for years. Yes, I said years. My RO still will not admit that this is caused by rads and tries to deflect if off as if surgery is the cause, but my lumpectomy was a small area and the rib soreness was pretty much the whole rads rectangle.
Just so you know: By soreness I don't mean throbbing pain. It is mainly a different sensitivity to pressure than on your non-treatment side, so if you press the treatment side ribs you will notice kind of a bruisy sore feeling moreso than the other side. Mine lasted about two years, but it finally seems to have resolved.
I have read about this a number of times on this discussion board, so I'm not an isolated case and I believe a certain number from this thread will probably experience it too. Don't panic if you are one of them. It's just another thing they don't tell you about.
p.s. Congrats, heidismom, you are almost there. Will you finish on Christmas Eve then?
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2/28 done! My armpit looked a little pink this morning. Met with the rad onc today. I will be gettig the gel pad every treatment so my skin reaction could be more. He called it "enhancement". My treatments will be minimal 25 and then whatever boosts, up to 8, or 28 treatments and up to 5 boosts. Clear as mud. They may start me on some new cream Monday called R1 R2 with lactaid or something in it. Anyone heard if that? Anybody else use this gelpad all the time? I guess I have to be different.
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cypher, I asked my RO about a little extra pain in the pec I've been having and he said that "yes, it can be from the treatment". We know in my case that the x-rays are hitting as far in as a little corner of my lung so of course it's hitting some pec. Doing the easy rubber band exercises the PT-ist gave me seems helpful so far, but I'm only a third done.
Protein intake question - I've heard it repeated that thru chemo and rads we are supposed to eat plenty of protein to help rebuild everything being torn down as it were. Does anyone know when we can start easing up on the protein intake? A month after rads are done? 2 months? any clues?
Chickenlady, so unfair to get your period now. I had a nightmare last night that I had mine…
outdamnedspot - I get about 20 seconds total with the beam coming from my left and then it moves and gives me a bit less than that coming up from below my right side a bit. I wonder if there is some variation between machines and in how high they set the beams.
ooo heidismom, I'm excited in anticipation *for* you. This probably means I am going to be completely joyfully bananas when I am on my last couple days! -
...then again, maybe I should consider keeping my protein intake up long term considering this article: http://foodforbreastcancer.com/news/low-carbohydrate,-high-protein-diet-inhibits-mammary-tumor-growth-and-development-in-mice
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Waiting-I only had a three week period between chemo and rads. And I think the lumpectomy vs. BMX is a very personal thing. For me I didn't want to lose the breast and I also didn't want to take so much time from work with surgeries. It seemed like a no brainer at the time. I had clean margins so I can only assume that I wouldn't have had radiation if I had gone the other route, but who knows. They may have suggested it anyway. Many people get radiation on top of BMX...you just don't know.
I haven't timed my treatment. I guess I should. It doesn't seem to take very long though. I wish I got a heated blanket, but then it may just give me a hot flash so maybe it's best if I don't get one.
And I really like the idea of stars on the ceiling...wish my office had that too.Sandee-I think the "tired" thing is very individual. Some people experience it and then some people don't. I think if you exercise while doing radiation that it's 'suppose' to help with the fatigue. I've only had 8 treatments so far and I've not had any problems with fatigue, but it may be too early to tell.
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Sonson, Thanks for the reply.
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