Summer 2013 Rads
Comments
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I met with my RO today and she said that the sweat glands under my right arm will be mostly dried up with the radiation so not using deodorant there shouldn't be a problem. I sure hope she is right! I get the bolus plastic-y towel thingy each day to bring radiation closer to the surface of my skin. My RO says she wants to do that the whole time if possible. She also said I can most likely expect red skin because of it. Booooo. She banned swimming and sun exposure. I have a raft that holds me above the water (though I can dangle my feet in) and a huge tree that shades the pool, so I plan to enjoy some summer relaxation that way. Living in Phoenix, being in the water is such a huge part of our summer life.
I made a colorful calendar and am crossing off the days. My daughter gave me a CD this morning--Lullaby renditions of Coldplay songs. We listened on the way to radiation and back and it was very soothing.
I am looking forward to meeting with the integrative medicine oncologist on Tuesday. She had great ideas about supplements etc. to help me through chemo. If I learn of anything to help through radiation, I will post it here.
They gave me aloe to use on the radiated area. I also have an aloe plant off my patio and it does help when I've burned myself on the oven so we'll see. So far I've felt a little heat and I thought I saw some redness, but when I looked at the nonradiated side I saw some redness there also. It may be the temperatures near 100 doing that!
The lilacs sound wonderful, Idesim. I can close my eyes and imagine that smell. My jasmine just finished blooming and I miss the sweet scent.
So glad, and a little jealous, that you only have to do 4 weeks, Melody. That is wonderful news!
Good to see Nancy moving forward as our trailblazer. One more day this week and then the weekend off. Do all of you get weekends and holidays off also?
Hugs
Linda 2/30
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Finished chemo today, and was met with the surprise that the RO I saw in Feb no longer comes to the center where I'm being treated. Wasn't really sure what what to do, but have made appointment with new RO, at my cancer center (seeing him on May 29th).
Like several of you, I'm worried about additional risks of left side radiation (I had unilateral MX on that side). I have the additional complication of having been born without a pectoral muscle and may have some abnormality in my chest wall too. Just started doing some more in depth reading today and sounds like I should be a candidate for some of these methods you've mentioned (bolus, breath holding) too. There just doesn't seem to be much separating my skin along the incision from the chest cavity, with the lack of pectoral muscle. Hope whoever I end up with as an RO is willing to customize a plan for me. I actually wonder how much benefit I'll get from irradiation of the incision/chest wall, since I had good margins - lymph node area is another story and I know I need radiation there. -
Lin43 - weekends an holidays off .. so glad. Interesting about the sweatglands on the radiated side drying up.. would have felt better had they told me that.. so far though no deodorant on that side doesn't seem to be the problem I thought it would - but here in south jersey we are just starting to get hot weather - not sure how this will be on a hot, humid day..
caitlin61 - hope your new RO works with you - and feel sure they will.
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Well I had my first treatment yesterday. The breath hold thing was actually much easier that I thought. I had to hold for much longer times during the sims than I actually did during the treatment.
It has been getting warmer her in NH, but so far the Tom's deodorant doesn't seem too bad. Initially I had bought the Pears soap they told me to, but the smell is really medicinal so I just switched to Dove unscented which they said is ok too.
Question for all of you already undergoing treatment. When I go to treatment we use 2 angles. The first from the top is fine, but when the beam comes in from the side it feels like little needle sticks all along my breast bone. Do any of you notice this as well?
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Tinkerbellz I had my expander placed at same time as my mastectomy and all fills finished before chemo. PS will not see me again until after rads.
Nancy: I've heard from other ladies to wear a cotton tank top under the bra so you can use the aquafor as mush as you want. I was a bit surprised that the paperwork from my new RO says to not use anything except aquafor or aloe. If some of the products that have been recommended have helped these ladies save their skin, I'd sure like to try them.
Here in the infusion room getting my LAST round! Have been coughing my head off. I think my immune system is trying to say enough! -
Heart2930, I also had my first treatment yesterday. I was nervous about holding my breath for 45 seconds, but you are right, it was quite a lot shorter for the actual treatment.
I didn't feel anything during the treatment, but I was a little tender already yesterday evening - didn't think I'd feel it so fast, but my breast is still drying up from breastfeeding so maybe it's a little more sensitive.
Are you on a 33 treatments schedule as well?
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Wow dizzy! I'm so glad that you posted! I was wondering if you have had any difficulties with the tissue expanders? Complications? Advice? How many cc's did you get for how many fills before starting rads? Have rads affected the healing at all? Any capsular contraction yet? Btw, what's an infusion room? Are you still on herceptin?
Thank you to all of the welcomes ladies! -
I wear a cotton tank under my bra so I can use the Aqua all the time, plus I want to get used to it in hopes of being able to wear a bra the entire time.
3 down for me.. I don't notice any redness or darkness in the areas, but I'm sure that will change.
Heart, no I don't feel anything. Not sure I would like to feeling that too much that you describe... I would say something. Congrats on getting through your first
I'm not noticing a problem with the no deodorant yet, and I've been sweating off an on.. so hopefully that lasts!!
Congrats on last round Dizzymom!!
Looking forward to two days of not having to go to the hopsital... woo hoo!
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I want to thank you ALL for posting......I only start chemo on Tues., but rads will come end of July and just hearing all your stories, tips, etc make me feel better...I too am a left sider and worry about the heart, lung thing.....tried to hold my breath and only made it for 28 seconds....I better work on that...lol
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Hi ALCS97- I asked the radiation technicians about the pain, and she said it is just static electricity. She said people tend to feel it even more in the winter. Today it was more humid and there was no pain. Yeah! Summer is starting so hopefully no more pain. The 45 seconds is much easier that I thought too. Do you get to wear the glasses with the graph to see where you need to hold your breath to? I am actually having 30 treatments. 25 regular and 5 boosts.
Hi Idesim- The pain was not actually so bad. It was more irritating and uncomfortable than real pain. So I wouldn't worry about it happening. -
Idesim,
Ok...I am not sure I understand. You wear a cotton tank under your bra. Doesn't it get all bunched up and uncomfortable? Is it a thin tank? I have been wearing a sports bra since my lumpectomy and the post surgical infection that came after it. I would love to switch back to my regular bras, but the aloe stuff they have me using is pretty goopy and I don't want all my bras to get stained. If it is a special really thin tank top could you please tell me the brand so that I can try to find some? -
I am trying to understand the tank top under the bra also.. isn't it uncomfortable and bulky? I would love to wear the aquaphor all day and night but its so goopy and sticky.. my clothes would be stained.. unless I get the hang of tank under bra..
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My RO's nurse told me I could wear bras just no underwires. My step mom who is one year cancer free suggested I wear the shelf tanks whenever I could so thats my plan since I'm a little too old to go braless and its' not the 70's.
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Has anyone started Tamoxifen? I see my MO next week for my prescription and I'm feeling kindof squirmy about it. He said among the other wonderful side effects it causes mood swings and depression. Same thing with the chemopause I'm in, it sounds kindof scary
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OK, no I have not started rads yet. I had my last round of chemo today. I start rads in 3 weeks. So I have no experience with the tank top thing. I have just heard from some of the ladies in another thread that they did that while they were getting rads to keep cotton only against their skin (you could wear a cotton bra) and so using the aquafor didn't get all over their clothes.
I don't know how many CCs I had. I know they were 50 each, I just can't remember how many. I think 6, but maybe only 5. I only had a single mastectomy so only one expander and no complications. Just a whole different kind of pain after the fills, but now no pain at all.
Sorry if my earlier post was misleading. Have a good night everybody!
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Melody, I started Tamoxifen almost 2 weeks ago and I was terrified to start. So far I have not experienced side effects.. in another thread I was informed that they take a long time to kick in.. so you should be ok through your treatments... at least I hope you will be!
Actually the tanks I have been wearing are hubby's old Fruit of the Loom white tanks that shrunk in the wash and he passes on to me lol. They are rather thin from lots of washings and probably because they are underwear. They are not as bulky as I thought they would be and it is undetectable under clothing. This way I can have the Aqua on 24/7.
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Actually, I've also used a couple of my own old ribbed tanks and that was fine as well... I thnk those were from Gap or something.
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Hi Melody46,
I am scheduled to start Tamoxifen the day after I finish radiation. I am kinda squirmy about it right now too, but for different reasons I think. Tamoxifen has a very small chance of causing endometrial cancer. I have had a partial hysterectomy but still have really bad endometriosis. I am really concerned about this. Since I have had a partial hysterectomy I won't show any symptoms of endometrial cancer until it is too late. My MO researched this for me and only found 2 cases studies ever when someone with a hysterectomy and endometriosis turned up with the cancer. I know 2 cases are not a lot but they are not zero either. So I don't know what I am going to do. Since I had a dirty margin after surgery that we could not get clean the Tamoxifen is pretty important for me. I have a consult with another doctor or Monday to discuss this but I am probably going to take the Tamoxifen. -
Thanks Idesim I will try that if I decide to switch back to my regular bras.
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I had a lumpectomy on March 21 (no node involvement) but did not get clear margins. On March 28th they went in for a second time. They thought they had clear margins but the pathologist looked at it again and said a tip was out of the margin. The doctor suggested chemo, rad, and a estrogen blocking pill. I chose to not have chemo. I am in the middle of radiation right now. So far no SE's except tired in the afternoon. I am taking a exercise class before I go to rad's...this has helped me emotionally a whole bunch. I put a cream on my breast that the doctor gave me as soon as I come out of radiation each day. When I get home, I slather aloe vera on my breast ( my plant looks awful - haha)...so far I have not had the redness etc.
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Thanks Heart, I'm heading out for the weekend. Peace to all
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Hi all! What a batch of wonderful information you all have posted here. I am so glad to have found this thread.
I am still waiting for my first rad. My lumpectomy surgery resulted in a seroma/hematoma and my RO didn't want to start rads as it was on my last visit to him. I get to see him in about ten days and hope we can go ahead with this. Long periods of time between various procedures scare me to death that the creepy little mets are having a world tour of my body. I had my last A/C chemo in late Dec, and didn't get an LX until early April. The LX revealed a 3mm residual carcinoma, but with clear margins and negative lobes. Now I am waiting again, this time for the rads. I have lucked-out with a great RO, though. I just want to get this over with and try to enjoy what will be left of the summer when it is done.
Sharon, my aloe plants are ready to go to work. All I need are the rads to go with them...sigh.
Just realized that my signature data are wrong. There were a few nodes positive for cancer at the very beginning which are now neg. Need to get around to fixing it.
Thanks to all.
Carol
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Sorry you have to begin with a new RO, Caitlin. I am sure you will have your questions ready after reading these boards! I also had clear margins and thought I might get away without doing rads but it was high grade, in my nodes and multifocal so here I am. I get the bolus every day and have had a slight pinkness in some areas but so far it goes away by the next morning. I just finished 3/30 -- one tenth of the way done. I did chemo for six months and am doing Herceptin but somehow the thought of radiation bothers me even more. Perhaps it is because I had what my oncologist said was an amazing response to chemo and the best post mastectomy pathology possible, and I really thought I would be done (except for the year of Herceptin). I am so thankful for the good pathology but wow, this is such a marathon!
I slather on the gel and like the idea of the tank under the bra. I saw a study that said that calendula may help with radiation dermatitis. Here is the link: www.mskcc.org/cancer-care/herb/calendula.
Looking forward to enjoying the weekend off. And next weekend we have Memorial Day off as well. I know that the more days off the longer this will drag on, but don't we all need days when we don't have to drive to the cancer center and get zapped!
Gentle hugs to everyone
Linda
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Posted new pic to match my name --- what do you think?????
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I'm not sure how to do this post, but here goes. I hope I will be starting partial breast radiation in the next two weeks, likely using the Savi device. I had my lumpectomy on May 7 and the cavity where the Savi device is inserted for internal radiation has not healed enough yet to begin that twice a day for five days process.
. I see that I wrote IBC on my signature line :-). OK, it's IDC and I did have a SNB.
I'm nervous because I really want to do this partial breast radiation and the cavity has to be such that at least one of the different devices completely fills it, and from the scan on Friday, I left feeling a little doubtful. I find myself more anxious about radiation than anything else I've encountered. And I should be grateful every day but I'm having a hard time getting in touch with that feeling.
I wish you all the the best for your radiation. -
Lin43, too good points you made.. 1) 3 days off next week and 2) we're 1/10 of the way through! Loved hearing both of those lol.
ChickaD.. it oozes personality.. I love it!!
Hi Sydneyluv. I am with you... radiation has made me the most anxious yet of all the procedures... maybe because it's been such a long road to now.. who knows. The Savi device sounds intriguing.. I've never heard of it.. not surprising since I would not have had cause to know may of the terms and procedures associated with BC before now. How does it work? 8 days doesn't seem long enough to have healed enough to have something inserted.. ouch.
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ChickaD - wow - that new avatar is so festive - it lightens up the mood here
welcome sydneyluv!
4 down 26 to go... yesterday I was so fatigued - I hope this isn't a sign of things to come - also my incision started to leak a little again.. guess my skin is weakening ..
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Hi IamNancy,
I am only 2 down with 28 to go and yesterday I was fatigued too. By late afternoon my legs felt like they had lead weights in them. Already started to burn too. I am a little concerned because I still have a long way to go. My nurse practicioner said some people start to burn on day 1. I was kinda hoping I was not in that group, but oh well. At least next week we have 3 days off. -
Heart - sorry you are going through this too but I am glad to know I am not the only one fatigued so early.. today is better.. and like you I am looking forward to 3 days off next week..
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Hi ladies - I'm Peg. I am starting day 14 tomorrow and I have 6 more to go after that. I am just starting to notice a little difference in my skin - it just started to pink up a little. I have noticed the difference in my fatigue and stamina though. I am really tired in the late afternoon. I guess it doesn't help that I broke my left arm 3 weeks ago (fell down some steps) but thank goodness it wasn't my surgery arm....I was so nervous about that. I am hoping the black cloud will quit following me! I have been reading your posts though - hope you don't mind if I join you! Happy Sunday!
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