Anyone getting ready to start Radiation in Fall 2016?
Comments
-
Done!
) Well, actually, I was done last week but I've been so fatigued that I'm just getting to logging in and posting that! Finished last Thur with my boosts, got a certificate, and got to ring a bell, which was cute. I had concurrent low dose cisplatin chemo as a radiosensitizer so my SE's were on the worse side (redness, peeling and weepy skin under my armpit, itching, but the worst was the fatigue. Crazy! I just slept anytime possible over the last week...) but I'm healing now.
For all of you just starting, know that the days will pass and before you know it, it will be over! Hang in there and best of luck!
)
0 -
Reflect: This link is to the thesis the RT did for her Bachelor of Radiation with Honours at Otago University https://ourarchive.otago.ac.nz/bitstream/handle/10... There is also this study done and published in BJR https://www.ncbi.nlm.nih.gov/pmc/articles/PMC34737...
I'm curious that many of you have quite long treatment times compared with what I have experienced. Even with the setup and marking, it only takes about 10 minutes. Is this because of the amount of radiation you ladies need to receive i.e. a larger area? Also Sabrina you mentioned gripping bars while you have your treatment. Is this the standard way of getting your arms out of the way? Here we have little holders for our upper and lower arms, so arms are very relaxed.
0 -
My treatment times were 10 minutes or so and went by fast. I was laying on my stomach with the breast hanging down. Tomorrow is my last whole breast radiation and Friday begins 4 days of boosts. I can't wait to be done.
These are my tips for a successful treatment outcome: 1. sleep as much as your body wants (I know many people can't do that, but it helps to heal the area), 2. drink plenty of water and other liquids, 3. eat your protein 4. lots of fresh fruits and veggies (farmer's market if possible), 5. do something for the entire time that you enjoy - I am a jewelry designer, so that was my focus, 6. find organic calendula salve - it has saved my skin. 7. find a long series on Netflix to occupy your mind and watch the entire program - it helps pass the time and keep your mind occupied, 8. be a homebody - stay away from high traffic areas where people are sick and coughing because you want to be at your best during treatment. That is what worked for me and my doctor told me that I had the best skin he had ever seen at this point in treatment.
0 -
AmusingSoprano, for the arms we had these large bags that they put under us when getting set up, and fill them with foam, so it shapes to hold your head and your arms up above your head. The walls are lined with the hardened foam pillows and the techs just go down the row each day putting everyone's up for them.
I had to make several adjustments going through. My skin didn't fare that well but my RO said he had seen worse. Mine is very discolored now - I'm fair where the sun doesn't touch and I turned shades of pink, red, dark red, purplish, brownish, and very dark brownish, almost black in places. The area feels hot to the touch, swelled, spotted, and some broken and weepy skin.
I started out in soft bras, switched to camis pretty quickly. I stayed in them until the last 2 or 2-1/2 weeks, when I switched to very soft, very loose t-shirts with sleeves that cut down on undersarm skin touching. I cut pieces of soft fleece and rolled them to tuck under my breast (what's left of it - it just keeps the fabric roll in place) to prevent skin on skin contact and keep it dry. I used cornstarch where skin touched skin, especially through the first weeks until skin broke. Very soothing. RO prescribed silver sulfadiazinine once skin got really bad, 2x a day and it's already healing though I'm still getting boosts.
I think my skin was so bad only because I started with a weird reaction burn. I don't think the rads alone would have done this badly. So maybe some of what I did will work for others who might not get that bad.
It did go quickly, looking back, but it seems like treatment consumed my life. Surprisingly, I'm not that tired today, and have had several good days. I scheduled two half-days to work next week (tentatively) - I think I'm going to see how half-days go for a week or two, because my fatigue has been up and down and severe at times, and the doc I saw the other day told me it could take as long as a few months to get past. I'm going to try to keep my options open, just in case, but I'm HOPING the worst of the fatigue is behind me. I'm going to try to start an exercise routine tomorrow, if I'm still up for it.
0 -
LoveMyVizsl… I used to be a huge fan of underwire bras but I tried the wireless t-shirt bra from Victoria's Secret and I don't think i'll ever go back to underwires now. Still, glad you managed to get back into one. Just another sign that life is getting back to normal!
thereisnode…Thank you! I can't believe I was so nervous. Turned out not to be bad at all. Wish I hadn't so much time stressing about it.
ayr1016 woohoo *happy dance* so happy for you. I didn't ring the bell for chemo, but I guess I'll have another chance tomorrow bc we do have a rads bell, too.
So grateful that so many of us are wrapping up our cancer treatments!
SerenitySTA… That's what I've been doing, but after the 30 min mark, they still go numb. It was a bit faster today, thankfully.
So one more day for me! I met 2 wonderful ladies in the rads waiting room. One just breaks my heart. She has lung cancer and is doing both chemo and rads simultaneously and the rads is twice a day and she's staying at the hospital off site housing bc she lives 3 hours away. Just really gives one perspective. I'm lucky to live only few minutes away, have a company that has happily given me 8 months of paid leave, and friends and family that have stuck by me through this entire journey. I told her to check out these boards. They've been so helpful to me. Not just for advice and what to expect, but a way to not feel so alone. Thanks, ladies, for all you've done!
Sabrina
0 -
TNpotato *another happy dance* Congrats, dear! I hear you about the fatigue. It has really hit me hard this week. My daughter came to visit at 6pm and I kept dozing off on her lol. Glad your skin is healing now. It's amazing how quickly it bounces back.
AmusingSopr… yep, pretty standard. They bind your feet and keep arms stretched overhead so you're not likely to move once they have you all lined up. Normally it wasn't an issue bc my regular treatments only lasted 7-10 minutes, but these last 5 days of boosts have been significantly longer.
Sabrina
0 -
Hi All - I need some comforting words! Starting on Monday and I'm nervous! Does the machine make loud noises when it is on you? I will have to do 8 breath holds for 10 seconds each. How long are the boosts? Are they much longer in terms of the time the beam is on you. I think I need those at the end. Still second guessing my decision and wondering if I should have gone mastectomy. This is hard.
0 -
Terri17 Trust me, we were all nervous when we started, but I promise it wasn't bad. My machine made almost no noise - a light whisper as it moved positions. As for boosts, the actual radiated area is smaller so quicker and beam is on you much less, but getting the perfect measurements/alignment can take more time than usual.
I know making the decision between both surgeries is difficult, but keep in mind that mastectomies have a much longer recovery time, and if you want reconstruction, several more surgeries. I'm thriled that I opted for the lumpectomy. Recovery aside, I still have full feeling in my breast and look and feel like my old self. Don't underestimate the benfit of that lol we lose so much of ourselves during cancer treatment, being able to retain any of it makes a big difference.
Best of luck on Monday!
Sabrina
0 -
So glad to hear everyone is coming to the end of the rad cycle! I just finished 2/25 and so far so good. Because of Nevada Day, I don't go back til Monday! bleh.
It really is not as bad as you think, as everyone mentioned. the machine does not make that much noise, sometimes I find a spot on the ceiling to look at or just close my eyes. we do not have any pretty lights or fancy stuff on the ceiling to look at!
Happy Halloween Everyone!
0 -
Terri, my machine made a beep noise when it was on. That's how I knew it was on, and for how long. I had to exhale and hold it out for 15 seconds for two weeks of treatment. I think holding it in is easier than out. You can always change your mind and have a mastectomy, but I wanted to try a lumpectomy first. Glad I did.
TNPotato, congrats!!
BBG, I had a pretty tulip garden on the ceiling but I couldn't look at it because I had to hold my chin up and to the left.
Thanks Sabrina, I'll have to look up that bra.
0 -
Happy to see so many of us warriors have finished the radiation journey...kudos to you, now it's time to all your body to heal, be kind to yourself💕😘 I have just begun the radiation journey 2/28... Along with the others my arm gets cramped as well throughout treatment. It certainly takes me longer to park then it does to get treatment...whatever! Keeping all of you in my prayers regardless of where you are in your journey
0 -
Here's my most awkward cancer moment so far: I'm at my PS (not surgery PS) who's having a party for bc awareness. Usually I don't go to that stuff but he had a deal of $7 per vial of Botox and I couldn't resist. Well, I won one of the door prizes. I won a free hair styling, cut, color, whatever I want. And then everyone looks over and sees the obvious cancer patient. The doctor felt so bad that he gave me 50 free Botox units, so I could use that now, and save my hair appointment for when I need it. Weird, awkward, but I got a session and a half at least of Botox for free, so I'm down with that. When it happened I laughed and said, "I hope there's not an expiration date." I try to see it as funny, but . . . .
Today I finished up 10 of 30, so I'm already 1/3 of the way through. I can't say how hard I'm trying to be positive, but I hear in the back of my mind....This is when you're going to start seeing the SEs.
Theresa: I'm at MDA. I wonder why I'm not getting that instead of whatever they're doing to me. Well, I guess that's question number one for the RO tomorrow.
Amusing Soprano: I'm not getting that silicone stuff. I want that!!!!!!!! Question No. 2 for the RO.
SerenitySTAT: It's still an ordeal going there, I'm in full anxiety attack mode by the time I get there. But I just read how fear and those types of emotions actually prevent healing, so I've got to stop it. I am doing Bach's Flower Remedy when I don't bring the Xanax. More than 4 hours of sleep a night would help, too.
Ayr1016: Thanks for sharing your tips. I am trying to remember to keep my arm away from my size, especially during exercising. Please keep them coming. Also, yes, you give me hope. The worst part of this is that the thing I'm most afraid of is completely unpredictable until it happens.
LoveMyVizla: CONGRATULATIONS!!!!!!!!!!!!!!!!!!!!!!!! I'm so happy for you. Do you have the weird tan thing that I see a lot? If yes, has it faded? Does your skin feel different?
Seraphima: I feel the same way. I used to be so optimistic, so trusting, and believing everything I was told. Now I feel like a dark cloud, short temper, and suspicious as heck. I need to get an energy clearing bad - more like 100 of them, lol. I'm ready to be myself again.
Past my bedtime again. Grrr..., I should never open the computer up. The lack of sleep is killing me. Hugs to all. Congrats to all the lucky ones who are finishing up. For the ones just starting out, I will admit that any time someone said, "It goes quickly" - I wanted to hurl something at them. But here I am, week 2 over with.
Any of the ladies who have finished that want to share other tips like stretches and your skin care......I'm all ears!!!!!!!!!
0 -
Thank you ladies for the tip. I loosened up my grip a little bit which helped, but today's session also only lasted 8 minutes. I somehow do a really good job of lining up that it doesn't take too much time. I had to wait 40 minutes to see the doctor. If they could coordinate that better it'd be awesome!
The doctor was asking about how I feel, and I said just a bit tired. He said he's tired too. it's the second time he's said it. I get that you have long days, but you're not going through this, so until you do, I think you should just zip it on that part. It's not an easy field to get into to see all the things he does as a doctor, but it was his choice. I find that "funny".
0 -
Frill, congrats on finishing two weeks! Yep, I have "the tan", but it is fading quickly. I had one skin side effect go away before my boosts, and the peeling was done less than a week after rads were finished. I was actually glad to peel the old skin off. My armpit got pretty sore, but I stopped wearing cami's that rubbed it, and wore my sports bra over my tshirt at night. My RO said to keep applying calendula for two weeks post rads, then switch to a thick cream like Cetaphil of Eucerin. Tomorrow is my day to switch. 🙂
0 -
Unbreakable… lol The first meeting I had with my RO he complained of shoulder pain. No idea what look was on my face, but he then added that it was nothing compared to what I was going through. My treatment is on time but every single week I've had to wait 30-40 minutes to see the RO. I actually left one week without seeing him after almost an hour wait. The nurses were trying to get me to wait, but I have stuff to do even though I wasn't working. He barely talks to me suring visits anyway. Spends most of his time typing up info in my file. Looks at my breast for all of 2 seconds, says I look good, and leaves. Very pointless. Makes me appreciate just how wonderful my medical oncologist was.
Sabrina
0 -
Woohoo! I'm done, done, done!!! They made me ring the bell. Really didn't want to, but oh well. No doctors for another 3 weeks. No getting naked for random people for another 3 weeks! And I threw in early voting this morning. It's been a productive day over all.
Have a great weekend, ladies!
Sabrina
0 -
s1d1c1u1 - way to go - congrats!
So glad some of you are finishing and sharing your tips to help get through it.
Stay smiling.
0 -
Woo hoo Sabrina!!
0 -
Exercise tip: Met with kinesiologist today. She gave me a new exercise that I haven't seen before. Kinda like advanced shoulder rolls/arm circles. I'll try to write the steps, but if it's unclear, let me know.
1) Stand with feet hip width apart and keep fingers touching same-side shoulder during entire rep
2) Curl head/upper back down and touch elbows (keep fingers on shoulder)
3) Separate elbows and circle them back and up. At the same time, roll head up and back.
4) Circle elbows up and over to starting position.
Repeat as needed and then reverse direction.
Sleep tips:
1) Melatonin
2) Sleep mask
3) To dim blue light on computers at night, install f.lux. It's free. iPad has the Night Shift setting .
TNpotato - Congrats on finishing! I'm so tired of being tired!
Terri17 - The machine only made a little noise when it was re-positioning. I had 2 different sets of boosts. The first was treating a smaller area with the same type of rays as the regular days. I didn't notice a difference in treatment time. The second was treating a small area with electron rays (I think). For this, the bed I was on was rotated, and a different attachment was used. This attachment came closer to my skin (~6 in) than the regular ray gun (OK, not a ray gun, but I don't know the correct term). At least no breath holding for the second set of boosts. Don't be afraid.
Bbg - There were a few ceiling panels with designs that made it look like I was underneath a flowering tree. But I had to wear glasses for the breath holding. The radiation oncology clinic had lots of artwork. In the main waiting area, they displayed artwork by patients and employees. My favorite was in the hallways leading to the treatment rooms. There was a mix of prints (Matisse and Picasso) and original works by Canadian artists. The children's area of the hospital had much more artwork. The chemo area had no artwork.
Frill - That was an awkward cancer moment. You handled it well and got free stuff. You definitely need more sleep. I don't get enough either, but still more than 4. My brother sent me a FitBit. I use it mainly to track my sleep. It does seem to help me get more sleep.
LoveMyVizsla - It's been 11 days, and my skin is not peeling. ??? Wish my armpit would peel. It's still sensitive.
Sabrina- Congrats! Had appointments today. My MO didn't inspect me. Said my blood work was good and gave me a script for Tamoxifen. Yay? I did have to gown up for my kinesiologist, but she gave me MLD. Yay!
Have a great weekend!
0 -
Sabrina
The RO seems scared to look or touch my boob. They give me a robe to wear so when I showed him my breast I was standing and opened my robe. That was weird, would have seemed different if I was sitting on the table.
The nurse does the update on my file, so I'm able to ask questions. If I didn't ask he wouldn't say much.
Congrats on being done!
0 -
Congrats Sabrina!!!! So happy for you!!
0 -
Serenity, I had a little peeling from bra or cami rubbing the corner of my breast near my armpit. I encouraged it by rubbing my finger over it after my shower when the skin is still damp. If it hurts, don't do it.
0 -
Congrats Sabrina! I'm glad you rang the bell...you deserved it! Time to let your body heal...
Frill- Your PS sounds like a class act...not all docs would care.
Serenity- Thanks for the exercise tip!
Hope everyone is having a restful weekend!
0 -
Thank you all for your responses. Has anyone noticed any size changes in their radiated breast? I was told it may get smaller and firmer. Is it that noticeable? If firmer, do you think the first mammogram after rads will be more difficult? My mammos were painful to begin with. Mind is racing. Starting rads next week!
0 -
Terry, I start mine next week too, and the surgery was on the smaller side, so really hoping it won't shrink more... We'll get through it anyway..
0 -
Both my MO and Surgeon mentioned shrinkage where rads was concerned. I asked my RO about it and she said that if you have pendulous breasts, you might notice some firming up/perking up. Mine are pretty dense, and I haven't noticed any shrinkage, other than from the surgery.
0 -
Terri - My radiated breast is firmer and now sits higher than my other breast, but it's not terribly noticeable and a good push-up bra evens it all out.
Sabrina
0 -
Friday was 12/30. No more of that bolus thing now. Wow, so this week I'll be halfway through!!!!!!!!!!! So far, so good. Maybe I'm getting a little tan? Idk. I noticed it was puffy at the end of the incision, but the RO wasn't too concerned. Well, I'm concerned about truncal LE. I asked her for referrals to PT so I can do some more of that and they can tell me. Since I'm so freaked out the potential of any skin changes, my RO FINALLY asked me, "What are you concerned is going to happen? You have some of the softest skin I've ever seen." Uh yeah, and I'd like to keep it that way. Anyway, though, she recommended Lindi pads. They also come in strips that you can put on right after rads. I got the pad/ice pack (well, refrigerator) thing and figured I'd give it a try. I also ordered some CannaCream, which is supposed to be good as well. But crap, I'm going through calendula gel and lavender spray like crazy. Thank goodness the calendula gel isn't terribly expensive, because the lavender is $30 a bottle. It's going to last 2 weeks. I ordered a bottle, so I'm thinking I should just get 2 more to make it through treatment and the two weeks after.
I may be peeling a little bit, or it's layers of lotion and marker rubbing off, lol. I can't tell. One thing that's odd is I woke up yesterday with a sore throat. I totally blame everything on rads now. Lol.
Today I may just lie in bed all day and see if I can get some naps in. I am so sleep deprived it's ridiculous. I'm doing ridiculous crap like wearing my shirt backwards all day, putting on my panties not backwards, but my legs in the wrong holes, wearing my boxers that I slept in to work. I feel like every morning is a huge rush, so that, plus some days almost running two blocks to the hospital from the train, on TOP of the anxiety....I'm in full panic mode.
I need to work on getting my water in on the weekends. It's easier during the week. Argh, so much crap to worry about, deal with.
Serenity: A stretch Im not already doing!!!!!!!!!!!!!!! The motion is essentially putting your elbows together, head toward elbows, then open back up? I feel like I am constantly stretching, lol. But I guess if I am, then I'm hopefully preventing muscle tightness. My arm/shoulder still feels tight, but my range of motion seems okay. But I rarely get that ohhhhhhhh, good stretch feeling unless the PT is doing my arm. I'm just going to keep stretching.
I have a FitBit, too. That's how I know how little sleep I'm getting. : / Last night was a high of 5 hours. It's not necessarily that I'm in and out of bed in 5 hours, it's that my quality of sleep sucks. But during the week, up at 415am, I'm not getting a lot of rest those days. I'm going to have to tell my boss I can't work or will work much less.
Oh, I also d/l the app - for those who have a mac, google the app name, I couldn't get to it through the app store. It seems great!!!! Thank you!
Sabrina: Congratulations!!!!!!!!!!!!!!!! I hear you on the undressing thing. My gyn asked me to take my pants off for an examination, and I just started undressing right there. She says, "You can pull that curtain if you want." I told her I'd already undressed for people at least twice that day, at least this was a switch up and I was taking bottoms off instead of my top. Oh, and the meeting people thing, that's like the bonus for rads, I think. But I have a heartbreaker, too. She's so young and stage 4 with a little girl. She also has some other tumor. I love her to pieces.
LoveMyVizsla: I hope my camis don't start bothering me. I wear them under everything to protect my clothes from the Sharpies. I'm not wearing a bra right now at all, either. But these aren't shelf camis, and they're sort of loose. I'm trying to do loose fitting everything right now, and then just not wear a shirt once I'm in my bedroom. Lol! I'm glad to know the tan is fading and that you get to switch to a more lotion-ier lotion. My RO really doesn't give me any skin care advice except finally on Friday. Idc if my skin looks great now, I want to hear everything she's ever heard that works. Did she say anything about stretching, if they had you doing that?
Unbreakable: Your RO needs to hush about his tiredness. If he wants to do that, then you can send HIM a bill for your time listening to him. Lol! My sister was saying how she got home "so late" and was "so tired" the other day and she got home at 630. I'm thinking, to myself - I was up at 415, didn't get home till 8pm. Can you keep that crap to yourself, please?
AmusingSoprano: I'm probably in and out in an hour, but that includes dressing/undressing, waiting, etc. My actual zap time is pretty small - 10-20 minutes maybe in the room? And that is a lot of adjusting, marker drawing, checking positioning, etc. I don't hold a bar either. They made a mold of me in the position they want me in and I just fit into that each time.
Michelle: Your tips are spot on and - looking at the sky - Ok, I get the message. I need more rest. My days are too freaking long. I'm drinking protein smoothies, but I need to add back more fresh fruit and salad. Otherwise, I hardly eat. And the calendula gel is the shiz. I'm going through it like water, but Idc. It's definitely cheaper than Miaderm and WAY healthier than Aquaphor.
Seraphima: My RO said to walk 20-30 minutes a day. I'm like right, when do I get that in between rads, work, stretching, lotioning....but I got a new FitBit since my other one died from one of the dogs chewing on it. I can't tell you how much it's helped. Plus one of my work mates sets up challenges and she's a demon. I can't keep up with her yet, but it keeps me moving and more aware of things like, park far away from the front door of the grocery store, or make one more pass around the grocery store for the extra moving around. This is the longest in my memory that I haven't had a regular, get up early, work out routine. But little bits. Just getting up and moving around - oh, lol, stretching - which my PS said to keep up, like, forever, is helpful.
0 -
Frill - Yes, when your elbows are together, you curl down. I feel the stretch in my back at this point. It's like doing giant elbow circles. Make sure your elbows go behind you to stretch your pecs and then elbows go up. Hope it prevents muscle tightness from rads. Where are you tight in your arm/shoulder? I've always had tightness in my trapezius muscles, so this exercise helps. Hope you're able to get PT sessions. I love seeing my kinesiologist. She times my sessions on days I have hospital appointments to save me trips. I still don't have peeling, but there was a time I thought I was peeling, but it was from the lotion and ink.
LoveMyViszla - Thanks for the tip! So far, my armpit skin is not budging, but at least it isn't sensitive anymore.
0
