Anyone getting ready to start Radiation in Fall 2016?
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Serenity, I am sorry to hear that. Some muscle stiffness will come from radiation too and not only from position. The pectoral, the fascias, and the shoulder muscles could be affected too. Depends on the position of the equipment. I see this variation of side effects due to many factors: equipment used, angles used, molds used, area covered, etc. etc. There is equipment that adjust to changes in respiration and others do not.
Thanks God the new center I am moving to does not tattoo us. I hate and suffer panic attacks when I see needles. I received so many penicillin and other antibiotics shots when a child, that I see a needle no matter how small it is and my veins collapse. Besides, I bought a sharpie with extra fine point to be used by the tech. That is, if the RO and I can negotiate a good course of action that I accept.
Bye, I need to sleep three to four hours. See you tomorrow,
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Maria - The radiation didn't cause my stiffness. I had some cording due to my surgery (much better now even after rads. Lying on a hard surface for an hour resulted in some stiffness in my back. Stretching helped both. I never had problems with my shoulders. When my RO checked my shoulder ROM, she asked if I did yoga because many patients couldn't go as far as I did. I have a friend who was brought to tears from her shoulder pain during treatment, so I figured recommending stretching helps with multiple issues. My techs recommend exercising to prevent problems.
I hate needles because people always have problems finding my veins. The tattoos are very quick. I'd rather have it easy to determine where I had been treated just in case.
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Half way there! By Friday I will have 8 sessions left which means next week and three days the following!!! I am really lucky to have great techs and med assistants, they make the time fly by and my breast looks great. Even the RO was surprised how good it looked. I am using calendula salve from the health food store as that is what the RO recommended.
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2 more whole breast and 5 boosts left! Just had a small patch under my breast peel this morning. Guess it was silly of me to think I'd escape 33 treatments without some skin issues.
The weight loss has ceased. In fact, I've actually gained 2 lbs in the last week or so. So much for losing the chemo/steroid weight.
Sabrina
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I did ask (the PA for my RO) and she told me it was fine. The green tea is sprayed on externally - I know super weird but I have a friend who several years ago was part of a "study" that her oncologist practice in Indiana participated in. When she would go in for PT her therapist would comment that she could tell which patients came from that particular practice becaus those patients were only mildly pink with no other skin SEs. So I am hoping this regimen will help since my skin seems to overreact to anything medical. But I will double check with my RO - the last thing I want is for there to be interference with my Rads and have them not be as effective 😩 Thanks for your input
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I am 48 and agree that the hormone therapy scares me the most. But not doing it scared me even more. So praying for manageable SEs 🙏🏼.
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Cwill - Did you make up your own green tea spray? I was thinking of adding white tea to my salt spray. I have a bunch of white tea bags that I don't like.
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First day of boosts! I went from 14 zaps (25 days worth) to 12 zaps for days 26-28 to only ONE zap today. Woohoo! She had told me yesterday that it would probably be 5 zaps for boosts. Totally strange to go to 1 from so many for so long in one day. I have tomorrow and then Mon/Tues/Wed of next week.
I think I started slacking on my water intake because I have been a little lightheaded and slightly dizzy at times lately. I am trying my best to increase now that I am aware. I lost weight in the beginning, but have gained it back.
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Cwill I have heard good reports about spraying the tea on your skin! Let me know how it goes! Also, have you started hormone therapy yet? I meet with my new RO the beginning of November.
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So today they took a looong time to get me positioned and had to take another Xray. My tx is long anyway but super long tonight. Then my first meeting w/RO wasn't w/my RO but someone I don't know, who told me I had to do another sim because they had a hard time although what they've been doing is "acceptable." I allowed as I'd prefer perfect to acceptable (WTF?) and will do the sim tomorrow. Whatever I said. Not like I'll live long enough to die of radio-induced cancer. Doc smiles and nods sadly. Grouchy tonight.
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SerenitySTAT - Yes I just boil 1/2 cup of water at night and add two bags of organic green tea. I let it sit overnight and in the morning pour it into a mister spray bottle. Also I do not know if white tea would work as well. I am not that versed in what it is in the green tea that helps.
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ClarkBlue I've only been spritzing for 4 days now. I try to do it 3-4 times a day and that is the real pain. Strip down to the waist, spritz and wait for it to dry, slather on Eucerin and then re-dress and then repeat in 4-5 hours. But figure it is a minor thing and if it even helps just a little super worth it. Also I don't know when I'll start hormone therapy. I am assuming after radiation which I finish on November 21st. I am thinking about preemptively finding a therapist. I've had bouts with anxiety my entire life, mostly manageable until after my 4th baby when combined with PPD I nearly had a nervous breakdown. I have been on a low dose of anti-anxiety meds for 16 years and all has been fine but the thought of more anxiety, depression, mood swings and other SE's from Tamoxifen has me frightened. Not sure I'm ready for the wild ride. When do you start your hormone tx and when did you finish radiation?
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Cwill, I don't start rads til Nov. 2, but have been on Arimidex since Oct. 8... it's been ok so far, but found my BDS showed weak bones and worried Arimidex will only make it worse... I'm taking Vit. D and Calcium, so will be glad to see MO in a couple of weeks
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reflect - I'd be grouchy, too. Hope your sim went well today.
Cwill - White tea is made from the same plant as green tea, but the leaves are harvested at a younger age and undergo less processing. For the most part, white tea has more antioxidants. Green tea has a few other nutrients probably developed through partial fermentation (black tea is fully fermented), but I like the taste of white tea better than green. I just have a brand of white tea that I don't like, so I'll add it to my salt spray. Thanks for the idea!
IHGJAnn - I've been eating dried plums (sounds better than prunes) to protect my bones. If you're not used to it, start with a few. I was eating up to 5 a day during rads, but I'm eating about 7 a day now. Ask your docs.
4 days after rads - I woke up this morning with my skin feeling sensitive. No peeling, but still reddish. Took a long, salty bath and felt better. Have a great and restful weekend everyone!
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Mariangel, just a little note of explanation... I'm one with an onco score that seems quite low to need to go through chemo. However, many centers are now adding the genomic tests when the scores are in question. While my numbers might appear low, my genomic test, Prosigna, came back that I was at very high risk for recurrence. No one should have to go through chemo needlessly, but we all need as much information as possible to make that decision.
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Went yesterday for my CT and tattoos, Wednesday I have my simulation and I will be receiving my first treatment. If all goes well I should be finished with treastment by December 6th...Im keeping m fingers crossed there are no delays because we are going away over NYE. My hubby planned this trip awhile back as a relaxation from the tough year we've had.
Cwill- Spraying with green tea...I like it, definitely going to give it a whirl...anything to help get through all of this. Hope everyone is doing well and has a great weekend!
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Thanks Serenity.. I'll try that, I remember you mentioned it before, but forgot about trying it. Dried Plums are good anyway.. We used to make Prune Whip with egg whites and prunes.. really good
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I'll be working through rads and provide training to our admin staff a few days each week. What do you recommend wearing? A loose sports bra? I don't want my nipples showing, its not very professional.
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Unbreakable, I bought some inexpensive camis from Amazon. I wear the surgery bras over them to protect my somewhat irritated skin, and to protect my good clothes from the aquaphor. Not sure how this will work as my skin gets more sensitive, and I start back at work in an old school building where the heat is either ON (steam bath) or OFF (freezing, all the students in their winter coats). It's on now. We'll see.
Serenity, Thanks. They didn't actually do a full on sim but took more films and felt it was good and did the treatment. I like the afternoon techs better!
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reflect - I got several X-rays before each treatment, too. As my skin got more sensitive I preferred wearing fitted cap-sleeved tees instead of camis/tanks. I got mine from my daughters who wear a smaller size than I do. They prevent skin-on-skin contact in your armpit.
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B"H
hi.... has anyone experienced nausea from the RADS? yesterday i had #10 (yea!!!) - a few hours later i was so fatigued and then nauseous and vomited during the night - wondering if i just picked up a bug, ot this was a SE of the RADS....
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NoDespair, some of the other ladies said they felt sick when they didn't drink enough fluids.
I'm a week out and my skin is doing great. The rads side looks like I've been to Hawaii and got a nice tan. I wish.
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Hi Serenity, Cap sleeves is a great suggestion, thanks. I just got my new, fancy washer and it has warnings about washing oily things (they mention skin care products). Whaaaaat? So I'm hand washing the grease stained camis first then I'll try the machine. I never heard of this.
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Hey, it's nice to hear from other Green Tea sprayers. I also heard that Lavender spray with Green Tea is great. I'm doing green tea, lavender, Calendula gel, and then aloe. The lavender spray has to be a specific kind, it's something in the preparation. The article I read described making your own, but also gave a link to buy it, so I went that route. The article I read (if anyone wants to check it out) is at Quinary5. Wow, I can't say what a relief that I'm not the only green tea user.
So far 7 treatments and I was in the ER after the 6th. I have cellulitis in my LE arm and my foot. I don't know if it's radiation related or not. The response from the treating dr was, "I'm not an oncologist." *sigh*
My arm, shoulder, etc. started tightening after 2 treatments, which concerns the PTs because it's - well, too soon for those SEs, in their opinion, and they know I'm religiously stretching because I'm just nuts about stuff like that. My skin, though, looks ok, although I need to wash off some of this marker detritus before I can really tell anything.
I'm wearing the Jockeys Supersoft camisoles under my clothes. I'm sucking it up and not wearing a bra just to eliminate as much contact as I can. I didn't think about tees, especially seamless ones, would be even better. Also, I have the Anaono camis, which I'm paranoid to wear because they're so freaking expensive. I compared the fabric content to the Jockeys and it's incredibly similar. But I have been able to get marker stain out of the Jockeys camis by using a ton of the Oxyclean stain remover and washing in hot water.
Oh, one other thing, I got a shower head that filters out chlorine and everything else on God's green earth that's supposed to be bad for your skin. It also has about a zillion different water spray options and one feels like I'm in a rainforest. I like that one a lot.
Hopefully all of these precautions will help keep some of the yuckies away.
Cwill: I like your green tea recipe, more bounce to the ounce, lol. I'm adding another bag of green tea to the upcoming week's mixture. I agree it's kind of a pain. I feel like I spend forever in one of the changing rooms and everyone's thinking, "What is she doing in there?" But I spray a layer, do some stretches, spray the next layer, stretch while it dries, gel, stretch, aloe, stretch. Lol!!!!!! If it works, that will all be worth it.
Mariangel43: I don't have any metal in my wraps unless I purposely have a pin or something for decoration. I wrap over a cotton shaper directly on my head, takes about 5 minutes unless I'm doing something super fancy - which I won't during rads since I just have to take it off and redo it. But they're letting me wear a little hat during, so I'm ok with this compromise.
thereisnode: I was getting super nauseous yesterday afterwards, but I don't know if it's rads, or that I'm on antibiotics. It could be both. I try to look at nausea as gratefully as I can. Weight loss. I just have to be able to get in my protein smoothie *before* rads if it kicks in too much and make SURE to get in those 100 ounces of water no matter how much I don't want to. Has yours eased up any? I agree with the hydration thing as a contributor. My PTs said a gallon a day. I know water is not the most fun thing to drink when you're nauseous. If you can do some perrier with lime maybe? I hope you're feeling better. *hugs*
Serenity: Are you feeling any relief from the muscle tightness? Do you have a stretching program? I just added a second one that my PTs had given me. I think it gives me a deeper stretch. I'm still getting tighter, but I have to wonder what it would be like if I weren't stretching 3 times a day. Shoot, maybe I need to add in some more sessions, lol.
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reflect - What kind of washer is it? I've had front loaders for over 15 years, and the only items I didn't wash were rags with gasoline (lawn mower), paint (spills), or mineral oil (treating wood furniture). I use vinegar instead of fabric softener.
Frill - Cellulitis? Hope it's getting better. Before treatment, I did shoulder rolls (forward and back), arm circles (both directions, palms up/down/back), elbow curls (keeping fingers at ears, touch elbows then elbows back), and last one name unknown (hold out arms to side with 1 palm up/other palm down so that shoulder rotates forward, switch direction of palms at the same time and exaggerate shoulder rotation). Repeat each 10-30 times. I think the last 2 helpto loosen everything up. After these, I stretch my neck, arms, and upper body in every direction I can think of. Typical yoga stretches. For the affected arm, I lean up against the wall and walk my fingers up til I feel the stretch in my torso. I may need to rotate away from the wall to feel the stretch. This really helps with cording. I took a long time getting dressed too. I would stretch while waiting for the lotion to dry. I do feel that the above helps, but they do need to be repeated at least 2 times a day. When I'm sitting, I try to move my affected arm. Sometimes it's just reaching straight out or massaging my scalp. Making a big circle works better. By the way, do you supplement magnesium? It might help. I use a magnesium chloride spray before applying lotion.
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Terri17 - late in responding to you but wanted to reply to your question around skin and 4 week treatment. I had 4 weeks (16 days of regular radiation and 5 boosts), and was fine for the first 2 weeks. From about 2.5 to 4 weeks I got very itchy/peeled a bit, and had the sensitive nipple folks talk of but once I stopped it all cleared up pretty quickly. I finished just over 3 weeks ago and pretty much all cleared up - in fact I think the skin that got radiated looks better than the unradiated skin - guess I got new fresher skin once the old stuff was removed. I've got red hair and fair skin so I'm thrilled that it wasn't as bad as I expected.
What I did notice is that I didn't sleep very well while I was getting radiation. I've always been a pretty good sleeper, but was restless while I was getting the radiation. Started sleeping much better as soon as I stopped - of course it might have been anxiety related but I don't think it was.
Best of luck!
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Frill, I haven't started rads yet, but I've been trying to find something I could drink without getting nauseated.. I found if I mix Sparkling Water with regular water, I use the Pure Filter, I can drink it just fine.. and it doesn't' have to be cold either.. I start on Nov. 2 so trying to get everything ready.
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Just logged back in and realized I've been offline longer than I realized. (Got a new phone and have to have my old device to log in, and just - tired).
From back then I owe I big thanks to Maricells and bbbb for their kind and encouraging posts.
I want to sound positive, but the best I can say is that it's almost over. I'm done with my 25, and start boosts Monday afaik. I really did fairly well through about #20, considering I started with a pretty bad "burn" or whatever it was I got from my sim appt.
But skin breaking down now, been driving me crazy last few days. All those spots should be done with rads though, my RO said they should begin healing in about a week. He also said he's never heard of fatigue from rads though, and didn't want to admit that I was turning very red all along and that it could be the rads (though he also didn't want to say it was the sim - what else could it be though?)
I'm mostly worried if the techs want to put more tape on though where the skin is broken down. I really don't think I can handle sharpies and tape there. And no one has said anything about another CT scan before boosts, so I hope that's not going to happen. For whatever reason I was SO sick for days the first time.
I'm just telling myself one more week. If the tumor site keeps holding up, that's where the boosts are supposed to go, so it should be all downhill from here, and healing soon? I'm hoping I can go back to work soon. Right now I don't dare make myself responsible for and in front of a room full of students when I never know when these stabbing pains will set in. It's hard to be quiet and still and not let on I'm in pain. That wouldn't go over well in a classroom.
But not much longer. It's gone by seemingly very fast. With the commute, and everything that goes with it, from the time I have to go get ready, I lose about 4-5 hours most days, so that makes the time go by quickly. It's given me a chance to catch up on podcasts I like to listen to.
Anyway,so checking in. I live in very sift men's t-shirts, use cornstarch under my arm, just started silver sulfa dine for the broken areas hoping to prevent infection, and use aloe gel sometimes. My lotion burns now. Weight has stabilized (I lost some too). Just want to get past this part. I have a lot of trying to catch up on reading in here. I hope you are all doing well, and the green tea spray sounds awesome - I might try that!
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hello all
I've been a lurker here for a while, I'm due to have rads sometime but don't have any appointments planned yet. I'm a bit puzzled that there doesn't seem to be any hurry for rads to start since I'm now four weeks past re excision. I don't know whether it's because I now have huge clear margins or because we have a different treatment protocol in the UK. Most things in connection to cancer have mandatory time frames here unless there is a clinical need which overrides it, like a delay for wound healing. But anything that doesn't have to meet the guidelines often takes longer, since our system is (under) funded by general taxation. I see an oncologist in November and then will get an appointment with the radiologist sometime after that.
So has anyone else had a long gap between surgery and the start of rads? The estimate I was given was possibly the beginning of December, which is not going to be great in terms of the Christmas holiday season.
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As the old saying goes, "there is no rest for the wicked." Since starting rads I have developed some insomnia, causing me to sleep around 3am and wake around noon. Ugh...
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