Spring 2015 Radiation Sisters
Comments
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I had my first of 8 boost today. Wow 7 to go. So far not to bad and i hope it stays this way. Now they are just doing one area so i hope the rest of the breast is healing. I to am a redhead and thought it would be a lot worst. I did not need Chemo. As i read through the boards i think that those who have had Chemo are having a harder time maybe because the chemo is not fully out of your system and contributing to the side effects. Also the ladies who have to work and wear bras all the time, all this is irritating. However or the situation we will all get through this. I use pure aloe from the plant in my back yard. I asked my Doctor and he said its the same plants they use to make in the bottle. I clean the nice thick leave very good and peal it. Just use the jell and put in fridge. also use Aquaphor which they have a basket on the table and we can take as many as we need. also, because my breast is a D cup i put Corn Starch once a day in the bottom to keep it dry. Anyway some place might not allow certain things and thats ok. The main thing is for us to heal and find the best method to do so.
I also have more then 2 techs at all times. -- I see some of us are finishing up at the same time but most will stick around to help the newbie with their question. Hope everyone is recovering well. Glad Jean in back from the GI problem. My prayers and big hugs to all of you.
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Thanks for suggestions on the GI issues. I saw the RO today. He feels my GI problems are Herceptin related--a cumulative effect. He suggested eating yogurt with active cultures twice per day for 5 days then adding in a good probiotic supplement. I am giving it a try.
9 treatments done--19 to go. My skin and MX scar still look fine, but I know it is still early. I am so envious of you ladies who are soon to finish. You are an inspiration! After this, I hope you all can take a break and let your bodies and souls heal. We all deserve that..
Have a great evening.
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Redhead -- hope your session was quicker today! I can't believe it took the radiation therapists so long to position you yesterday.
MombieZombie -- ugh about your skin peeling. Hope it feels better soon!
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Yes to yogurt and probiotics. Definitely has helped calm things down! I think the info I read against aloe from the garden had more to do with sterility if you were applying to open or peeling areas, which makes more sense. I know my garden aloe is what I use for kitchen burns due to neuropathy in fingers and chemo brain when cooking! Nap sounds good 😴😴 Linda
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Jesika--Yay! You're in the home stretch! I start boosts (5 of them) on Friday. Glad to hear you are doing OK so far. My friend's skin is down right scary, and it only took one boost for her to get that way. You give me hope!
Daisy--I'm on Herceptin too. Maybe my taking probiotics from the start saved me from what you are going through then? There are so many choices to make and obstacles to get through in all of this. I'm glad to know that I made a good choice that may still be helping me. I hope the probiotics help you. Please share how that goes. I'm glad your rads are going well so far.
Redhead--Was thinking of you today too. Did things go easier today?
I think I may have already said this--sorry if I repeat myself. Rads are kicking my butt today. I am soooooooooooo tired. Tried to take a nap. My insomnia is getting in the way. Has anyone here ever taken melatonin during the day before? Regular sleep meds don't work on me. Melatonin works, but it costs me a head ache. Not sure if I should try it in the day or not.
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Well I finished today's treatment. Down to 23 bit who's counting. Teehee! I mentioned about being uncomfortable with just one tech and they switched my appointments to later in the day after lunchtime when they are very busy. They had 2 techs today and they assured me there would always be 2 techs for the rest of my treatments. Love, Jean
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Jean--Glad to hear it. It pays to speak up. I finally got my team to understand the gravity of how badly I'm effected by all of this emotionally. I was forced to tell them more about my past traumas, but they finally get it. My RO says that I have all the symptoms of PTSD. My boost set up is going to be handled very differently than the things that were bungled in my first planning sessions.
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Mommie, I too have had ptsd from multiple traumas in my life. I think the vulnerability I've experienced with this cancer stuff has triggered a lot. Facing my own mortality and the fragile nature of life itself has been changing me and I'm not done yet! Whew what a journey.... Love, Jean
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Mombie. I'm glad to hear your team is accepting your needs. Gentle hugs to all!
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I have 2-3 techs present at every session. Today I had three and one was a dude. lol akward.
6 of 20 sessions completed. Redness, swelling and tenderness in full effect. This cannot end fast enough. lol.
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shelley--Awkward indeed. I think I would have been frozen with fear if a guy showed up in my team. I requested no men, so I'm safe.
I did have a female student show up among my techs one day. She didn't know about not touching me or undressing me. I had to resist throwing up and it was a strain to explain that I can't tolerate that. Triggers more trauma.
Jean--Thanks for sharing that. I am doing my best to not let this scar me further. Trying to reach for what all of this can teach me instead. It helps, unless I'm in that rads room. I just have to brace myself until it's over when I'm in an actual treatment. So glad it's almost over. I do believe firmly that the challenges we go through in this life have the benefit of making us better, kinder people if we choose to allow ourselves to look at it right. Like a sword being forged in the fire. Hugs back. I appreciate your gentle heart.
Hugs all around. So grateful to each of you for sharing and caring.
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Mombie glad to hear they are listening to your request. Hope the rest of your rads go better for you.
I had my final simulation yesterday, but due to mis-communication I will start on April 13 instead of today. I was annoyed but will just have to wait it out.
One of techs is male, he did no bother me so much as laying there bare from the waist up for 20 min while they adjusted my position and took x-rays. Uncomfortable
Cherice
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Thanks Cherice. Sorry you are stuck waiting for your start date. Bummer for sure. Once you know you have to run the gauntlet like this, you just want to start running and hurry to come out the other side! I understand the naked on a table thing. That is nearly paralyzing for me. I have to still be bare until I'm in position, but then I get to be covered. I can hardly breathe from the panic until the cover is placed. I especially hate when they tell me to take a big breath and they watch and then put marks on me while I hold my breath. I feel like a germ under a microscope....among other things. I'm sorry you felt uncomfortable.
While I was sharing pains and panics with my sister today, she reminded me "think Hawaii, think Hawaii, think Hawaii!" DH and I are going there in a month. So glad I have something extra to look forward to. I hope all of you have something you can reward yourselves with when this is all done, even if it's just lunch with a friend. It helps to keep a happy thought tucked in your pocket.
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Day 2.... Quicker than the first, but was still there an hour....most ladies are saying its 30 minutes tops from parking their car, to getting back into it. I'm wondering if laying on your back is easier for the techs.
Loved reading the refrigerating of aloe gel tip....learn something new every day here, soooo thankful we all have this place to share. I think I will be putting cornstarch in my arsenal too🙌
Praying for peace of spirit for us all. Sweet dreams
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The count down is on...I start on Monday. I just got a big tub of Glaxo cream (it's the only thing I'm suppose to use??) but the aloe in the fridge sounds refreshing.
I'm not planning on working during rads. 19 yrs with the same company with less than a handful of sick days takes all guilt away ...to be honest I'm not really looking forward to going back to high stress corporate. I'm not sure I can put my head in the game like I did before. Just another thing that BC has done (this time maybe for the better.)
I'm trying to make a few meals and have them in the freezer..oh the planning we do as women!!!
I'm scheduling all my appts for late afternoon so DH can come with me. We are an hour away from the hospital ....ugh!! We are planning a much needed trip once all of this is done. Costa Rica is calling us!!! I've been told I will need a sun guard shirt as after rads you are more at risk for sunburn.
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JJ--Ready-set-go. Good to hear you all pumped up a ready. Yay for Costa Rica! I've never been there. I bought a sun guard swim top for our trip. There's lots out there. I want to get one more. Anyone know good brands or good places to get them?
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Add me to the list of those with ongoing GI issues. The lingering effects of the chemo, like neuropathy, I'm sure is contributing to it, and clearly the radiation doesn't help. Also I've been taking antivirals prophylactically since I had shingles just as I finished the chemo, and those drugs cause the same issues. I've just become accustomed to always having an anti-diarrheal medication on hand. Now, I feel like one of those commercials for V8 juice where they slap someone upside the head. All during chemo I consistently ate Greek yogurt, partly for the probiotics but also because I like it. For some reason I've not bought it for a few weeks now. I've got to get some. So thanks for the slap to the head.
The gel in the fridge sounds delightful. I'm in my 4th week, and so far only a small red area, nothing severe and no pain, but I'm not counting on it staying that way. My RO recommends Miaderm, and I've been using it faithfully, and now I will look for some aloe gel to have on hand in my fridge.
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I went back to regular treatments today, which means I have four of those left, and two more boosts. After 5 boosts the skin around my scar is a little pink and itchy, but not really bothering me too much. My arm pit is peeling but it doesn't hurt at all. I'll get through these last 6 treatments and then be on the road to healing for good. No more chemo, no more surgery and no more rads after next Wednesday. Getting closer...
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Hey everyonr. I was so happy to have my concerns about 2 techs addressed. For me at age 71 there isn't much of a modesty issue but more having 2 sets of eyes to make sure I'm set up correctly. Today hubby was with me when my (male) rads doc examined my breast. That was a bit awkward but mostly because I kept looking at hubby to make sure he was ok. Actually now that I think about it it does have a comic element. Love, Jean
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I don't know what was up with me yesterday, but the closer I got to the oncology office for my radiation, the sicker I felt. When I got there I told the nurse that I wasn't sure I could keep my appointment (#21 of 36). She asked me if it was my medication (hormone suppressors) and I told her I didn't think so since I hadn't had that feeling so far. Then she brought me out some Ginger Ale and asked me to try some to see if it would help. I asked two of the people waiting for their radiation to go ahead of me. Luckily, the Ginger Ale helped.
When I got in there for the rads and took off my top (I haven't worn a bra since the mastectomy) one of the techs said, "Whoa, your armpit is really raw" and I told her the pain had kept me up most of the previous night. They called in the RO who told them to keep the bolus off my armpit and to send me into his office after my treatment.
He gave me a prescription for 1% Silver Sulphadiazine Creme which works like a charm, but is really messy. It's topical and not meant to be rubbed in. It's commonly used for extreme burns and is pretty pricy, but totally worth it.
Today when I went in everyone seemed very concerned about how I felt. I really do love the group that is is the radiology dept.
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Cassiecat--Hurray only six! I have seven. We are going to hit the finish line nearly together. Good luck. We can do it!
Jean--You are just adorable. I love how you just keep smiling.
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Cherice--sorry to hear that you didn't get to start regular rads. today. I know that must be frustrating. Guess I'll be starting before you after all if things go as planned. Bought my "softie" bras last weekend.
Right now I am dealing with a swollen, stiff knee. (And the other knee is stiff too!) No idea what's up. I'm not aware of injuring it. Last time I saw her I complained to my onc. about muscle pain and she said it is due to the steroids taken to combat nausea during chemo.. She said I had to walk/exercise for it to go away. so...I have been walking, but now this. Very frustrating. I feel like I will never get back in shape. I guess just best to take things one day at a time....great to read all your encouraging words and advice ladies! Best to all of you. Hester
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Hester--It's a bummer to add knee pain to all of this. You said you didn't remember injuring your knee. Are you maybe sleeping in a different way to avoid laying on your raw side? I get knee pain if I sleep funny.
Evilmidget--So sorry you were feeling bad at that treatment. I'm glad they are trying to take such good care of you at your treatment place. Was today better I hope? I heard the Silverdene is great. I also heard it ruins fabric. Any trouble there? My friend puts non-stick pads over the area of the cream to help prevent it getting on her shirt. She also said it was hard to wash off. What are you doing for that?
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what is a boost? -
Kathy--Often near the last of your rads, the last 5 to 8, the dosing is raised and they consentrate the beam to where the tumor was. It's called a boost.
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Hi, Kathy - I thought I'd respond to your question since I just found out the answer last week!
A boost is just a more targeted dose of radiation. My RO said that the boost (although she doesn't like to call it that) will be at the surgery bed, rather than the whole breast and underarm. I have one regular rad treatment to go and then five BOOSTS!! Yay!
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I guess I should add that it involves another planning session, though I think not as long. I am told that the doctor will come and draw on me, where the boost needs to happen. They designs special blockers to protect the rest of the area. Those are loaded into the machine and are unique to you. I am also told the machine comes a LOT closer to your body for these. My boosts start on Friday.
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I have also read (written by an RO) that the boost dosage is about half of your total dosage - so it is a LARGE amount of radiation. This may vary from one to the next but it was confirmed by my NP.
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Mombie -
I haven't heard anything about another planning session and mine starts on Friday, too. I hope that doesn't cut into my Friday afternoon nap time! Please share hear what you learn from your session!
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Readytorock--I will surely share. I don't know if it's a separate appointment. It kind of seemed like they just lump the planning into the end of a regular treatment. It may also be different at different places. They weren't going to tell me anything about this until I started asking questions. I will never recommend my treatment place to anyone. My boosts start Friday and no one has told me I need any extra appointments. You might want to ask more questions at your treatment place.
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