Summer Rads 2016
Comments
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Elaine! I feel for you so much! I am glad you have had a break and hope they will make it a little longer for you. Mine is getting crusty so to,speak where it has peeled and where it is peeling. I still have about a 2 inch red streak across my side going directly to my incision area. That still hurts a lot. It has not hit the peeling stage yet. I cannot Imagine that pain you felt taking your camisole off . Gentle gentle hugs to you!!! I find I get a lot of sharp pains in my breast. Some days worse than others. Anyone else? Also I have quite a hard lump where my incision is.
Kechla, I would be throwing everything at it too and would have chosen chemo. Although it's not enjoyable I sure found it better than what I am going through now.
Still tired during the day and I nap and then I can't sleep at night. Last night I took my pill so I could sleep because my nap was late and long. Trying not to nap today, it is hard when there is not a lot you can do because of being so sore
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Question
For those of us with raw skin and peeling skin, how are are showering? I try and cover with a wet towel but that takes more skin off
HELP......
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I still shower as usual, coolish water, use Dove for sensitive skin as I was instructed to use and wash thoroughly my whole body including my breast but I keep my back to the water and only let it hit me when about to wash and when rinsing everything off. Has worked fine for me and I do it daily to get all the cream off my skin and keep it clean. I am very gentle and don't use a cloth at all, just soap and gentle hands. I find the dove makes it easy because it is moisturized.
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Valistim~
I am not showering often, but when I do, the water is at a very low pressure and I am not letting it directly hit the irradiated zone.
Everyone~ Today, my nurse told me that the strongest medicine available for this is the prescription Betamethasone Valerate Ointment.
I used it this morning and there is relief. I am taking Ibuprofen and Tylenol as well.
I cannot wear a bra, which means I am not going out in public till I can.
Drink lots of water, ladies.
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Thanks so much ladies. Yes I have the Betamethasone Valerate Ointment. It gives relief but I seem to have to apply it so often.
I just hate how the creams peel up This too shall pass. whew.
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Valstim~
Are you working out of the house at this time? I can't imagine how tough that would be. Sending strength to all the ladies who are.
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gardengypsy I'm semi retired and worked from home before this dx. So at least I have that advantage.
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Valstim~ Good to hear. I think that too much is expected of us when we are going through this. And we expect too much of ourselves. Rest, rest, rest!!!
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Thanks Karen. It was not an easy decision, but it feels like the right one.
Showering..., pretty much just dove soap and no washcloth. I avoid water hitting any area that is raw, but find it soothing on the areas that just itch.
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I am fortunate to have disability insurance through work so I have been off since I started chemo and will go back 2-3 months post rads. I don't know how anyone works through this..huge kudos to those that do!!!
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Karen, when was your sugery,compared to when you started rads?
Kechla, can I ask why your MO is using taxotere instead of taxol
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I shower every day. Our shower has a handheld sprayer in addition to the overhead one. I use the sprayer and set it to gentle. I use Oil of Olay because I was told the antibiotic soap is too trying. I do want to wash everything off at least once a day and start fresh. I am afraid of infection. It does feel tight at first but the Aquaphor helps.
I forgot to add. I was feeling a lot of fatigue early on. A woman in the waiting room told me to eat more protein and drink Propel water for the electrolytes. It has really helped with the fatigue. I just added one more egg at breakfast and that helped.
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You ladies are so great. I appreciate the support. I think part of it is after chemo,surgery I was not mentally ready for radiation side effects.
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Sorry LMV, not sure what you are asking above regarding supporters.
Valstim, me either! I was told after chemo that the worst was over and this would be a walk in the park! I nev expected side effects this bad from rads!
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Kechla sorry you had to make that decision but if it's any consolation, I would have done the same. I think you're doing the right thing, tackling it systemically while you're young and healthy!
Happy Birthday LMF! Valstim and EJ - hope you recover soon. Your experiences sound extremely painful. I have had 12/28, so far can't complain, there is a bit of soreness and twinges of pain, but my skin is holding up. My armpit is definitely swollen though, and slightly pink. I don't think it will hold up for another 16 rounds. -
Today when I met with the nurse, I shared my words of wisdom "what would I do differently" and thought we should share similar stories. Obviously we are all so different but for me I would have:
-given in earlier to the tiredness and just accepted it and slept more. I was fighting it, trying to keep up to my normal pace of work, exercise and free time doing things I enjoy. At the end I have realized I need 10 - 12 hours of sleep at night, not my normal 7. I can now get though the work day if I get to bed while it is still light outside.
-I have iron clad skin and really didn't have any problems except some new moles and a very dark tan. I wouldn't have done the aloe as it dried out my skin and just started with a thin layer of aquaphor. Since switching, my skin has been quite soft albeit dark brown now. But, it has already started to lighten up since I switched to boosters last week.
That's my two little tidbits I leaned during 30 treatments. Tomorrow is my last day and I am ready to move on!!
Hugs to everyone dealing with skin issues. Just like child birth, this too shall be a distant memory (just without a prize at the end)
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Karen, that was supposed to say when was your surgery. How long did you have between surgery and rads
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LMV, not sure why taxotere instead of taxol. I will ask. I think taxol has a higher risk of allergic reaction. What is your experience with choosing one vs the other
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My MO chose for me. I have been looking at the hair board and I know there is a lawsuit about permanent hair loss from taxotere. While I didn't have the typical allergic reaction that they look for with taxol, I did break out in hives and then a taxane rash a month after starting taxol. The hives went away in 5 days, but the after effects of the rash are still slowly fading. Miserable as the hives were, and ugly as the rash is, I'd still rather risk that than permanent hair loss.
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4 more boosts to go- I am peeling a lot, and in a lot of pain, no sleep so dammit I am putting on a bra to sleep in tonight so they can't pull this way and that. I shower every morning, use Dove, and gentle hands. I too fear infection so I would rather get that snotty looking-sorry, but it looks snotty! skin off of me (I don't pull, I just gently encourage!) it off. I do find it tight and difficult because my 9 year old has to be at school by 8 and then the rads isn't until 11 so I go for about 4 hours with no cream or aquahor....
The things I would have done differently- I would have accepted help from those who offered it, I was even offended when my husband decided to take a week off because I was wearing down. It's ok to let people help you. I would have started with water with electrolytes earlier in this process. It helps me. I have tried not to complain too much around the house, because you go to the treatment centers and there are so many people that have it so much worse. So many young people (I am 44, and a lot of those souls and a good 25-30 years younger than me) I also kept up the farce that this is no big deal, I am "lucky" and I cannot complain about it. Well, now I let myself go in my room and cry for a few minutes if I need to. It helps sometimes. I do not, however, question why me? Because honestly, why not me -I know I don't know any of you ladies personally, but let me just say, and excuse my language- you are all bad asses. I know this, because I have decided I am a bad ass myself. Hang in there.
Jen
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I appreciate the what would you do differently thoughts. Keep them coming. It will help those of us on the fall rads board.
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Hi! This is my 1st post. This is my 11/33. I too was surprised to find out I'm getting x-rays each time I go for radiation. I asked the RO why. He said the techs asked him to increase the once a week x-ray to daily. The RO stated that the techs could line me up more accurately. I wasn't thrilled with the extra x-rays, but knowing the radiation was more accurate made me feel better about i
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i tried the cabbage leaf-very soothing. Also someone suggested to me that if I wear a bra, to put a washcloth, guaze or something really soft under the bottom of my breast under the bra to absorb any moisture and reduce friction. it has helped a lot
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hi. I did chemo first. When you get taxol use the elestogel ice slippers and gloves. I used them on my feet and ice packs only on my hands. I developed neuropathy after my last dose but my feet are only a little tingling. My hands are severe. There is a large study being done at one of the major cancer centers if your MO questions it.
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Hi llkkgandm. Good luck with your rads. I would prefer it done accurately as well so daily X-rays would have been fine with me too! No sense going thru it if it's not treating you properly.
LMV I had my surgery December 17th and started chemo the first week of Feb. I did chemo until May 23 and started rads a month later. So it was just over 6 months between surgery and rads. I now do Hercepton until April.
Still raw across one band on my side towards the lumpectomy site. Amazing the warmth that comes off a radiated breast. I am going to see my family doctor this morning so he can see how I am progressing with all this so I may show him.
Things I would do different: After surgery I would have had my doctor ask fo light duties when I went back to work. I was in a pickle because I had booked a vacation to Mexico months before with no cancellation insurance and was to go a month after surgery. Although my doctor wanted me on short term throughout it all, I just could not do it and be going away. So I worked and I do a lot of lifting. I wore myself down and had a breakdown of sorts 2 days before my trip. I went on the trip but was worn out totally. Crying when I need to is another one, I hid it a lot due to my 25 year old. I am the only one he has left and this terrified him. He is better now with it but throughout this whole thing no matter where I go I am the smiling, laughing and acting like I don't have a care in the world. I'm feeling it now, being so rundown from all this and sore. Other than that I did everything I was supposed to. I followed instructions to a T each step of the way. The rad burns could not have been avoided. I used only what I was told on them, but the nurse warned me of this my last visit. Oh ....I know! I would not have eaten so many carbs during chemo. I think I have gained close to 30 lbs and now that it is done, I feel crappy about myself with all this weight and only half an inch of hair! You'd never know tho....keep my smiley face
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I am done!!! Got hugs and a diploma which I put on my fridge! Tomorrow will feel weird going straight to work instead of my radiation pit stop
so I now consider myself cancer free! My goal now is to stay that way. Tamoxifen is my next journey I will be starting next week
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I'm very happy for you , Carlsoda! Check in w us to let us know how you do w tamoxifen. But my ultimate wish for you and all of us is to move on and be free of the everyday worries we've carried through each of our ordeals. Congrats graduate
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what i would have done differently:: I would not have been so 'strong' happy etc to alleviate my kids, friends fears. I would have really let it go when I felt like it.
I totally underestimated surgery and rads, due to chemo. wish i had given them each their level of concern, if that makes sense. I thought that nothing compared to chemo. For me that was not the case. Each bought their own challenges that I was not prepared for at all.
Would have prepared myself mentally for the fact of being triple negative, rads is the end of my treatment. then dr visit first every 3 months, then 6. I will only be scanned if I have an issue.
Just my 2 cents.
Last rad is tomorrow. My neck, and underarm is quite raw, but with the silvadine cream and pain pills, doing pretty good.
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Congrats Carlsoda! I like to hear these stories of what you would do differently. I think my family thinks that everything is getting back to "normal" - my hair is growing back, I'm not the space cadet I was on chemo. But today I will only be half way through rads, and I'm definitely getting tired in the afternoon. I say I am going to go lay down and then my bedroom becomes Grand Central Station! It's such a bummer because I was feeling so good after my second surgery, feeling run down again is just tiresome, literally. I work from home, so at least there is that flexibility.
I had my first Lupron injection this week, will start the Letrozole after the second injection in 4 weeks. I've been slightly fatigued this week, so I have no idea if I have side effects. Can't complain.
Glad to hear you are doing better Valstim!
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Thanks, Kechla!
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