Fall 2013 Rads

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  • DeliriumPie
    DeliriumPie Member Posts: 1,370
    edited November 2013


    I'm so sorry bluebird. That is pretty much how I look now. When I took off my dress for treatment today there was peeled off skin stuck all over the inside. The pain is constant, I know, your almost there. It makes my stomach drop every time I look at my chest. I know the pain is there and that it is bad, but when I see it, it just makes me feel sick that it is even possible. I completed my regular treatments today and tossed that wretched bolus into the biohazard bin. 5 boosts starts tomorrow. If the machine doesn't break down, I will be done on Tuesday. If it had not broken down so much already, I would have been done on Friday, the day before my 33rd birthday for my 33rd treatment. They opened the office last weekend so I gained some ground on missed zaps, because everyone was getting so far behind. but they won't do it again.


    Saw the ro today and he said my skin didn't look that bad. Really?! Bluebird, he did tell me I need to wash it with Domeboro to prevent infection and according to him, help it heal faster. He says in three weeks it will be like nothing ever happened. Of course this is the same man who told me the worse I would experience would be like a suntan, when I was expressing concern beforehand about my very delicate skin. Ha! Sweet dreams ladies!

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  • FierceBluebird
    FierceBluebird Member Posts: 758
    edited November 2013

    Deleriumpie, we must have the same RO. I was told the same thing, "your skin looks pretty good". I find it hard to believe they've seen worse. My skin (or what used to be skin) is sticking to clothing and even telfla bandages. It's freely bleeding and open in places. I'm worried about putting anything on it anymore. I saw Domeboro  soaks in the pharmacy, but they are astringent, and thought they would dry instead of moisturize. But I will ask about them. I've heard they are soothing.  I also don't like that they are aluminum, but trying to use natural products didn't get me very far! Now it's all about "better living through chemistry" baby!  

    My husband got sick when I pulled off my tank top and just the movement opened up wounds. I saw his face and looked down to see blood dripping down. I can't understand how they can continue this!

    Bummer about the birthday weekend, but plan another weekend to celebrate when you're all healed and feeling better and can really celebrate!


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  • wyo
    wyo Member Posts: 541
    edited November 2013


    Bluebird


    I have been giving this some thought- I think this "non-skin" is going to stick to just about anything it comes in contact with even things like telfa which are called "non-adherent" It looks like you are having large amounts of moist desquamation and possibly necrosis when looking at the picture you sent. I have a friend who is a wound specialist - I am going to ask her advice but in the meantime I would ask if they have advised saline compresses to the open areas so its a wet dressing not something dry? I will email her now

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  • ItIsWhatItIs2013
    ItIsWhatItIs2013 Member Posts: 541
    edited November 2013

    Delerium & bluebird..,,,

    Again... im so sorry for how rough its been...i showed athe pic, bluebird ti my hubby, cuz I havent revealed myself since he unwrapoed me from surgery.... told him I was lucky & he freaked out that it could have been that bad..,,

    When I told him I was crying because if your pain..... I think he finally understood that no one can know our fears & realities unkess we are going thru it...

    Fast healing for all...

    Lorrie

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  • FierceBluebird
    FierceBluebird Member Posts: 758
    edited November 2013

    I don't want anyone else to feel sad. I have enough sadness for everyone! I am starting to worry about the effect this is having on my husband. He almost broke down last night and he never cries. It's just such a mess at this point. Wyo, I'd love to hear what your friend has to say.

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  • denilynne
    denilynne Member Posts: 102
    edited November 2013

    Dear Bluebird, I know that I speak for all of us. Our heart breaks for you and the road of misery that you have had to hoe. Anyone who has heard your story and seen what treatment has done to you would have a heart made of ice if they didn't feel sad. We especially, know some of the misery you have been through. It's got to break your husband's heart to see the pain and sadness you are going through. I am sure that, if he could, he would take all of your pain to himself just to spare you from it. I am praying for you even at this moment. I so want you to heal soon. ♥

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  • DeliriumPie
    DeliriumPie Member Posts: 1,370
    edited November 2013


    bluebird, I tried the Domeboro last night. It actually was soothing. I mixed it per the directions and soaked a hand towel in it, then laid the towel over me for about 20 minutes. I was afraid it would be very painful but it wasn't and I actually wanted to press the cloth harder into the worst spots because it was making it feel better. There was quite a bit of skin on the towel when I removed it but it was the first relief I have has in days. I let the fan blow on it for a minute afterwards to dry. Then followed with silvadine. Even though it is still crisp and very discolored, purple brown and red, something about it looks healthier this morning. It may be worth a try for you. It also seems to have reduced the swelling some.


    I am surprised that so many ladies here were shocked by your picture. I thought that this must be more common. My bf has the same grim looks as your hubby when he sees me. But remember that men are usually bigger wusses when it comes to things like that. I think it is just shocking for them to see what we are actually going through and the helpless feeling that they can't fix it. Hang in there.

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  • TanyaF
    TanyaF Member Posts: 54
    edited November 2013


    I will be joining you ladies on this radiation road. I have my re-consultation and planning appointment tomorrow. I have read through this thread and have some of the products you all have been using. I am curious what my doctors will recommend. I have gone through 5 rounds of chemo and am anxious about what happens next.


    Delirium and bluebird-wow! I can't imagine what you both are going through. I'll admit that the picture scared me! I have fair skin and burn easily and I don't know if that makes a difference. I hope you get through this soon!

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  • MsPharoah
    MsPharoah Member Posts: 1,034
    edited November 2013


    Hello Radiant Ladies! Good morning and Good Healing.


    I think that many of us were 'shocked" by Bluebird's photo because it is really unusual to have such a bad reaction to radiation. Losing one's skin, oozing and bleeding is definitely not the norm. But it is real and it happens and sadly has happened to several of our beloved sisters. It is the same with chemo and surgery. Some people have a very difficult time and have complications, others sail through. I cried when I saw the photo. I wasn't shocked.


    TanyaF, welcome sweetie. Just so you know, I had all the indications of being fried to a crisp (fair skin, large breasts, thin skin) and I made it through radiation with no big problems. It was red and sore, itched a lot but I made it through. I had my appt early morning and worked throughout. I really didn't have a lot of fatigue either. I am about a month out and you can hardly tell I had radiation. If I knew what the "secret sauce" was, I would share it with others, but I just don't know. I used Aquaphor and Aloe Vera at night and wore a soft bra for comfort. What I do know is that most people having radiation get through it just fine.


    I think we are here to love, comfort and encourage our friends during this difficult time. I know that I have received much encouragement from the radiant ladies on this thread...we definitely have each other's backs.


    A special hug to Bluebird and Delirium Pie today!


    Love to all the radiant and soon-to-be radiant graduates, MsP

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  • Bounce
    Bounce Member Posts: 574
    edited November 2013


    Hi Ladies


    With all the physical pain and suffering you are going through it is amazing that you are still concerned for your husbands and boyfriends and partners in general. It shows how special you are that at this time of your life you are still thinking of someone else's well being.


    I know my husband has a tough time dealing with my pain and discomfort. I think it helps him when I am honest with him and say "this sucks but it will get better" or "it will pass" or "I'll be OK again in an hour I just need to rest now".


    I have also taken to asking for a hug now and then - something I never did before!


    Its also a help to him when I ask for help with specific things like saying - Please help me by emptying the dishwasher. Or please help me by taking the washing out the machine and carrying the basket to here for me. etc.


    I can see though that the daily grind of dropping me off at radiation and me being so self absorbed with my boob and pain and discomfort is taking a toll on him.


    DeliriumPie you are very brave to try something new - thanks for sharing your helpful experience.


    TanyaF - hopefully radiation will be easier for you than for some of our ladies.


    Ladies who have almost finished rads - Has anyone had blood tests done during radiation? I had before and am scheduled for after but seeing as I keep falling asleep and feel like I am 110 years old I though maybe I should check my iron levels. Any thoughts.


    Ladies who are lightheaded and feel like you can't breathe properly - did anyone suggest you have blood tests?


    Hope you are all OK? I am anxious about you all.

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  • FierceBluebird
    FierceBluebird Member Posts: 758
    edited November 2013


    Thanks deliriumpie, I will ask hubby to pick a box up on the way home! I'm in bed after taking two pain pills so no driving for me. I wish I had gotten them yesterday now. And like you, I'm now going to be behind in my schedule. Went in today but my missing skin areas are bleeding and they won't treat. I'm on hold and will be reevaluated Monday. I was soooo looking forward to getting done this week!!!


    Tanya, welcome to the group. Try not to worry (I know easier said) but as Ms.P said, most women do just fine. I'm just one of the "lucky" ones. And I rarely burn when outside.


    Bounce, I was supposed to have more blood tests (Before, middle and after) but forgot about the middle ones. Come December I will have been in treatment for an entire year. This has taken a toll on my whole family. I'm sure they are sick of me being sick! I totally stole your radiation manicure idea and my daughter did my nails for me last night. The RO office loved it!

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  • Bounce
    Bounce Member Posts: 574
    edited November 2013


    Bluebird - Please post a picture of your manicure - it will make my daughter's day.


    I think its sometimes little things like that that show kids we are going to be OK and make them feel good to be helping with something fun instead of with chores.


    I hope that from your last rad zap you go from strength to strength and just keeping feeling better and better.


    A year is a long time when its full of fear and tension and ill health and pain.


    I hope that the coming year after rads flies by in good health and family contentment.

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  • kirklandgal
    kirklandgal Member Posts: 63
    edited November 2013


    I am done!!!!!! Yea!!


    I am still short of breath and lightheaded. My MO ordered a bunch of blood tests. I'm a little bit anemic but not enough to account for my lightheadedness. She gave me an extra liter of fluid with my Herceptin hoping that it would help. My RO said it was too early for radiation pneumonitis. He suggested it could be another blood clot to my lungs and suggested a CT (I had a blood clot during chemo and am on a blood thinner) - he would've ordered it but I told him I'd rather go through my MO for it. If I don't get better in another day or two I will call her to see about getting a CT scan.


    For the last few days I've had what I though were dried clumps of Miaderm in my radiated area. I slather the Miaderm on pretty thick and have had visible dry lotion on my skin before. But yesterday when I was picking at one of the clumps I also pulled off the adjacent non-radiated skin. Oops - I guess it wasn't Miaderm these past few days after all but dead clumps of peeling skin! Ick! My RO said to expect the skin to get worse for another week then to start healing!

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  • MsPharoah
    MsPharoah Member Posts: 1,034
    edited November 2013


    Krklandgal, congratulations on completing your treatment! We can see you shining from here. Hopefully you will feel well enough to celebrate a little. Let us know how you are doing.


    Love, MsP

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  • SophiaMarie
    SophiaMarie Member Posts: 352
    edited November 2013


    Bluebird and Delirium I'm sooooo sorry to hear of how bad you are having it! The woman coming in after me had skin turning black and was told she'd probably open up too. What's happening to you is what we all fear. I sure hope what Delirium tried can help you both. I am one week done from my boosts. It's amazing how quickly it all calms down. I didn't get open ulcerations, but my scar and under my breast got kinda raw. I would highly recommend acupuncture though - seriously, after a treatment I don't feel hardly any soreness for the week! I swear it helps with healing too. Plus she gave me some homeopathic that will help remove the "heat" from the radiation - that I will start in a few days.

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  • DeliriumPie
    DeliriumPie Member Posts: 1,370
    edited November 2013


    hi ladies. I am waiting for chemo right now. It is packed today! It must be the upcoming holiday. Please know that I didn't mean anything negative by the word shocked in my previous post. I just meant that I didn't realize we were in the minority. Which is definitely a good thing! I think I am looking forward to rads for the first time today. I can't wait to tick one more off and the pain isn't as intense today as it has been the last few days, so bring it on! I hope everyone has a lovely afternoon.

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  • anne11595
    anne11595 Member Posts: 101
    edited November 2013

    I have 3 more to go!!!!! Boost is going pretty good so far. Underarm still raw but finally got some silver sulfadiazine cream. They say it a miracle cream. Plus got pain pills. I will take both . I hate pain pill but i was getting to crabby to my husband. So now i sleep a little better.  My husband said the cyst in my chest looks like a bullet hole. It slow healing because its so close to were the rays are. It is so true how different everyone is plus the treatment are. But we will sooner or later be done and felling like our selfs again!!! 

    Happy hump day everyone! Plus gentle hugs!

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  • batcatlady19
    batcatlady19 Member Posts: 138
    edited November 2013


    Just had my CT scan & tattoos, & the dr is writing up my plan - the estimate is that I'll start rads the first week of December (Thanksgiving holiday is bumping things out a little). Looks like 33 treatments, which puts me thru the end of January. Eek! I'd hoped to be done before then -- my hubby & my BFFs have planned a trip to DisneyLand the 1st week of February for me to celebrate being done with cancer! Well, we're going no matter what, we've all booked & paid, hah.


    Speaking of DisneyLand, the CT scanner & previously the MRI kinda remind me of the start of Space Mountain. Not quite as fun, but it helps to remember something awesome like that when I'm going into those machines :)

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  • lindacam
    lindacam Member Posts: 161
    edited November 2013


    Just started rad yesterday..Total time of appt 20 min..actual zap time 55 seconds

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  • MsPharoah
    MsPharoah Member Posts: 1,034
    edited November 2013


    Batcatlady1....when I had rads, I thought I wouldn't get to attend my grandson's birthday because I would have been at treatment 27 and was expecting to be too miserable to fly. As it turned out, I took a chance and booked the flight and had a lovely surprise weekend with the family. I then had treatment 28 and started the boosts to the tumor bed. The skin in the non-boost area actually started to heal before my boosts were done and it was smooth sailing for me. So I am going to shine some radiant fairy dust on you so that your treatment also goes smoothly and you have a wonderful celebration.


    Lindacam, woo hoo! Sounds like your center is very efficient!


    Keep shining and radiating healing!


    Love, MsP

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  • denilynne
    denilynne Member Posts: 102
    edited November 2013

    Good luck batcatlady!

    Same to you lindacam. I'm glad you brought the actual zap time up, it's interesting. I get 3 zaps on the left side of my right breast, 11 sec, pause, 1 sec, pause, then 1 sec (this last zap on this side has a lower tone to it than the rest. I have no idea why). The on the same breast, the machine rotates to the right and I get 3 zaps on the other side. 14 sec, pause, 1 sec, pause, 1 sec. That's it. I take the tape off my left boob and I'm outta there!

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  • honeybair
    honeybair Member Posts: 746
    edited November 2013


    Completed radiation treatments tonight and my RO presented me with a graduation certificate and presented it to me in a graduation ceremony she so delightfully presided over. She is such fun and I really love her as I am sure all of her patients do.


    My skin has held up beautifully and I enjoyed removing all those stickers after I came home.


    It is good to have completed this step of my journey to wellness.


    For everyone who is still in treatment or who will face it, I wish you the best.

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  • lindacam
    lindacam Member Posts: 161
    edited November 2013


    If I did not have to drive 2 hours each way it would be a breeze...The centre does not have a big list of creams they recommend just Aveeno and a couple I have never heard of..any recommendations?

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  • ItIsWhatItIs2013
    ItIsWhatItIs2013 Member Posts: 541
    edited November 2013

    Congrats Honeybair...!!!

    It gets better and better every day from here on out. Today is exactly 2 weeks since my final zap & boobie is practically back to normal color. Zings of oain are fewer and farther apart. None today! And energy is better everyday.

    I think a lot of the positive healing has a lot to do with knowing IM DONE.. so be it!

    Hope everyone is doing as well as possible!

    Lorrie

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  • summergal
    summergal Member Posts: 208
    edited November 2013


    To everyone starting, finishing, in the middle or so close to the end you can taste it...just wanted to send you a goodnight kiss and a wish for a sweet dream tonight. It is so good to be able to link arms with you and walk into the storm together. XOXO

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  • wyo
    wyo Member Posts: 541
    edited November 2013


    HI all


    Still waiting to hear from my friend on skin recommendations- she did not answer any email today so maybe she is out I will get an answer and post as soon as I go


    Lindacam- these are the topical agents straight off my Breast Radiation:Skin Care sheet- Aloe Vera Gel, Aloe Vera Lotion, Aquaphor, Lubriderm or Miaderm.


    They recommend deodorants without aluminium (Toms of Main and Crystal) I use Crystal and Burts Bees which is also aluminum free. Also suggest cornstarch as a dry lubricant- it helps the tissue "rub" together easier in skin folds etc. Only put this on intact skin. Last but not least hydrocortisone cream 1% for itchiness. They say NO zinc oxide and I can't shave my underarm.


    Hope this helps

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  • lindacam
    lindacam Member Posts: 161
    edited November 2013


    Thanks so much. Love to get second opinions as each clinic does it different.

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  • FierceBluebird
    FierceBluebird Member Posts: 758
    edited November 2013

    Woo hoo honeybair!!  

    Iswhatitis, so happy to hear things do get better. I still haven't turned the corner, actually I can't even see the finish line from where I'm at but it's good to know it's out there somewhere. Heck, I'm still floundering around trying to find summergal's hand to grab in this sh*%storm!

    I've been laying in bed since yesterday morning. Can't move without intense pain. Hubby came home with another$100 worth of stuff to try. Poor guy just wants me better. I think time is the only thing that will help at this point. I'm pretty convinced that lotions, potions, and magic spells really have very little to do with how your skin holds up and  are more of a psychological comfort measure. Everyone's skin and radiation dose/angles are different so it's hard to compare.

    Speaking of things to try, here's my list. I'm afraid to start adding up how much we've spent!

    Doctor only wanted pure aloe and aquaphor, so before and during first few weeks this is what I used. Made my own aloe and used fruit of the earth.

    Things looked great, (until suddenly they didn't)and I started using calendula moisturizing cream, calendula ointment (boiron), bioactive calendula salve, curad petrolatum dressing that doctor gave me, aloe life gel, Aubreys organic aloe spray, hydrogel burn gel, lidocaine 2%, benedryl gel, hydrocortisone cream, neosporin with  pain relief, hemorrhoid cream with pain relief (second doctors suggestion)domeboro soaks, and last night Lindi cool skin roll and hydrogel pad.

    I am singlehandedly reviving the economy!

    I have a new appreciation for drug addicts seeking their next "fix". I'd try anything to take this pain away, but I now know only time will heal. Radiant scorching bright light rays sent out to all you beloved ladies!

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  • PRB1956
    PRB1956 Member Posts: 444
    edited November 2013


    I know this is a sensitive subject, but have any of you who chose a lumpectomy with radiation regretted it? Do you wish you had gone with the mastectomy? I am an worrier by nature, and neither one of the these options appeals to me.


    I'm meeting with my breast surgeon tomorrow to discuss a mastectomy. I'm also scheduled for the radiation simulation on Monday. One of these days I have to make up my mind. I'm so fearful of both, and there are times I am so frozen with fear that I think my best choice is do o nothing. I swear, if I didn't have a 12 year old daughter to raise, I would choose nothing and just try to live again...if that is ever possible.


    I realize this forum is for support, and putting negative comments out here might not be appropriate ... but if you wish you had opted for the mastectomy, I'd love to hear your reasons. Feel free to PM me.

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  • MsPharoah
    MsPharoah Member Posts: 1,034
    edited November 2013


    PRB 1956, I have no regrets about choosing lumpectomy/radiation. If you are unsure, you should finish getting all the information you need to make your decision, including the risks and complications associated with mastectomy. And once you make the decision, don't look back. There are no easy/good choices with breast cancer treatment. As I told my husband after we visited the plastic surgeon...."Nothing good is going to happen, we have to choose the best from a bad set of choices."


    Good luck, sweetie. This is definitely the hard part.


    MsP

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