Spring 2015 Radiation Sisters

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  • farmdau56
    farmdau56 Member Posts: 42
    edited March 2015

    Hi all--Out of Nov. chemo group into spring rads. I had my simulation about 2 weeks ago and will start rads. at beginning of April. So glad to join this forum. Just discovered this today so will have to go back and read all your posts in preparation. Thanks!

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  • MombieZombie
    MombieZombie Member Posts: 509
    edited March 2015

    Nomatterwhat--So glad you looked in on us. Thanks for the encouraging words. Chemo went fast for me. Rads have been another story. But knowing others finish the course to the end helps.

    Farmdau56--Welcome to the group!

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  • Hopeful82014
    Hopeful82014 Member Posts: 3,480
    edited March 2015

    MombieZombie - Good for you for standing up for yourself. If you can stand to, I'd take time after it's all over to document this in a brief letter to the head of the rad. practice/hospital and the infusion center, too. Getting it in writing truly puts them on notice that things need to change.

    Jean, would some ativan or something help with the crawling skin? Maybe just at bed time?

    To both of you, thank you for sharing your experiences with me. I wish you both the very best and am pulling for you.

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  • MombieZombie
    MombieZombie Member Posts: 509
    edited March 2015

    Hopeful82014--My mother told me the same thing. I started writing stuff down to keep my thoughts clear when talking to the doc. I'll be able to pull from those notes. Having a second recommendation just helps confirm that I should do as you suggest. I have done a lot of digging. There are treatment facilities out there that address these issues and try to make women feel more comfortable. I even found a site that sells a kind of shirt for breast cancer radiation treatment. www.thefliptop.com/ They could let women use something like this instead.

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  • zjrosenthal
    zjrosenthal Member Posts: 2,026
    edited March 2015

    Mommie, I get treated at Sloan Kettering and they are wonderful about modesty and respect. The only photo was of my face to be sure of identity. Dressing rooms are not coed and they take care to cover me whenever possible. Love, Jean

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  • sybilskelton
    sybilskelton Member Posts: 77
    edited March 2015

    Neogirl, I had pelvic radiation several years ago for cervical cancer. The worst side effects were diarrhea and fatigue which in my case were absolutely crushing, especially the diarrhea, I lost 20 pounds, but I had 25 treatments. The SEs didn't get really bad until about halfway through, so with only 10 sessions it seem like yours might be less severe. There shouldn't be any problems with skin however, since the radiation is focused much deeper in your body rather than closer to the skin like with breast radiation. (I asked my RO about this and he gave me the idiot's guide to radiation physics, the man does love a white board.)

    Good luck.

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  • neogirl
    neogirl Member Posts: 269
    edited March 2015

    Mombie- Long story short, I got bc back in 2009, had lumpectomy same year and then found out it had spread to bones only, Was put on Tamoxifen for 6 years now with no progression in 6 years, Never had ovarian cancer. Never had chemo. Just recently, was really hurting last week and ONC suggested to do rads. Not sure why I am only getting 10 sessions. I will find out with today's first treatment. Was sorta unsure what to ask the RO when I saw him a few days ago.

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  • Leto
    Leto Member Posts: 42
    edited March 2015

    I am happy to find this group and it sounds like I may be a late starter. I don't get my sims until 4/1. I have already benefited from this group on what I can expect (as Jean stated – a walking treasure map!).

    I am still recovering from surgery and waiting for the right breast to heal a little better before rads start. I finished Chemo in January, BMX and oophorectomy in February, ALND in March, now it's rads for April. What a year it has been!

    I've lost my breasts, ovaries, fallopian tubes, hair, brows, eyelashes, and just about to lose some nails. Modesty was the first thing to go, but I refuse to lose my courage, dignity and self-respect. I have to admit, there are times when even those are hard to hold onto, but when that's all you have left….. :)

    I look forward to hearing about all your experiences as we tread into the unknown realm of radiation therapy. I wish everybody good luck, lots of love and support, and most of all – a long life!

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  • kathy7
    kathy7 Member Posts: 241
    edited March 2015


    I have completed a little over half of 26 scheduled treatments.  My skin is somewhat uncomfortable, but tolerable.  My fatigue is my largest obstacle.  Everyone said, since I came through chemo with out a lot of complaining, I would tolerate this well.  But, I am tired.  Mostly tired of doctors and the disruption to my life. 

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  • zjrosenthal
    zjrosenthal Member Posts: 2,026
    edited March 2015

    I woke up at 6:30am with diarrhea. Hubby had to drive me down to rads. Legs feel like jelly. I managed to down a small glass of ginger ale and took an Ativan to see if it would calm things down. Just trying to sleep/rest up for tomorrows treatment. Love, Jean

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  • cbooklvr
    cbooklvr Member Posts: 66
    edited March 2015

    Hey ladies, lots to catch up on as usual :)

    I got my start date, Monday 23rd. I have meetings in city that is a 90 min drive each way. Glad they will be done tomorrow.

    Cherice

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  • cbooklvr
    cbooklvr Member Posts: 66
    edited March 2015

    Jean, hope the meds help and you feel better tomorrow.

    Hi Leto, looks like we are following each other. Welcome

    Kathy I agree with the poking, prodding and peering fatigue. I keep telling myself it will be over eventually

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  • farmdau56
    farmdau56 Member Posts: 42
    edited March 2015

    As I prepare for radiation treatments (early April) I have a couple of questions for those of you who have already started:

    Have you given up wearing a bra?? The nurse who did my radiation "education" said it is best to go bra less or wear only camisoles. Don't think I can get away with no bra at work...

    Nurse also said to dust myself with cornstarch at least 6 times per day. Are others doing this and does it really help with skin issues?

    Is the fatigue worse/better/the same as with chemo.? I feel like I'm just getting some energy back and it will be a bummer to go back to square one. I realize it is different for everyone.

    thanks in advance for any advice--my best to all!

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  • Beachbum1023
    Beachbum1023 Member Posts: 1,417
    edited March 2015

    farmdau56, I just finished rads 33 last Thursday. I was told to use 100% clear Aloe Gel, and when it got dry Aquaphor. They gave us samples. Do not use any deodorant/antiperspirant with aluminum as it reacts with the radiation. I did not wear a bra, and I still don't until the burned area peels and heals. A lot of ladies wore sports bras or a cami top. I wore large tee shirts as the Aquaphor is greasy. Wear them over it at night since you won't want to get it on your sheets etc. Drink plenty of water to hydrate. Eat plenty of protein to heal. I was told to take Ibuprofen to reduce the swelling and help if there is any pain. The fatigue didn't hit until the last two weeks, but it is not even close to chemo fatigue. Way better, and I feel pretty normal today. I used hydrocortisone for the itch but it dries the skin out. It should be pretty easy for you. I was just tired of running every day. Good Luck!

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  • MombieZombie
    MombieZombie Member Posts: 509
    edited March 2015

    Hello all.

    Leto--Welcome. Glad you are with us. You've been through a lot, and have more ahead. It all sounds like it's been a hard road for you but you talk like a champion. I admire that.

    cbooklvr--Glad to hear that you got your start date. The sooner started the sooner finished! Luck to you dear.

    Jean--I'm sorry you woke up feeling so crumby today. I hope you feel better soon. I'm glad you have such a great place to get treatment. I am going to be sharing what I've been learning from other women, like you, with my treatment center. Their brochure on the front cover reads: Compassion, Dignity, Hope. They have a few things to learn yet.

    farmdau--I know they advise no bra. I can't stand to be without. My surgical scars from my lumpectomy pull in a painful direction when I am bra-less. My doctor hates it, but I wear an underwire bra by day and a very soft sport-like bra at night. With the underwire I do two things. Because the skin under the breast gets damaged more easily, I wear a non-stick pad (with my homemade radiation cream on it) under my breast. It keeps my breast from sticking to my ribcage and making sores. I also use a cotton baby washcloth under the whole cup of the bra and it sticks out the underwire lines so that my skin is protected from the harshness of the wire. My doctor is seeing that this is working so far, so she doesn't complain. I am four weeks in. My skin is really starting to have problems, so I don't know how long I can keep up what I am doing. I was told NOT to use cornstarch now that my skin is blistering and breaking because it would be too abrasive. But I have heard of it being recommended by others. I was crazy tired right off the bat when I started. But I am seeing a Naturopathic Onc. He put me on supplements that have got me feeling really good now. I function all day and into the night without too much trouble. The fatigue part of this varies widely with everyone. Take it one day at a time and seek help if you go down hill. Be vocal and let your care professionals know how you are feeling. Lastly, even when I felt my most tired, I would say that chemo was worse. But that's just me.

    Anyone new at this--I was dumb going into this and I somehow didn't know that part of my radiation field would go all the way through me and effect my upper back. I had sores develop there in the first week, along with itching. I have been scratching and rubbing at what I thought was an allergic reaction to something. I was tearing myself up not knowing that I'm burnt back there from treatment. So I'm passing this along, just in case it helps someone not make the same mistake.

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  • zjrosenthal
    zjrosenthal Member Posts: 2,026
    edited March 2015

    4am and still getting up with diarrhea. I finally gave in and took some immodium. It was expired so I hope it works. Drank a glass of gingerale, a piece of dry toast and a little rice in some chicken broth yesterday. Hope I feel better soon. I don't think they allow bedpans on the rads table! :*( Love, Jean

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  • MombieZombie
    MombieZombie Member Posts: 509
    edited March 2015

    Jean, you poor thing. So sorry you are still sick. You just don't need this extra trouble.

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  • Katluck13
    Katluck13 Member Posts: 8
    edited March 2015

    I started radiation on Tuesday of this week, was sick to my stomach, lethargic and weak right afterwards. Went to work right after treatment like this. I forced myself to eat and chugged the water down. I was able to get through the day. My coworkers said my face was so pale and I looked ill. I had some nausea last night but it went away after 15 mins. I was told to wear a size bigger sports bra or bra with no wire. Some of us get ill from rads others do well with it. Good luck all.

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  • JJOntario
    JJOntario Member Posts: 356
    edited March 2015

    Has anyone in this group have their reconstruction done (implants?) I've lost a lot of weight and now with the lx I have so little of my own tissue spread over my implant...it's really freaking me out. I've also heard that you lose weight during rads? I'm having a hard time finding my appetite since dx.

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  • ElaineTherese
    ElaineTherese Member Posts: 3,328
    edited March 2015

    No reconstruction here, but rads has been uneventful for me. I haven't lost any weight or felt fatigue. Rads is just an inconvenience -- something I do every weekday from 1:40 -- 2:00 pm.

    Jean -- I hope you feel better soon!

    farmdau -- I've been wearing a really stretchy sports bra. I bought two sports bras for my lumpectomy -- one is pretty tight (which was good for post-op) and one is much looser. I'm wearing the latter these days. No cornstarch here. RO prescribed a cream, RadiaPlex. I use it three times a day. The radiation therapist says that it's supposed to help with skin repair.

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  • zjrosenthal
    zjrosenthal Member Posts: 2,026
    edited March 2015

    Well the diarrhea seems,to finally left. Enjoying some.


    Well the diarrhea has finally left. I'm enjoying some coffee and a banana. I still feel weak but strong enough to shower and get down for my rads this morning. I hope everyone has a good day with minimal sides. love, Jean

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  • MombieZombie
    MombieZombie Member Posts: 509
    edited March 2015

    Katluck--That's awful you are feeling yucky so soon. I met a gal in my area that had trouble like that. Sadly she lost 50 pounds and she looked so haunted when telling me her story. I will pray for you. I hope that you will adjust and that your symptoms will subside soon.

    Jean-- I thought about you all night. (insomniac) So glad you are feeling better.

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  • Katluck13
    Katluck13 Member Posts: 8
    edited March 2015

    Hi MombieZombi,

    Thank you for the prayers. I'm praying for you and all the ladies on her with BC too Today went well with rads, I had a protein smoothie afterwards and tons of water and did fine :). Starting to itch a little. I need to find a cotton bra with no wire. Any suggestions from ladies that are working through this and have to keep the girls secure in the office?

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  • Curlykat
    Curlykat Member Posts: 85
    edited March 2015

    Thanks, MombieZombie! I do have an appointment 4/2 with the oncs, which is 8 days after my lumpectomy. Your schedule makes me hopeful that I maybe I won't have to wait until May to start rads!

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  • Curlykat
    Curlykat Member Posts: 85
    edited March 2015

    Katluck13 - I just purchased one last night that is very comfortable today. Found it MUCH cheaper on the Hanes site, though. Here's a link to their wire-free selection: http://www.hanes.com/webapp/wcs/stores/servlet/Sea...

    and this is the one I've got on: http://www.hanes.com/onehanesplace/bra/shop-by-cat...

    Paid $30 at Belk, though!


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  • cbooklvr
    cbooklvr Member Posts: 66
    edited March 2015

    Farmdau we are in the same area, are you going to Summit Hospital?

    I got the same instructions, cornstarch every few hours. I can't go braless at work so I got some wireless sports bra type to wear. I start Monday so will let you know how it goes

    Cherice


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  • MombieZombie
    MombieZombie Member Posts: 509
    edited March 2015

    Katluck--So glad you are feeling better.

    I think I've already mentioned it, so I'll try not to be too long winded, but since bras came up again....I still wear my underwire bra. My lumptectomy scars pull and hurt too much if I do anything else. I wear a soft sport type bra at night. I had trouble finding cotton bras I like. So instead, I use the bras I have and I bought some cotton baby washclothes to "line" my bras with. Loving my homemade skin cream. My doc won't let me use the cornstarch because my skin has become too brittle and she feels the grit will break the skin even more. I have my doubts about that, but my cream is helping so I decided not to worry about it.

    Curlykat--I really hope you get your wish about start time. This whole process is so life-consuming. It's just too hard to have to wait for the next step to begin. I don't know about you, but I am anxious to start living my regular life again. I was moving the week I got diagnosed and I'm still unpacking because I had to put my life on hold. I think everyone here can understand your desire to keep it moving forward.

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  • farmdau56
    farmdau56 Member Posts: 42
    edited March 2015

    Hi Cherice! yes, I'm having my rads. at Summit. Just found out today that first session will be on April 6. Going bra/camisole shopping this weekend. Good luck on Monday! Please do let me know how it goes.

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  • Katluck13
    Katluck13 Member Posts: 8
    edited March 2015

    Thank you ladies for the info regarding the bras. I'm off today and will be going bra shopping after my radiation. 16 more sessions to go after today. Can't wait to be normal again

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  • zjrosenthal
    zjrosenthal Member Posts: 2,026
    edited March 2015

    Today finishes my first week. One week down five to go! I can do this. Love, Jean

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