January 2018 RADS group

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  • GolferTO
    GolferTO Member Posts: 7
    edited February 2018

    Thanks Katiejane. I started T yesterday but have decided to only have one ever other day for the first few days, in an effort to ease into the side effects. I have also added magnesium supplements, based on the advice of others in these forums.

  • Skookum
    Skookum Member Posts: 45
    edited February 2018

    I had the strangest thing happen today. I was so tired when my alarm went off I hit the snooze button a few times. Really, from 8:45 until 9:23...then I realized I needed to be ready in 7 minutes. To say I looked a sorry mess this morning would be a great big understatement ! But I had time to brush my teeth, wash my face and slather some moisturizer on my face. No hair brushing, just pulled on clothes. When I got to the RO office I was getting ready for my treatment when I saw 2 of the pads used to protect the really sore radiated area looked like they were dirty, I looked closer and I thought, how did melted chocolate get on the pad? After treatment I saw my RO and my nurse and I looked in the dumb full length mirror again and I realized the brown melted chocolate on the pad was me. I’ve started peeling an the section under my arm was really burnt, that’s what looked like melted chocolate! Oh my, I had a nice little laugh at myself and my nurse gave me clean pads! Like I’ve said before I can laugh or cry, I’ve cried enough since October, so today I laughed. Only 2 treatments left!

    Monday I start on Anastrozele, my MO said no tamoxifen because my body is post-menopausal. Hopefully this won’t turn my skin green!

  • scaligirl
    scaligirl Member Posts: 74
    edited February 2018

    Oh my gosh I haven't been on her for days and Bell, Bea, Chips, Hershsey, and Mama, just WOW you guys are all done!! So happy for you all!!

    Skookums you are so close! That chocolate story is so funny. I had that too a little bit.

    I was supposed to start Tamoxifen last week but found out when I met with my Onc that another medication I take is not good with it. Basically blocks it from being effective. My primary had taken over that rx some years ago, but I changed primary docs in Jan and the new one is not comfortable changing it so here I am a week later still trying to get an appt with the specialist who prescribed it to me 8 years ago. Crazy stuff we go thru to keep cancer at bay.

    In the meantime, cancer med free me is watching my skin heal and peel, happy to see my hair still coming back, and obsessing over how rock hard my lx site is. I swear it's like I have a rock in my boob. At least it stopped hurting. Walking around with my hand in my shirt was getting a little ridiculous lol.

  • Katiejane777
    Katiejane777 Member Posts: 109
    edited February 2018

    Thanks Smash! That made me feel better. Weirdly my nipple perked up today lol. I went to physio today and she said my skin looks great and she thinks me doing the lymphatic drainage massage and seeing her regularly has really helped stave off excessive swelling. She put tape on it today after my massage and laser treatment and it looks so much better only 10 hours later. The orange peel looks a lot less pronounced and the redness looks much better than it did before. I would recommend a good, lymphatic trained physio if you are having swelling. :)

  • Katiejane777
    Katiejane777 Member Posts: 109
    edited February 2018

    Aww Skookum that sounds both funny and painful. I hope your skin starts feeling better ASAP! I was so tired just before treatment finished and the week afterwards but just over a week later I feel so much better. Just as well as we pick up our new puppy Saturday!!!!

  • hhuey
    hhuey Member Posts: 151
    edited February 2018

    woo-hoo rang my bell today..25 and 5 boosts in the books..my doctor said I am considered to be in remission now but for some reason I hesitate to be overly excited...still have to go every 3 weeks for her cep tin but the active part of treatment is over..I swear

  • HersheyKiss
    HersheyKiss Member Posts: 550
    edited February 2018

    That is wonderful news, hhuey! Hip, hip, hooray! Congratulations on finishing rads!

  • Anonymous
    Anonymous Member Posts: 1,376
    edited February 2018

    hhuey, Wonderful news!!! RING RING RING!!

  • Katiejane777
    Katiejane777 Member Posts: 109
    edited February 2018

    Yah Hhuey!!!! Congrats on being done!!

  • Wonderwoman386
    Wonderwoman386 Member Posts: 48
    edited February 2018

    Hi I've been lurking on this feed for a while, I'm 17 out of 30 rads in. I get a boost everyother treatment, they apply a thick silicone sheet to my chest and it concentrates the beams to my skin since i had tumor growth there. I sailed through the first 11 treatments with light pink skin and lathering on lotion.

    Apparently now I'm having a moderate to severe skin reaction, at first they thought it was folliculitis, but as time goes on its evolving and getting very painful.

    I have used aloe plant, aquaphor, calendula cream, hydrocortisone cream.... My skin is raw and bumpy, bright red, swollen like hives get in some areas but not open yet thank god. Weekend "break" hasnt slowed it down and it even got worse regardless of notreatment those 2 days.

    Has anyone else heard of this? My RO saw me today and recommended trying vit E oil but it says right on the label not to be used for rashes or wounds which is pretty much what I have.

    I use large gauze pads, ace wraps and a sportsbra to prevent friction which she also suggested, but nothing seems to be slowing down the breakdown and i have 11 treatments left.

    Its painful and frustrating and making it difficult to care for my baby :(

  • Neanie44
    Neanie44 Member Posts: 73
    edited February 2018

    hhuey- Congratulations on being done and ringing that bell!!! Skookums- you should finishe today as well.. right?

    Wonderwoman- I hadn’t heard about using a silicone sheet with treatment.. could it be a reaction from the sheet? Ask RO if Miaderm would help. I know all drs are different, but that’s what mine swears by. I’ve used it consistent and skin hung in there well until about a week ago. Now it’s burned, itchy, tender and starting to peel, but overall not to bad. Most of the discomfort I feel is because of the swelling and some sharp pains I get every now and then and Tylenol helps with that. Keep us posted.

    Hugs!

  • CindyNY
    CindyNY Member Posts: 1,022
    edited February 2018

    Hhuey- congrats! It's great to have completed rads.

    I finished on 1/18 and at bed time I still slather on some Aquaphor. I never peeled, skin held up well; did itch like crazy for a while, amazing how we can ignore it when you know you can't scratch it!

    Onward warriors.

  • Skookum
    Skookum Member Posts: 45
    edited February 2018

    I am done! No bell to ring, but I got a diploma signed by my technicians.

    I was so excited for the last zap, I couldn’t get myself to settle down and breathe correctly.

    I lay there laughing and crying...said damn once. Thank goodness for technicians who have a sense of humor and understand, to a degree, what is going on in the patients brain waiting for the last zap!

    Thanks ladies for all your support, kindness and laugh during this kind of yucky time in our lives.

  • JenRuns
    JenRuns Member Posts: 350
    edited February 2018

    Rang the bell today! I'm done too ... 25 proton treatments and 5 boosts to the scarline and I'm done. Rang the bell, got a little weepy, you know the drill.

    Skin's looking OK ... my chest is still red, dry and itchy (folliculitis for me too). My neck is dry and red. The worst is my armpit, which has one tiny open spot (most skin reaction as opposed to the dry flaky skin elsewhere), so they gave me a soak solution to use throughout the day to dry it up.

  • HersheyKiss
    HersheyKiss Member Posts: 550
    edited February 2018

    Yay Jen and Skookum! You did it! Here's to your health!

  • scaligirl
    scaligirl Member Posts: 74
    edited February 2018

    hhuey, Skookums, and Jen, congrats on finishing!! Welcome to the Rads Grads!

    Wonderwoman, welcome and I am so sorry your skin is having such a bad time. Definitely keep asking your RO about different creams. My ROs swear by AVO Cream, which is Rx for wounds and 2nd degree burns. I hope you find some relief soon. Hugs to you!!

  • Wonderwoman386
    Wonderwoman386 Member Posts: 48
    edited February 2018

    so I met with my RO again today, she was very transparent which I always appreciate.

    The silicone sheet they put on me every other treatment is called a bolus, and because of my path report, it’s a better treatment plan for me instead of boosts.

    That being said it concentrates the beams more towards my skin and my reaction although bad- is not unusual nor unexpected. They were just hoping it would have held up a little longer. They didn’t want to scare me when we started, so they kept things basic, stressed tue importance of hydration and have been reassuring me along the way.

    She said I can put whatever cream I want on it and she gave me a list of “....except/avoid.” Basically, the only goal and use of creams is for comfort. She said there is no slowing down the reaction, making it better, or healing during treatment. She advised me not to waste my money, that the best was aloe and a thick layer of aquaphor- which they give me for free.

    She said she rarely does breaks and that yes my skin is bad but not bad enough for a break, which did make me feel better.

    I have the list of side effects, I feel like I was well educated and supported by the staff before treatment, I did my own research- I guess I was just hoping to sail through and I didn’t expect this. After all, nothing is as bad as the chemo I just did right??

    I’m so jealous of you ladies ringing your bells, I have 10 more, I’m in the final push, maybe that’s also why this is hard, because I’ve come so far and done so much and I’m so close to the end of active treatment.

  • Neanie44
    Neanie44 Member Posts: 73
    edited February 2018

    JenRun- Congratulations to you too!! Ring that bell loud and proud!!

    Wonderwoman- it is a good thing that they don't want you to take a break and I also believe thats a good sign, just sorry that you're suffering so much. Hang in there...not to much longer. I remember when I was told I had 33 treatments after just finishing chemo, I thought it seemed like an eternity. A daily routine of going to work, leaving work to go to treatment and then sometimes back to work seemed like I was constantly on skates, but today it all came to an end. Rang the bell and now preparing to move to the next phase. You're almost there and you'll be able to put this behind you.

    Hugs


  • DownNotOut
    DownNotOut Member Posts: 99
    edited February 2018

    Gosh, ladies, it has been quite a week and I have missed you all so much!! I'm happy to catch up tonight after watching a movie with the kiddos and sending them to bed...

    Jen, hhuey, and Skookums, Congratulations! And you, too, Neanie! I'm fast catching up to you and I am thrilled that you all made it through! Hip Hip Hooray!!

    I haven't had to do the cabbage leaves all week because my swelling is so much better and I have made friends with my nipple again - I can even lotion that area up without wincing! My issue now is this itchy rash - may be folliculitis like some of you are describing. It started with 5 or 6 itchy bumps but is now over my whole upper breast/chest where I am red, and it drives me a little crazy night and day. Hydrocortosone not helping. My tech today suggested a diluted vinegar soak which I did for 10 minutes (2Tbs white vinegar in 2 cups water and soaked a washcloth in it and laid on affected skin). It seems to have taken some itch away, so I'll definitely try it again. Y'all know that if I find something that works for me, I will share it!

    Wonderwoman, welcome to you! I am so sorry to hear about your skin. You have really been through the ringer since your diagnosis! Your attitude is so good and it will all be worth it in the end. By the time your sweet baby is old enough to remember day to day things, you will be through all of this! All the best to you and I will say a prayer for your painful skin.

    I did #17/20 and I finished my whole breast rads yesterday and began boosts today. I'm a little nervous because a smaller area is getting more and longer zaps, but we will see what happens. I am really proud of all of us for making it through another week of rads. We are strong!

  • Neanie44
    Neanie44 Member Posts: 73
    edited February 2018

    DownNotOut- the boosts are not bad. I had 8 and thought I wouldn't make it through, but for me it allowed the rest of the skin to start healing and peeling. Hang in there.. The end is so close.

    Hugs!

  • Skookum
    Skookum Member Posts: 45
    edited February 2018

    Wonderwoman- hope your skin is holding up. Hug on your little one, nothing better than hugs from little humans for calming love.

  • Anonymous
    Anonymous Member Posts: 1,376
    edited February 2018

    JenRuns and Skookum, Congrats! I am sure there is much relief for y'all. Woot Woot!

    Wonderwoman, So sorry for all you are going through with such a small child. Hang in there. You can do this!!
    4 more boosts to go. Front skin is holding up well. I have some irritation on my upper back, oddly. No complaints, though. Ready for all this to be in the rearview mirror.
  • Smashleywnc
    Smashleywnc Member Posts: 13
    edited February 2018

    HI everyone!

    Today is Sunday. I am so thankful for the weekends giving my skin some time to recuperate.

    I finished week 4 of 6 last week. My skin looked very red/tan on Friday but it has calmed quite a bit over the weekend. I can now see a very clear outline of the area getting radiated. The cabbage leaves are so lovely to apply when I get home! I really feel like they help. <3

    I'm also using fresh aloe leaf twice a day, a aloe/cucumber spray a friend gave me, organic calendula oil and hylauronic acid serum. Hoping this combo carries me through next week, which is my last week of full breast radiation. Also, my RO gave me a prescription cream for the itchy rash - for those of you not getting relief from the OTC hydrocortisone, maybe the prescription version would help?

    I forgot to do the green tea compresses this week - am I the only one who feels like this radiation is affecting their brain? I've become very forgetful. Fatigue hit full force last week and I had to call on some friends for support. There were a couple of days I just had to lay down all day! I also had a couple of emotional outbursts last week that seemed to come out of nowhere? My MO said the fatigue brings this on. Have you all cried for no reason?

    I have RA, which I put into remission naturally two years ago. I have been worried the radiation might cause me to get a flare. My MO didn't think there was a chance but my shoulder on the side getting radiation is acting up - I'm very sore/stiff on that side now. The muscle on the back of my shoulder is definitely getting radiation and is sore/swollen. I'm hoping it will disappear after the radiation is over. For now, my MO is sending me to PT so maybe that will help? Anyone else having pain in their shoulder?

    I'm just hoping to make it through next week without burning too badly. The following week will consist only of 4 boosts. The best news I've received lately is that I don't have to make up the day I missed when I had the flu! It looks like she cut one of the boosts. So I'll end up having 29 instead of 30 treatments. Whoohoo!


    Hope y'all are having a great weekend.

  • Smashleywnc
    Smashleywnc Member Posts: 13
    edited February 2018

    Neanie44 -

    I was looking at your byline and wondering why they recommended chemo for you? Did you have a high oncotype score?

  • Skookum
    Skookum Member Posts: 45
    edited February 2018

    Smashleywnc- I thought my brain was stopping completely. I couldn't remember words, I forgot things like my purse or phone. My husband was very aware and I was feeling frustrated. I finished 4 bursts on February 22, the full breast treatment ended more than a week ago. My husband noticed and mentioned that I was already remembering better. Still not perfect, but noticeably better. I'm so glad.

    I also noticed a pain in my left shoulder. I have fibromyalgia, hoping this doesn't cause that to get worse!

    I rest my arm on pillows while sitting or in the car. If pillows aren't available I rest my arm on a table or my husbands elbow. I also never sleep on my left side!

    My husband told me the red radiation marks on my back are getting noticeably lighter.

    I agree, the frozen cabbage leaves have felt heavenly.

    Hope your last 2 weeks your skin holds up and the days fly by

    Now for my question, after my bursts under my left breast, my skin was so hot and painful I would cry. Fortunately it was in a focused area of the breast so was manageable. Anything other than lotioning up for those places, any ideas for what might help?They're still quite painful and my left arm feels sore and hard to hold up at times. I see my RO the 8 or 9 of March. But I'm hoping by then I'm really better. For now even putting on the lotions and ointments hurts and stings. For now I just grit my teeth and hang on. Any ideas that might help?

  • Wonderwoman386
    Wonderwoman386 Member Posts: 48
    edited February 2018

    so I’ve always been a skeptic of essential oils, but when I talked to my RO last and she said “use whatever makes you comfortable at this point” my friend offered to make me a salve and I said “what the hell I’ll try anything!!”

    I got instant relief from itchiness, after 12hrs all the bumps went away and my skin didn’t feel as “hot” I’ve used it all weekend and it’s been heavenly.

    I don’t know the exact measurements but it’s: coconut oil, frankincense oil, lavender oil, pure olive oil, pure aloe.

    It lasts longer than aquaphor, absorbs well and I’m 20/30. I can’t wait to show my RO today.

    I recommend it for everyoneee!!!!!

  • PVM
    PVM Member Posts: 136
    edited February 2018

    Ladies have not logged in for a while as i am mostly active on a FB page with some of the wonderful ladies here that Paulette has created but wanted to check in & im glad i did as i saw so many of you wonderful warriors done with your rads or almost being done with your rads. Congrats to you ladies that finished & are now concentrating on healing & taking care of you. To those that are almost done hang in there ladies there is light at the end of the tunnel & you shall get there & ring that bell with happy tears. Take care of yourselves & be good to you, they say it needs to get a bit hard before it gets better & i am a firm believer that we will all have much brighter better days ahead. Wishing you all health & not so many SE. To those that are still doing rads continue kicking C in the butt & to those done continue with the healing both physically & mentally - hugs

  • Smashleywnc
    Smashleywnc Member Posts: 13
    edited February 2018

    Skookum -

    Sorry to hear about your boost pain. Your post scares me a bit - I've been hoping the boosts would be less consuming than the whole breast treatments. :(

    Is the pain superficial or deep in the breast. You said skin so I'm guessing more superficial? Is the pain sharp, stabby, burny?

    When you say it hurts to put on ointment it makes me wonder if you have open skin? I would try to see your RO sooner than your appointment - everyone has told me if it is bothering you don't wait as they often have special ointments and creams for bothersome issues. <3

    I felt great over the weekend but today's treatment socked all the energy right out of me. :( The fatigue is difficult for me.


  • Neanie44
    Neanie44 Member Posts: 73
    edited February 2018

    Smashleywnc - My original plan was RADS only and then the Onco score - 44, so out the window with the original plan. Threw me for a curve! Especially, since my BS assured me that I would not see him for 6 months because he never expected it to be aggressive. I finished RADS on Friday and have already started seeing and feeling the difference. Along with the Miaderm, I took Tylenol for the pain. Of course, at night, my skin would dry out and become tight and hot, so it was up during the night and lotion and more Tylenol. Last weekend the skin tore under my arm and not it has split under the breast, so that is painful, but it is not infected. I found the boost to be less overall pain at first, but after I finished, the area became much more sensitive and sore - again Tylenol helped. Still tired and more tired though, like all energy snapped.

  • Skookum
    Skookum Member Posts: 45
    edited February 2018

    Smashleywnc- the pain in the boost area is superficial, not the deep in the tissue pain.

    Still hurting when I put lotion on, but I need to remind myself, I just finished the last boost on Thursday. It seems longer ago, it’s so nice to roll over in the morning, even if I’m rolling over only figuratively. Since I still am not laying on my left side. I’ll call my RO tomorrow and talk with the nurse.


    Neanie44- so sorry about the need for chemo. I’ve got to say I hate cancer

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