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Radiation October 2018

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Comments

  • GreenHarbor
    GreenHarbor Member Posts: 187

    Oh, Spoonie... you can do this! You’ve gotten this far. Day by day, day by day. All treatments are difficult in their own way, whether it’s surgery, chemo, radiation, AIs, etc, but I truly believe it’s what we all need to treat our cancer. Please try and hang in there- all of us are supporting you! Sending you the very gentlest of hugs.

  • InnaB2018
    InnaB2018 Member Posts: 766

    Spoonie, so sorry you have so many issues! Can you ask the doctor to prescribe you Pracasil ointment? It helps with healing radiation burns. If the doctor doesn’t want to prescribe it, look for it on the internet or order it from a compound pharmacy. I’ve been using it since the beginning and my skin is not even pink

  • RiRi11
    RiRi11 Member Posts: 70

    spoonie, you are not alone. I have been very emotional during radiation, my breast broke out in a rash, my nipple is sore and skin is peeling underneath the treated breast. I only have 2 treatments left. (And nervous about side effects lingering a couple of weeks afterwards)

    I love my radiation therapists but boy do I hate going.

    My friends and family are trying to be encourging with sending texts of my countdown like the day after the 29th (last treatment) Ill be done and my life will be to its old self on the 30th.

    I changed. I feel like someone knocked my puzzle over and Im picking up the pieces. I dont look the same, I dont feel the same, I cant imagine my life ever being the same.

    I feel like Im in a funk and then on Nov 1st I start Tamoxifen. with new possible side effects on the horizon.


  • linda2119
    linda2119 Member Posts: 60

    Hi,

    I made it through my first radiation today - 4% done!
    Question - they put a warm wet towel over my breast for the second half. Anyone else? Sounds like it is to keep the radiation close to the skin. Which sounds to me like it may cause more skin issues, but I don't know...

    -Linda

  • Spoonie77
    Spoonie77 Member Posts: 532

    @Linda re: warm towel over rads site ---> While this wasn't the case for me, I did a quick search via the interwebs and it seems something like this (warm towel, gel pack, etc) is called a bolus. This is what BreastCancer.Org states: "If you are receiving radiation after mastectomy, the therapist may place a bolus (a flat piece of rubber-like material) on top of your skin, which increases the radiation dose to your skin and to the tissues right below it."

    Perhaps this is the case for you?

    There is also a Wikipedia page if you're interested https://en.wikipedia.org/wiki/Bolus_(radiation_therapy)

    Maybe try doing a search on the site for "bolus" for more info?

    I did a quick search for you ---> here's the link if you're interested : https://bit.ly/2PWRErJ

    Should take you to a list from this site of posts that mention rads and bolus. Maybe it will help.

    I didn't have one and not sure if others on this month's group have had this, but hopefully someone will chime in that can help give you a bit more of what to expect. Wishing you the best as you go forward. You're not alone.

  • Spoonie77
    Spoonie77 Member Posts: 532

    Thanks everyone for all the support - it was sooooo uplifting to read when I logged on! So many smiles were lighting up my face, to which I was uber grateful.

    It'd been one heck of a day. Can't count how many times I cried. Even cried while getting the Boosts set up. Thankfully my team was super comforting and talked with me to help me get through it. Took a break and came back to finish the set up and get my first Boost.

    My sister came over this evening and I showed her what I'm dealing with....she was in shock. She'd had no idea how bad things could get. While it's not as bad as it could be, it's still more than I bargained for or hoped for. My team did send me home with some rx creams for the pain and sores. They sting a bit but have seemed to give me some relief. Hope it continues.

    Anyway, thanks again everyone for being here for me, for the virtual hugs, images, and votes of confidence. I'm so thankful to have this new "family" to rally with me. Just to show that my sense of humor is not too much in the dumps, I've decided to go to my last Boost in a Unicorn onesie, since it'll be on Halloween! I know my team will enjoy it and so will I. Who can resist a few laughs? :) I'm gonna bring some treats in with me to thank them all and leave them with a little trick. :) It'll be perfect since it zips up in the front and I can just stroll right into the rads room for the last time as my amazing Unicorn self. LOL.

    May everyone else find the strength and humor to make the final push through....

    Hugs my friends.

    image


    PS -- RiRi, almost forgot to add that I'm in the same boat as you are. Tamoxifen on the horizon. I was supposed to start it with RADs but with all the other SEs I was experiencing team said to wait until I was finished and then start. So you and I will go on that journey together. I'm pretty scared by the SEs as I already live with most of them and dread the idea of the joint pain, fatigue, and so forth getting worse, not to mention adding in hot flashes and the like. Keep me posted on how you do. Wishing you the best!

  • Sidalee
    Sidalee Member Posts: 113

    Spoonie, love the costume idea, so awesome! Thanks to your inspiration, I have a Grinch onesie that I might just wear!

    hapa, glad to see you again, how did your first treatment go yesterday? I had a very hard time emotionally the first few days, I'm kind of numb now. When the machine moves around me and my anxiety rises I try to focus on it killing any little rogue cancer cells that could be hanging out. Thinking of you, I'm glad you made the move to a facility that you felt comfortable with.

  • linda2119
    linda2119 Member Posts: 60

    Thanks for your research, Spoonie. I get what the wet towel is supposed to do, I'm just not sure why. I'll ask the RO when I see her on Tuesday. I fear this means that it is more likely, maybe inevitable, that I will get a skin reaction, especially on the breast tissue. I did have a skin-sparing and nipple-sparing mastectomy. Guess that means there could still be cancer cells in the breast skin. Sigh.

    Does anyone else have this urge to put lotion on like every other minute?

  • mwlimelite
    mwlimelite Member Posts: 34

    Spoonie, I absolutely LOVE the idea of the costume and it's too adorable for words!! Good for you, keeping things light. Every little bit of humor helps!

    I will be joining you and RiRi in the Tamoxifen club at some point after my rads end and I meet again with my MO on Nov. 5 (both on the same day). I am really nervous about the SEs as well and I sincerely hope I will get a couple of weeks break first, but I'll do whatever I'm told. Last night on the phone with my mother (who has made it to 85 never having had cancer of any kind and is very anti-pharma) she says "I wish you wouldn't go on medication." UGH. I tried to explain how I need to make sure I NEVER have to go through this again.... I get where she's coming from but she cannot comprehend the mental strain this disease puts us through, how the knowledge that you had a life-threatening disease that could come back at any point changes your entire outlook on everything. I would do anything to increase my chances of staying cancer free until my deathbed. I do believe in incorporating holistic approaches, diet, exercise, meditation, etc. but not at the exclusion of research-backed medical science. I know some women opt out of things like RT and drugs, and god bless those of you out there with the courage to do that. But I personally don't feel that I have that much strength!

    And with all that said, we'll see how I tolerate the drug! I have a colleague who had a really hard time with Tamoxifen and stopped taking it after 3 years... she's 11 years cancer-free and has never looked back.

    Looking forward to the weekend! Hugs to all of you warrior women!!

  • InnaB2018
    InnaB2018 Member Posts: 766

    My therapists are using the Bolus thingy on me. They explained it like this: every person’s anatomy is different and because of that the chest wall and lymph nodes are located at different depthswithin the body. They use this bolus material to imitate an extra level of tissue that we might not have due to our anatomy. When they are radiating the supraclavical nodes they take it off, because these nodes are very close to the skin.

  • CarolAnnieLumpLump
    CarolAnnieLumpLump Member Posts: 54

    I love your spirit Spoonie. Here you are suffering these awful side effects that we all are afraid of and you plan to wear a fun costume to lift everybody up! You are an inspiration for many. I am hoping you can find some relief this weekend and get some much needed sleep.

    We are brave, we are strong, we are survivors! Enjoy the weekend break ladies.

  • cc738nj
    cc738nj Member Posts: 49

    Same as Inna B. My RO used a 3cm Bolus (they have different thicknesses) for 4 of my 5 "hits". Same explanation, it has to do with depth of what they are trying to zap. During my boosts (only 3 more to go!!!!) they are using a smaller one. Hope everyone gets a little relief over the weekend. I see several of you getting ready to start Tamoxifen - anyone starting AIs after rads?

  • GreenHarbor
    GreenHarbor Member Posts: 187

    TGIF, everyone! 18 treatments done, 2 remaining. I am so DONE with this. The whole radiation routine is getting to me at this point. Physically, I'm noticing some fatigue (worse in the afternoons), I have tan skin and a little soreness. Not bad compared to what some of you are dealing with. To those of you worried about side effects of AI's and Tamoxifen, I started anastrazole 2 wks. before radiation. My RO and MO were both on board with this. My only side effect has been worsening hot flashes. I'm pleasantly surprised. Many people have side effects, but many don't. Wishing you all a good weekend!!

  • palesa2018
    palesa2018 Member Posts: 58

    Wishing everyone an awesome and restful weekend! 5 days out of Rads and I'm starting to feel my energy levels improving significantly. I'm treating my skin exactly as I was during rads. Very sensitive. I still have the Mepitel film on and will let it come off naturally.

    Gentle hugs!

  • linda2119
    linda2119 Member Posts: 60

    InnaB and cc738nj - How is your skin doing with the bolus? I was feeling sorry for myself earlier today - I got the impression from the techs that skin issues are pretty much to be expected with the wet towel. That's discouraging to me.

    Re the AI - I've been on and off anastrozole twice - I stopped during radiation so I can qualify for a clinical trial. My first time with anastrozole was rough until I started taking it in the evening - around 7pm. That made a huge difference in the hot flashes - it was much more tolerable. Second time, I just started at 7pm and it wasn't much of an adjustment. My recommendation is to play around with the time you take it if your symptoms, especially hot flashes, are bad.

    Happy Friday, everyone. Happy slathering!

  • InnaB2018
    InnaB2018 Member Posts: 766

    My skin seems to be doing ok for now. 14 treatments done. 11 more to go. I am going to take AI with ovarian suppression after rads. Not looking forward to it..

  • mLghtn
    mLghtn Member Posts: 68

    Hi everyone,

    I'm starting rads at the beginning of next week. I was in March chemo group and then had sx end of August. I'm sorry to hear sounds like some of you are having a really rough time with it. I don't know yet how I will handle even more pain (still recovering from sx and what the taxane drugs did to my body) and just general crappy stuff in my life from this seemingly never ending tx! You are all strong to be getting through it! I have been very afraid of rads/possible SE's and tried to find a way to not have to do it to no avail. I'm doing hypo fractionated IMRT so I have the higher dose per day but only 15 days with possibly some boosts after, I didn't get the results yet from the CT planning. I'm going to start using the "my girls" cream as soon as it arrives. Supposedly has helped people greatly even if they started using it after being burned when other products did not. It contains calendula, vitamins B and E among other plant based oils (I was told vitamin E was ok on skin and in foods just not supplements). Are any of you already using this product or doing hypo fractionated rads? At least it will be over faster, nervous but still trying to be hopeful at this point.

    wishing you all a nice break from your tx this weekend

  • cc738nj
    cc738nj Member Posts: 49

    Linda 2119 thanks for sharing the AI tips. I asked my MO about clinical trials just today - I don't want to start an AI and not be eligible - especially since I'm looking at some BRCA2 trials.

    My skin did pretty well with the Bolus - it's a bit pink but not painful. Only 3 more boosts so I think it won't be too bad even if the SEs continue for a week or two after as my RO says. Some itching too but again, not bad and benadryl cream gave relief.

    Hope it all goes well for you.

  • Dreamers1989
    Dreamers1989 Member Posts: 19

    wow! Can’t believe how fast time is flying. 10 down and 10 to go!

    Working full time so it’s exhausting travelling to and from the hospital before and after work but very thankful for the amazing staff at Princess Margaret for their efficiency and professionalism.

    Only noticeable side effect has been the colour change. Left boob looks like butterscotch and right side more like milk chocolate. Guess I can live with that ;)

    For my rads sisters- One thing I find really soothing is asking for a warm blanket during treatment. I found it mentally challening the first few days to have my bare breast exposed or even just the gown on while the radiation was happening. With the warm blanket it was almost comforting to just close my eyes and drift away for those minutes. Maybe worth a try?

    Xoxo

  • Spoonie77
    Spoonie77 Member Posts: 532

    Dreamers - a warm blanket sounds lovely! Glad you get that for your txts. Every little piece of comfort is huge in this journey. I have to have gated radiation so I unfortunately have to focus on holding my breath 6 or 7 times a session and that requires concentration....oh how I wish I could drift. I wish you continued speedy treatments! :)


    Mlghtn - I didn't use MyGirls but I think others have. Hope they will chime in and let you know how it worked for them. I did start two weeks ahead of txts with my Miaderm and Calendula twice a day. That was the suggestion of my team. I'm glad I took them up on that as my SEs have been difficult from day one. I can't help but wonder how much worse it could have been if I hadn't listened to them in prepping! Good luck on the start of your treatments next week. Just a heads up, many of us had a "emotional" moment that first treatment. You're not alone if you experience this too. It will get better (emotionally/mentally) as they continue, at least in my experience. Keep us posted.


    Linda -- re the wet towel. Does your team offer other alternatives to the towel as a bolus? I'm not familar with bolus treatments but if there is another alternative that might do the same thing w/o the SEs it might be worth asking. It's easy for me to say, try not to be afraid. Yeah, if it was just that simple, right? But I think your fear is justified. No one WANTS more SEs. EVER. Hope your team can do their best to assure you that they are doing all the things they can to minimize what you may experience. Hang in there.

  • mwlimelite
    mwlimelite Member Posts: 34

    mmLghtn-

    I have been using My Girls since about a week or so before I started rads. I'm at 14/20 and my skin is in very good shape considering. Good moisture and only a little pink. We will see what the next week brings but so far, so good. My friend who had 30 rads treatments recommended it. Her skin never got bad in 6 weeks, only tanned so I am hopeful!

    Dreamers - I am also offered a warm blanket every morning and I never say no!

    Spoonie - I'm with you on the breath holds. I was bummed about that because I had been hoping I could try and meditate. Instead I use the breath bar on the screen to practice controlled breathing. Yesterday we did my boost planning with no breath holds and I actually dozed off lol.

    (for those of you who don't do breath holds - you can see a screen through special glasses that shows you how deep you are breathing so you don't have to guess)

    One more regular tx for me then 5 boosts. I can see the light at the end of the tunnel...

  • Sunshine-Lady
    Sunshine-Lady Member Posts: 3

    Linda~I do bolus every other day and thought maybe I would be able to tell a difference on the days I do versus don’t. So far I can’t tell a difference, other than being cold walking out from having a wet towel on.

    I’m 19 in out of 28 and my skin has pretty much remained the same for the last 3 weeks, red by Friday but a lite pink by Monday (DR day). I’m doing like you, keeping lathering it up hopeful it helps

  • RiRi11
    RiRi11 Member Posts: 70

    Today is my last treatment!!!!


    image


  • Dreamers1989
    Dreamers1989 Member Posts: 19

    will you ring the bell?:)

    Congrats!!!!

  • RiRi11
    RiRi11 Member Posts: 70

    Yes! There is a bell to ring at my Cancer Center and my brother and sister inlaw will be there with me! ☺️

  • mwlimelite
    mwlimelite Member Posts: 34

    Congrats RiRi! Enjoy life post-rads!

  • GreenHarbor
    GreenHarbor Member Posts: 187

    Yay, RiRi! Wishing you all the best...

  • RiRi11
    RiRi11 Member Posts: 70

    Thank 😘 You! Thank 😘You!!

  • palesa2018
    palesa2018 Member Posts: 58

    Awesome Riri! Celebrate that moment!

  • InnaB2018
    InnaB2018 Member Posts: 766

    Congrats, RiRi

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