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Radiation June 2019

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24

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  • edj3
    edj3 Member Posts: 1,579
    edited June 2019
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    I've been tracking it with Chronometer, which has a great read out that's easy to use. My breakfast has a lot of protein in it, I eat a serving of Fage 2% plain yogurt with half a serving of Kashi Go Lean cereal and right there I have nearly 30 grams. My husband makes hummus for me, so there's more protein with lunch. Sometimes I have a serving of peanut butter (which I LOOOOOOOOVE). Trader Joe's makes great high protein veggie burgers, we had those last night. They are really good.

  • edj3
    edj3 Member Posts: 1,579
    edited June 2019
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    And now my breast looks very nearly like I have a terrible case of measles.

  • brooklynmama75
    brooklynmama75 Member Posts: 4
    edited June 2019
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    edj3- Oh no! Does it hurt or itch? I think I am two sessions behind you. So far, just some tanning but no real discomfort. I anticipate the side effects will ramp up a bit this week.

  • edj3
    edj3 Member Posts: 1,579
    edited June 2019
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    It mostly stings. I was fine until #12, but yesterday even the techs commented. It's not horrible, I just figured I was doing well and would escape without any side effects. Oh well, glad I don't have open wounds.

  • Spoonie77
    Spoonie77 Member Posts: 532
    edited June 2019
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    Sorry to hear the skin is catching up with you, Edj3. How's the fatigue? Still there? Increasing?

    Hang in there, ladies. It's a tough road but this part ends. Stay hydrated, rest when you need to, keep your skin lathered with the creams your ROs gave ya, and move when you're able. You all can do it. More than half way there. Sending hugs and quick healing.

  • phlchick
    phlchick Member Posts: 2
    edited June 2019
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    Hi! I started whole breast radiation on my left breast June 10 and am scheduled to finish July 8. So far it's not too bad. But next week I'm adding targeted radiation to my right breast. I'll have to go get zapped in the morning and late afternoon. I'm worried if this will bring on bad fatigue, but all they tell me is that everyone's different. I'm still trying to keep working, too. Anyone have experience with this?

  • doubting-cw
    doubting-cw Member Posts: 9
    edited June 2019
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    nished 6/6/19 and had nothing but redness and weird twinging and deep itching sensations in breast. Then bam!! I am so tired come 7pm or so. I'm mainly a night owl otherwise. I manage to stay up until after the news and that's a struggle.

    The last two days are slightly better once I'm up and had some coffee. Hope this is short term.

    Congrats on finishing. The everyday back and forth is not pleasant

  • moderators
    moderators Posts: 8,185
    edited June 2019
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  • Gonnabeatthis
    Gonnabeatthis Member Posts: 57
    edited June 2019
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    I start radiation Wednesday, hav the trial run tomorrow. Last week I went in and met with the RO for the initial set up and tattoos. Just felt s little prick, had 4 in all. Anxious to get this over with! I’ll have 25 sessions. Anyone else have implants? What were your results? I’m a little nervous about one side looking different. Prior to surgery they weren’t expecting to have to do radiation, the double mx was supposed to be enough until they found it in one lymph node,

  • Pepper44
    Pepper44 Member Posts: 2
    edited June 2019
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    I start 20 sessions of radiation tomorrow. Today I had my test run so I guess I know more what to expect now. I’m doing prone position and got 5 tattoos on my back to line things up. At least I don’t have to see the dots since they’re on my back!

  • edj3
    edj3 Member Posts: 1,579
    edited June 2019
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    First of five boosts today, then I'm done. They drew a shape on my breast and very kindly asked that I do my best not to wash off the marks. I'll try, I said, but I run in the mornings and when I run, I sweat. When I sweat, those marks come off. So no promises.

  • Newfromny
    Newfromny Member Posts: 108
    edited June 2019
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    They asked me the same thing but I don’t run so the marks hung on

  • missouricatlady
    missouricatlady Member Posts: 894
    edited June 2019
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    I see the doctor once a week, just finished #16. How often do you see your doctor?

    I received my first insurance benefit thing at work, and was curious how much a treatment costs. In looking at it, one day there will be 3 charges, and then the next 2-3 days there is only charge. It appears I am getting some extra things on certain days, which is totally confusing, guess I won't be able to figure that one out. The treatment is all the same every day, buzz around you, then buzz back around you.

  • edj3
    edj3 Member Posts: 1,579
    edited June 2019
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    None of the radiation treatments have hit my insurance yet. I'll be interested to see what they cost.

    I've seen the radiation oncologist every Monday (treatment started on a Monday). I see her again four to six weeks after the last treatment on Friday.

    I'm curious why I don't have to hold my breath for the boosts, it's still my left side and it sure looks like it's aimed straight through my nipple to my lungs and heart. Guess I'll consult Dr. Google.

  • missouricatlady
    missouricatlady Member Posts: 894
    edited June 2019
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    I read on here about holding your breath, and I asked my MO about this. He told me, several years ago, with the equipment we had then, it would have been beneficial for me to hold my breath. He said now, I can hold my breath if I want to, and smiled. That is as much as I know about that! I asked them about boosts, and I get 5, the last 5 treatments.

  • edj3
    edj3 Member Posts: 1,579
    edited June 2019
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    There are some good studies showing that deep inspirational breath holds do help spare the heart and lungs, especially in left breast radiation treatments (which is me). You can read the study here, and here's an excerpt from the conclusion:

    DIBH is an important tool for cardiac sparing and has been reproducibly associated with a reduction of mean heart dose. This benefit is the greatest in those patients with left-sided disease and those receiving IMC irradiation.


  • Spoonie77
    Spoonie77 Member Posts: 532
    edited June 2019
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    I had L breast/etc RADs, this is a part of the hand out I received from my RO explaining Gated Breath Holds. Not everyone that will have RADs on the L side will need to do this, that's part of what the intial screenings/CT Scans are for in order to determine where that specific patients heart is in regards to the treatments they will need.

    Also included are my ROsdrawings explaining the different levels of node RADs that may be necessary, and how RADs beams might affect my lungs/heart/ribs/chest wall. Plus, my own notes in regards to it. Maybe it will be helpful to those going through it soon.


    image


    image


    image

  • Spoonie77
    Spoonie77 Member Posts: 532
    edited June 2019
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    MissouriCat & EDJ3 ---> I didn't get anything via claims to my insurance until about December. When I did get them, the totals shocked me. The total from just my LX and my RADs (not including dr appts, other screening/testing/BRCA/Oncotype, pre surgery scans/MRI) was nearly $100K. Thankfully, I have Medicare and only had a minimal Out Of Pocket to cover. Otherwise, my LX and RADs would've bankrupted me. I had no idea how expensive everything was going to be. While I had good coverage, I know so many struggle with the costs. I hope your own insurance will not leave you hanging out to dry. My Oncology Social Worker helped me apply for some one time grants to help with gas costs and to purchase healthier foods during active treatment. That was a godsend too. I know every state, country is different, so I'm not sure what may be available in your area, but ask your MO/RO. They should be able to suggest who to talk to to connect with someone to help you navigate. I do know that the American Cancer Society has a program called Road To Recovery, which I needed to use a few times to drive me to treatments. They have other resources listed for cancer patients as well that can be searched by state. Maybe this will help someone.


    Screenshots of my surgery claims....over $25,000 for my LX, a 5 hour recovery, and then sent home.

    image


    image



    Screenshot of the total for my 4 weeks/5 boosts of RADs.... Nearly $65,000 in all. About $2,100 a session.


    image

  • edwards750
    edwards750 Member Posts: 1,568
    edited June 2019
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    I had radiation too but I never bothered to read my EOB because by that time we were 100% covered by BC/BS. I knew it would be expensive. I had 33 treatments so If we hadn’t had 100% coverage at the time Iwould have been stressing because of the cost of that and all the other zillion bills that come with BC. The lab costs floored me too.

    I know the exorbitant bills have bankrupted some ladies. They have emptied their savings and dipped into their checking accounts. I did do a monthly pay on a monster lab bill. It took awhile but we paid it off by the end of the year.

    Idk what people do who don’t have insurance coverage or have limited coverage. Btw thanks for the helpful advice Spoonie. I’ll pass it on.

    Diane

  • missouricatlady
    missouricatlady Member Posts: 894
    edited June 2019
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    Thank you girls for all this information, I really appreciate it. My out of pocket is what is getting me, and I have BC/BS, $3500 a year, with a diagnosis in November, I hit $7000 right off the bat. I have a feeling I will get it for 2020 as well. I am on a payment plan for 5000 years feels like, but this too shall pass. Best wishes to you today. Hugs, Lisa

  • edj3
    edj3 Member Posts: 1,579
    edited June 2019
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    Yeah BCBS helpfully shows me the total amount of claims so far this year. Without radiation (because it hasn't hit yet), I'm at just under $44k. Ouch.

    Three more boosts and I'm done with radiation and I will be very glad. The techs had said the boosts were easier and yesterday I told them they lied. They said well they're shorter and you don't have to hold your breath. OK, OK, fair enough, but gosh my nipple is mad.


    (sentences I never thought I would write: my nipple is mad)

  • Kstinekd
    Kstinekd Member Posts: 12
    edited June 2019
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    Hello, all. Just checking in post-radiation. The last week of my 25 sessions started with some pain under my arm and under my breast. I finished six days ago and the pain is still there. Hurts to touch and hurts to move my arm if it rubs against my body or stretches. I am using calendula, aloe and another cream called Forty Cure Cream. And slathering with aquphor overnight. My nurse said I should 'turn the corner' after 10-14 days, so I hoping the pain stops in a week or so. I sleep with a small pillow under my arm to avoid it contacting my body. I hope that everyone else is doing well. Another note: I had a hysterectomy the same morning as my last radiation. Glad I did it that way. I don't even notice any discomfort from hyterectomy bc I am distracted by radiation pain. It's a funny thing to find happiness in...but ...Hurrah! :) Wishing you all well!

  • mom2bunky
    mom2bunky Member Posts: 54
    edited June 2019
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    Hello friends, I start radiation today. RO told me 16 sessions, but there are only 15 on the schedule. Need to ask about that today.

    Did the run through with the x rays yesterday. That went just fine. I haven't been nervous but now I'm starting to feel it. Nothing to do but suck it up. It has to be done so let's do it.

  • 01ElCid
    01ElCid Member Posts: 2
    edited June 2019
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    Brand new to the site. I'm sorry all of you have to go through this but glad there is this forum as a resource and support.

    I had one radiation treatment June 19 but didn't officially start until yesterday, June 25. Today is my 3rd treatment.

    I'll be going 5 days a week for 4 weeks. 266 cgy.

    I have the treatment face down and on my left breast.

    I'm about a large B or small C and have silicone implants. I'm Mexican with a sort of medium complexion, not light and not dark.

    I would love to hear from people that had same amount of treatments, same side breast, face down with 266 cgy.

    Most curious about how it affected the skin and implants immediately and long term.

    What's the best way for me to find you?! : ) Is there a more appropriate thread?


  • Spoonie77
    Spoonie77 Member Posts: 532
    edited June 2019
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    Hi O1ELCid - I had treatment face up, with breath holds, and I do not have implants so there's very little I can offer in way of help specifically. I can say that everyone is different, so their journey with RADs will be different than yours. There is a thread here, Radiation After Silicone Implants, that may be helpful start for you. I'm sorry I'm not too familar with the SEs of RADs and implants, but there are many on the site here that have shared there experiences. Hopefully someone on that thread may be able to help your more than I can and direct you to other helpful threads as well. All I can do is wish you well and advise you to always speak up if/when you are experiencing any side effects (SEs). Hang in there. You're not alone. <3

  • mom2bunky
    mom2bunky Member Posts: 54
    edited June 2019
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    Well, the first treatment went smoothly. Glad to have that out of the way. I tell you these radiation technicians and nurses are a special kind of angel. They are so very kind and gentle and calming.

    I also met with my RO afterward and we had a long chat. I found myself suddenly depressed again as the first treatment grew nearer yesterday as well as afterward. She noticed it I think and asked me how I was feeling and I told her I was suddenly just so sad and a little pessimistic, WTF? She told me it's okay to have a pity party that I'm entitled once in awhile. But I said I thought I was over that. I'd had my pity party and my Angry as Hell party. She explained that having to lie down, exposed, and getting radiated just suddenly makes it all very, very real again. Right? I'd been plugging along for weeks, doing the right things, in control, feeling great (because I never felt ill), and kind of putting the cancer on the back burner a little bit. This brought it back to the forefront, which just sucks. Then she reminded me of all that is favorable in my diagnosis and how we're doing what we can to ensure it doesn't come back etc etc. It's almost over, blah blah. She really made me feel better.

    I'm mentioning the above in case anyone finds themselves feeling the same way. Let yourself feel it, then let it go. It's perfectly normal.

  • edj3
    edj3 Member Posts: 1,579
    edited June 2019
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    So true. I got really, really sad two weeks ago. I know I'm lucky (if anyone w/ a BC dx can be called lucky) because I have such an excellent prognosis and didn't have to have chemo.

    Still.

    My breast is kind of ugly now, and until May 6 both of them used to be so pretty. And I do NOT want to take tamoxifen and I'm tired of thinking about it and pondering this and feeling tired and run down from radiation, oh and having my skin look like I have the measles. Just tired of all of it.

  • mom2bunky
    mom2bunky Member Posts: 54
    edited June 2019
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    Exactly edj3. I could have written your post. Sick of all of it. Do you feel guilty for being angry, upset, and depressed when you know intellectually how lucky you are to have found it early and have such a good prognosis? I do. I immediately remember others who have it worse and I feel like a heel. But then I remember that I have cancer period. And it sucks, and I can be sad if I want and no guilt. But I have to tell myself no guilt.

    I used to have beautiful breasts too. The fed my son. They're important. Now not so pretty because they're all scarred up, but I'm sure that'll improve as scars do. Ugh, I am dreading what radiation will do to it. Trying to remember that it'll be temporary whatever it is, and hanging on like crazy to what the RO said that with my pale skin and not large breasts, I'll likely be fine. I'll cling to that. Funnily enough, I don't care about fatigue. I'll rest. It'll go away. Man I'm vain.

    I hope you recover quickly and beautifully. I think you're almost done yes?

  • edj3
    edj3 Member Posts: 1,579
    edited June 2019
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    Very nearly done, yes. Today and tomorrow and then I can heal up.

    And yes, I struggle with the "I should be grateful" stuff. I am grateful, and I'm also angry and sad.

  • mom2bunky
    mom2bunky Member Posts: 54
    edited June 2019
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    Yes exactly.

    Congrats on being almost done. I am 1 down 15 to go.