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Radiation June 2019

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13

Comments

  • Spoonie77
    Spoonie77 Member Posts: 532
    edited June 2019
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    Yep, you are very correct Mom2Bunky. RADs makes it all very real again. I could have written your post as well, back in Oct when I walked intot that RADs room for the first treatment. I was really hit with a wall of unexpected emotions. The room, the machine, the breath holds, it just was overwhelming. The next treatments were much better, emotionally speaking, but I think there is something about that very first one that just kind of kicks you in the gut and heart. Hang in there. We're here for you.


    EDJ3 - Good luck on your last 2 treatments! Woot! The finish line is almost here!

  • mountainmia
    mountainmia Member Posts: 857
    edited June 2019
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    edj3: "And yes, I struggle with the "I should be grateful" stuff. I am grateful, and I'm also angry and sad." YES. That's such a good way to put it. I don't feel a lot of either anger or sadness, but there are a lot of negative emotions that float in, sometimes settling for a time. Lots of positive ones, too, including gratitude. MIXED EMOTIONS. ALL the time. Another thing to accept.

    I'm lined up for rads to start in July so have been following here to see what's coming. I was interested in the overview of costs for rads tx. I just added up my costs of care so far this year, the ones processed so far in EOB. I have an expensive, high-deductible, high out-of-pocket policy that has covered stuff without involving me. The "charged" costs from the hospital, including screening mammo, diagnostic and biopsy, lumpectomy, and one chemo, adds up to $98k. Insurance has actually paid about $26k. I've paid $3500. The "lucky" part, I guess, is my diagnosis was early in the year, and my main care should be done in August. Even so, with rads, the total charged might be in the range of $250,000.

  • edj3
    edj3 Member Posts: 1,579
    edited June 2019
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    MountainMia my insurance initially denied the claims for my biopsy which about gave me heart failure. I mean, I was pretty sure they'd cover it in the end but the stress of seeing a $15k bill assigned as my responsibility was a lot to take.

    My blood pressure has always been quite low, and while that was going on it was coming it at so called normal levels. I told my care team, look no that's not normal for me. That's HIGH, I am super stressed right now. Don't know that they believed me.

  • missouricatlady
    missouricatlady Member Posts: 894
    edited June 2019
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    Just wanted to share something someone shared with me in the infusion room yesterday that I had not heard about for burns, Boudreaux's Butt Paste (in the baby section). I am on treatment #19 today, and she told me to try this if the burns start, which I assume they are going to as I get down to that final #33. Hope everyone is doing well, happy Friday! Lisa

  • edj3
    edj3 Member Posts: 1,579
    edited June 2019
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    MissouriCatLady I feel for you with a scheduled treatment of 33 sessions. My skin's done ok so far with number 20 being today. I don't know that it would hold out for another 13. I've been using Miaderm, others recommended it so I ordered it through Amazon. It's definitely helped but it wasn't cheap. Bet the butt cream is less pricey and if it works, halleluja!

  • mom2bunky
    mom2bunky Member Posts: 54
    edited June 2019
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    "Mixed emotions" is it for sure. I felt a lot better during the second rad treatment. I think I am once again "pushing through" as the RO described it.

    I'm using calendula cream. Recommended by RO and a few people here. I've been putting it on even though after two treatments obviously nothing is happening to my skin. Am I supposed to wait until it starts changing?


    I'm also having this sort of weird thought process where it's kind of hard to believe that anything is really happening. The machine moves, but it's almost silent. My breast is fine. Is it really doing anything? Very silly.

    2 down, 14 to go.

  • edj3
    edj3 Member Posts: 1,579
    edited June 2019
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    mom2bunky I felt much the same way, although since the cancer is in the left breast, I had to do the deep inspiration breath hold to help get my lungs and heart out of harm's way.

    It's even more that way for me with the boosts. I don't have to hold my breath, it's one zap, not two so it's over even faster.

    What I'm looking forward to:

    • Washing off ALL the Sharpie marks for good
    • Using deodorant on the left side--I haven't since May 6.
  • Spoonie77
    Spoonie77 Member Posts: 532
    edited June 2019
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    Mom2Bunky - I was advised by my RO to start using the creams once a day PRIOR to RADs in preparation. Once treatment started I was to apply at least 2 times daily (at least AM & PM), up to 4 depending on symptom severity. Nothing applied prior to 4 hours before a session though. Calendula, AloeVesta, and Miaderm were the creams I was using. Honestly I can't imagine what my skin WOULD have looked like at the end if I hadn't followed their instructions. It was bad enough as it was, and my nipple, even 6 months out is still recovering. Wishing you minimum SEs!

  • edj3
    edj3 Member Posts: 1,579
    edited June 2019
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    I started with the Miaderm before my skin got mad. And I'm with Spoonie, my nipple is not pleased with me.

  • Spoonie77
    Spoonie77 Member Posts: 532
    edited June 2019
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    EDJ3 - I could be wrong, but from what my RO explained to me prior to my LX when discussing possible treatment options, as it was first thought I would need 33 treatment plus supraclavicular nodes included. The strength of the Greys would be different if I needed 33 treatments vs 20. I could be wrong though. That was just my understanding and for my particular case. In any case, 33 sessions is a rough journey no matter the dosage IMO. MissouriCatLady I am wishing you the best and smoothest sailing during your treatments. <3

  • missouricatlady
    missouricatlady Member Posts: 894
    edited June 2019
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    Thank you, Spoonie!

    I wanted to share this link, in case any newbies come by: https://www.mskcc.org/cancer-care/patient-education/radiation-therapy-breast-chest-wall It would have helped me to know some of these things, just very informative on the process of what happens. Best wishes to everyone!

  • Spoonie77
    Spoonie77 Member Posts: 532
    edited June 2019
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    You're right, that sure is a GOOD link to have handy! Bookmarked so I may pass it on to others in the furture. Thanks for sharing MissouriCatLady! :)

  • mom2bunky
    mom2bunky Member Posts: 54
    edited July 2019
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    Hi everyone and happy July,

    So far so good, though I think I may be starting to get pink. It's hard to tell. I may be imagining things. Yesterday I had what they called my "regular weekly x-ray." Excuse me? What x-ray. They explained. Um, okay. My first thought was seriously? It's not bad enough that now I'm getting weekly x-rays in that area? Then I realized, yeah the radiation is far stronger than any x-ray so just chill. Yet another moment where a once perfectly normal thought process no longer "fits" in the new normal. Ugh.

    5 down, 11 to go.

    Oh I started using aloe vera as well as the calendula. very refreshing! So far my treatments have all been late in the day so I can't do the frequent applications because they want nothing on the breast at the time of treatment. Tomorrow they're switching me to mornings, so that should allow me to slather throughout the day as so many of you seem to be doing.

    I should mention that I use the Dove soap to shower, then my regular body lotion everywhere including the breasts, THEN the calendula.

  • edj3
    edj3 Member Posts: 1,579
    edited July 2019
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    Finished all the radiation last Friday, and yes this is the gift that continues to give. You can clearly see the demarcation on my upper breast between non-radiated skin and radiated skin. For me, the discomfort continues to be my nipple, incision site (which basically IS my nipple) and my sentinel lymph node incision. My skin is doing OK, still looks like a bad rash, definitely browner but no blisters or anything like that.

    At my RO's direction, I'm using the Miraderm 2 to 3 times a day. I've stopped w/ deodorant in the left armpit, the skin is still too irritated. But the cornstarch helps with feeling a bit sticky, so that's good.

  • Spoonie77
    Spoonie77 Member Posts: 532
    edited July 2019
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    Congrats on finishing up EDj3! Wooooooot!!!! Bet it feels wonderful to not have to go to treatment daily now. I was over the moon for the first week at just having my afternoons back to myself! :)

    I hope your skin and nipple starts to heal soon. It does take different times for everyone. You seem very healthy and active so I'm betting your skin will marshal itself and put things right in a month or so. I'm 8 months out and my L radiated areas are still tan while the rest of me is white. Oh well, my Rehab dr says it's like having a unique tattoo!

    Wishing you a smooth recovery. I know it helped my skin to keep moisturizing for the next 3-4 months at least once a day. Not with Miaderm, just with my normal Nivea moisturizer.

  • edj3
    edj3 Member Posts: 1,579
    edited July 2019
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    :) Thank you, Spoonie!

    Once the Miaderm is gone, I won't buy more--good ol Lubriderm will be just fine, I'm sure!

  • Spoonie77
    Spoonie77 Member Posts: 532
    edited July 2019
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    Oh yes, definitely. That Miaderm was spendy but I know it did help me tremendously. My SO did advise me to keep using something with vitamin E or coconut oil after RADs discharged me but I tried them and ended up getting a rash <face palm> ON TOP of my RADs rash so switched back to my Nivea and no problems followed. When I saw with her 6 months later she was impressed at how things looked given how "bad" things had been. So whatever works for your body sounds good IMO! :)

  • brooklynmama75
    brooklynmama75 Member Posts: 4
    edited July 2019
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    Congrats edj3 on finishing! I finish today- can’t wait to ring that bell! My skin has fared ok. Some discoloration but no real redness or itching. My nipple is also really raw and sore and the side of my ribcage hurts. They gave me calendula ointment (not just the cream) and also prescribed a steroid cream, which has helped. They also gave me those hydrogel pads which are soothing. I never really had any fatigue- at least no more than normal (I have a 5 year old som who wears me out!)

    I am really nervous now to move onto the tamoxifen. I feel like the side effects are going to be difficult to manage especially knowing that I have to be on it for 10 years.

    Sending healing thoughts to those still in the thick of radiation!


  • mom2bunky
    mom2bunky Member Posts: 54
    edited July 2019
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    Congrats edj3 and Brroklynmam on being finished!

    I am officially pink now. But it's very faint for the moment. 7 down, 9 to go.

  • GiddyupGirl
    GiddyupGirl Member Posts: 196
    edited July 2019
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    Hi Mom2bunky (love your handle) I am new to this - did my first rad treatment on Tuesday this week (Iam now four down) and the first day I was so sad. Like you I have been trucking along with surgery over I just put the whole bc on the back burner. But Tuesday it just became the major focus for my summer (I have 25 plus 5 boosts). Can't quite shake that blue feeling. My breasts used to be pretty and now one is scarred and ugly. Hard to get used to. Everybody here seems so together, Hopefully I'll catch up. Any advice is always welcome. To all of you be well.

  • edj3
    edj3 Member Posts: 1,579
    edited July 2019
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    Oh sweetie, right there with you. And then I do feel guilty and shallow for mourning the way my left breast used to look. It's not the same now and it never will be again. That's just a fact. I'm working hard to be OK with feeling sad, but I've also reached out to my care team at the breast center and I'll be seeing a psych in a couple of weeks. I've got a lot of anger about this and sorrow too. Normal, yes, but I would far prefer to be back to my normal mental state, which generally does NOT include this anger and grief.

  • missouricatlady
    missouricatlady Member Posts: 894
    edited July 2019
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    Hi ladies. I am 2/3 of the way done, 10 treatments left, last 5 are boosts, and skin is holding up "better than most," according to my doctor. I use generic Aveeno in the morning and before bed, and Calendula after treatment. I just wanted to send you a hug, GiddyupGirl, and edj3, hugs to anyone who needs one. My son, who lives 2000 miles away, gets a lot of good therapy from his therapist, and I would encourage this to anyone who is struggling. Hugs to you, Lisa

  • 01ElCid
    01ElCid Member Posts: 2
    edited July 2019
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    Thank you Spoonie !

  • mom2bunky
    mom2bunky Member Posts: 54
    edited July 2019
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    I hear you giddyup girl. I'm okay about the sad part now. The anger, I don't know. It's not like I"m always feeling it, but it does still rear it's ugly head from time to time. The having to be on hormone blockers for years really seems to piss me off these days. And I've not even started them yet.

    I had a long weekend break from rads. My skin was just starting to get tan, and now it's back to normal again. I'll have five in a row this week so we'll see what happens. After today's I'll be exactly halfway through.

  • GiddyupGirl
    GiddyupGirl Member Posts: 196
    edited July 2019
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    mom2bunky congrats on being halfway through. I mostly get angry that this stupid rude intrusive disease is messing with my schedule. Today was only treatment 5 and for a couple of hours after tx my boob feels like its on fire (left side) so my husband has to drive me. He's a good guy but on third day instead of waiting in the normal place he got confused and waited somewhere else with his cell phone off. I waited and looked everywhere for him, had two volunteers looking for him -- took half hour to find him and wow he got most of my anger. I could whine for pages about the sun (I have horses so am outside alot usually) and its not comfy and on and on but this too shall pass. Like you the hormone blockers piss me off I kinda liked my hormones. Hope the last half of your rads leaves your skin baby bottom smooth. Sorry for the long rant but I figured you would understand the frustration. Stay well.

  • mom2bunky
    mom2bunky Member Posts: 54
    edited July 2019
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    oh I understand all right. Sometimes, I find myself angry at my husband and I realize no, that’s not it. I’m just pissed and it has nothing to do with him.

    Sigh. Glad to have this place to spew and sisters in crime who really get it

  • edj3
    edj3 Member Posts: 1,579
    edited July 2019
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    *raises hand* me, me, me! I get it! I'm SUPER pissed that I even need to consider hormone blockers.

  • phlchick
    phlchick Member Posts: 2
    edited July 2019
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    Finished today after 26 treatments. So tired but so happy to be done.

  • mom2bunky
    mom2bunky Member Posts: 54
    edited July 2019
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    Fantastic phlchick! Congratulations. You've earned some rest.

    All good here. 10 down, 6 to go. Skin is doing very well. My nipple has darkened a little, that's it. Waiting for the other shoe to drop, but hopeful it won't.

  • GiddyupGirl
    GiddyupGirl Member Posts: 196
    edited July 2019
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    Congratulations phichick you did it. Take a nap and then do something fun.

    Mom2Bunky - you are almost there. As long as the other shoe doesn't drop on your boob you'll do great.