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Starting Radiation October 2021

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  • Esther01
    Esther01 Member Posts: 229
    edited October 2021
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    Hi everyone,

    NatureYogi, congratulations on having your first day behind you!! That is awesome.

    Maryoe, I hope your simulation goes well. Make sure they help you get into the most comfortable position possible since you'll be in that same position throughout.

    Aklynna, I felt the same way. This whole part of our treatment takes a mental toll on us because all our lives we run away from radiation damage, and now we're instructed to lie down and deliberately radiate ourselves. My brain had a hard time with that and wanted to run away! But, thanks to loving support here, from my rad techs, and from my family and friends, I got through the 35 treatments and just celebrated being done. I never had any fatigue at all. I think that might be because I did not have chemo right before (or at all). I also drank a lot of water and exercised every day even when I truly felt like skipping it.

    My cording and ROM is getting better which is a relief. For what it's worth, while my breast and back (since the rad beams come out there) got REALLY reddish tan, I only briefly had a bit of nipple sensitivity and of course some itching like others have mentioned. But my skin never broke, peeled, or blistered. I am one week out and it's not even peeling, it's just tan which is fading each day. I mention all that because everybody responds differently (and as I was laughingly mentioning earlier, I think my once weekly shower might have actually helped).

    Speaking of lotioning, I was careful not to lotion within 3 hours of getting rads, but my RO surprised me by saying that admonition is an old wives' tale and that I didn't have to forego lotioning before radiation. Well, that message didn't get to his rad techs, who repeated what I have always heard - that you should NOT lotion within 3 hours of treatment. So even though the RO had assured me it was fine, I played it safe and never did. The calendula cream would get pretty well absorbed so I could apply it three times a day and it never got greasy. I tried aquafor only once.

    Anyway, hope that helps. I am thinking of you gals who are just starting. You'll get through this! I hope your commutes will not be too bad. When we do something difficult like this together, it is so much more bearable and manageable and for that I am so grateful.

    Much love,

    Esther

  • Esther01
    Esther01 Member Posts: 229
    edited October 2021
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    And Hi, Serendipity! :)

    Sleep well, everyone-

    Love,

    Esther

  • grandmaadams
    grandmaadams Member Posts: 39
    edited October 2021
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    Hi ladies ... I'm finished with rads but I have a tip for those with sharpie marks and clear stickers. I was careful with them and they stayed on amazingly well even with daily showers. I did have one that the edge started to peel off. I clipped off the sticky end of a band-aid and used it to hold the sticker in place until my next treatment. The techs just peeled it off and replaced the sticker with a new one. It's not the stickers you need to worry about, it's washing off the marker. Good luck to all.

  • wondering44
    wondering44 Member Posts: 261
    edited October 2021
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    Planted a couple of barrels of these today in recognition of Breast Cancer Awareness Month. Sharing with all of you starting radiation this month. I hope all of you healed from your surgeries and lots of warm thoughts going your way on your next step in your treatment plans. Wishing you guys all the best in radiation treatment.

    image

  • NatureYogi
    NatureYogi Member Posts: 135
    edited October 2021
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    Thank you Wondering44! I'm 2 treatments down, going well so far. Glad the weekend is here to have a break before I go through the next 5 days.

    LW44-It helps having a schedule that you will be happy with. I think we all get tired from going back and forth to treatments and appointments.

    Grandmaadam-Great tip, thank you! My top sticker seems to come loose often, I'll try the band aid.

    Ester01-Thank you for your continued support!

    I hope everyone has a relaxing weekend! Happy Fall!




  • FloridaTBone
    FloridaTBone Member Posts: 2
    edited October 2021
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    Hi Everyone! NatureYogi, thanks for starting this. Like you, my first day of radiation was 9/30, but I thought this was the place to be since most of mine will be in October. So far so good, although 'right boob' [not to offend anyone--I refer to my breast that way!] feels weird. I've had discomfort since my fourth biopsy in June (to explore another suspicious area before surgery)--it is tolerable, but 'twingie'. Hope it eventually goes away. I was shocked at how short the rad appointments are--the simulation was definitely longer. Anyway, 2 down, 18 more to go! Wishing you all a healing and restful weekend!

  • serendipity09
    serendipity09 Member Posts: 769
    edited October 2021
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    FloridaTBone - sorry that you are here, but welcome! Hoping that all goes well for you and that the 8 goes quickly for you.

    I feel the same way; it takes me longer to drive to my appointments than the actual appointment.

  • lw422
    lw422 Member Posts: 1,409
    edited October 2021
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    Hello everyone! Sounds like we are "off and running" for our October treatments. My first one is tomorrow and I'm feeling a little anxious but ready to get started (and finished) with it.

    Wandering44--thanks for the pretty petunias!

    FloridaTBone--welcome. I hope your treatment goes well.

    Serendipity--I hope you're feeling better. You are in the home stretch now!

    I hope everyone has a good week.

  • serendipity09
    serendipity09 Member Posts: 769
    edited October 2021
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    LW- I'll be thinking about you and sending positive vibes. I say a prayer for all of us everyday I'm in the machine. I am in the final stretch, but will be here for you all until your done!

    Happy Sunday evening to you all!

  • Aklynna
    Aklynna Member Posts: 28
    edited October 2021
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    LW- good luck today!!

    Serendipity- congrats on being in the final stretch! Thank you for your support and advice on my dilemma. I really think I’m just going to decline. I don’t know that I will mentally or physically be in a good place to deal with a wedding.

  • lw422
    lw422 Member Posts: 1,409
    edited October 2021
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    Hey y'all. Well, day 1 is in the history books. I had an emo moment when I got on the table and got all teary-eyed. I guess the rad techs are used to it; they were very kind. Now that I have a better understanding of how it's going to go it should be easier tomorrow.

    Today I am 6 weeks out from my mastectomy, so in 6 more weeks I'll be done with rads! (How time flies when we're having 'fun'!!!)

    I hope everyone is doing well; have a great week.

  • serendipity09
    serendipity09 Member Posts: 769
    edited October 2021
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    Aklynna - it's not easy! I know, my niece is getting married on the Saturday after my last treatment and I had to decline because I didn't know how I was going to feel. Given how I feel now, I'm glad I did. Like I told you, it's all tolerable, but you just never know how you'll react and what you'll be feeling. {Hugs}

    LW - yay for being done with day one.You'll see how fast it goes. I had a complete meltdown at my simulation and became very emotional on day one. The hardest part is over. Based on the experiences shared here, you already know (kind of) what to expect as far as SE's goes. I hope that helps you and everyone else a little bit. It's the unknown that is scary, but as mentioned before, chemo was so much worser than this, for me at least.

    We got this!!

  • Aklynna
    Aklynna Member Posts: 28
    edited October 2021
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    LW - glad to hear you made it thru day 1. I’m sure I’m going to be exactly the same…sometime it’s the fear of the unknown that’s the worst part.

    Wondering- love the barrel ‘o flowers

  • NatureYogi
    NatureYogi Member Posts: 135
    edited October 2021
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    LW422-Congrats on making it through your first treatment! While getting my treatment today, a lady was ringing the bell for her last day of treatment, I've got 27 to go. I think I'll be tired of just having to go over there everyday....but we've got this!

  • Rubytoos
    Rubytoos Member Posts: 44
    edited October 2021
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    Had my first of 15 treatments today. My chest (PMRT) is hot enough to incubate chicks I think... I have asked repeatedly about self care and gotten no where. If it weren't for this board I would be completely unprepared. I had clear nodes and no residual cancer in my breast, and an Oncotype of 6 plus its left sided so worried about heart and lung involvement. But the RO insists on treating the chest wall and the axillary nodes as this is a local recurrence (I had no treatment the last time beyond a lumpectomy due to the seemingly indolent nature of my cancer). So in for a penny, in for a pound. One thing I was not prepared for was the "bolus" aspect. They placed a wet cloth on my chest to intensify the effects of the radiation to my skin which may account for how warm it is. I am thinking about putting a cold pack on the area but maybe not such a great idea. I worried so much about other things--the biopsies, seed placements, sentinel node dye injection, and the surgeries themselves--and they were all a breeze. Hoping this falls into the same category as I am a ways from home and flying solo

  • serendipity09
    serendipity09 Member Posts: 769
    edited October 2021
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    Hi Rubytoos! So sorry you find yourself here, but welcome!

    I was instructed from the beginning not to put any cold compresses on the radiated area, don't remember why. But one piece of advice given to me by my RO's nurse was to put my cream in the refrigerator. It does give me a little relief momentarily and feels really good when being applied.

    I agree with you that the other procedures, other than chemo for me, was much easier than this.

    Hoping that these next 14 treatments go fast for you.

    Ivy

  • Rubytoos
    Rubytoos Member Posts: 44
    edited October 2021
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    Oh wow! Thank you Serendipity! What a great idea! And actually I am glad to be here. This board is a great resource. If someone is dealing with bc no better place to be IMHO. Thanks for the welcome :)

  • lw422
    lw422 Member Posts: 1,409
    edited October 2021
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    Hi Rubytoos! Jeeze, I can't believe you're having that burning feeling already. I hope today goes better for you and that the SEs will ease off.

    Hope everyone is having a good week. I think I'm getting the "rhythm" of the process with my team; I didn't stumble around like a dufus today. Seems to me that they "assume" that we will instinctively know what to do but sorry... I need explicit instruction!!

    Does anyone else have pangs of wondering if the techs are paying attention and know what they are doing? I see that huge machine hanging over me and almost panic wondering if a human error will cause me endless grief someday, or if those squiggly lines they draw on me are acurate. :shocked: Yeah, I'm a worst-case type, lol.)

    Hang in there, everyone!

  • serendipity09
    serendipity09 Member Posts: 769
    edited October 2021
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    LW - I asked them today if they ever forget to tell anyone when to breath again. Of course they said they haven't, but I still wonder. I guess it goes along with your question. I hold my breath until they tell me to breath, but as I lay in the machine this morning I had that thought pop into my head. Obviously, if I need to breath I'm going to breath and the machine knows to stop, sometimes it can feel like an eternity. I hadn't had any of those thoughts because it was explained to me in such detail that I felt safe enough in knowing that the machine knows better. Now you have me wondering...lol

  • NatureYogi
    NatureYogi Member Posts: 135
    edited October 2021
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    Today it seemed like I was holding my breath longer, I had the same thoughts, wondering if the machine would stop if I started breathing again! 26 more treatments to go!

    Hope everyone is doing ok



  • Aklynna
    Aklynna Member Posts: 28
    edited October 2021
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    Evenin’ ladies!

    Had my simulation today and I was a nervous wreck! Thankfully the radiation tech was a saint and put up with my anxious/not so nice behavior. After she did her part and I met with the nurse for “education”, she came back to get me and took me over to the actual treatment room. Showed me the big scary machine, how everything moved around, where the beams would enter and exit my body, etc. She was amazing! And she was able to work out a schedule that should be manageable with my work schedule.

    That is one of biggest challenges…notputting myself 1st. I know that I am 100% replaceable at work, but my type A personality can’t just walk away and let someone else handle things. My appointments are at 3:15 or 3:30 everyday so I will only be missing about an hour or so of work.

    The nurse was adamant about using Aquaphor and nothing else. If I try it and don’t like it then they will look at other options. Other things that surprised me a bit were NO underwire bras and NO shaving my armpit except with an electric razor.

    And, to top it all off I found out today that I am officially post-menopausal! At 43, and not really having any symptoms I was shocked. I don’t know if my period has stopped since I’ve been on the mini-pill birth control for just over a year. But blood tests confirmed it!

    Hope everyone had an easy day and has a restful night’s sleep! Hug

  • serendipity09
    serendipity09 Member Posts: 769
    edited October 2021
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    Aklynna - I'm happy you got through simulation.

    I'm surprised, kind of shocked that they didn't give you a radiation burn cream in addition to Aquaphor. My RO gave me both. I don't use the Aquaphor, I don't like it and it doesn't help me with the burn. The burn cream helps soothe and calms my inflamed skin.

    I was instructed not to shave either as they didn't want any irritation/cuts, then I was told I could shave, but haven't had to since the rads has stopped the hair growth.

    It's not easy putting yourself first, but you really should make an effort to do it. It will help you get through treatment and heal along the way. I learned the hard way.

    My best to you all today.

  • lw422
    lw422 Member Posts: 1,409
    edited October 2021
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    NatureYogi--I had a couple of longer breath holds today, too! One was really long (or so it seemed) and I was worried I couldn't hold out for the entire time, but I did. I wish they'd warn me when the longer ones are coming so I could prepare.

    Aklynna--glad your simulation went well. Do you have your start date yet? Wow, menopause at 43 is a shock; I'm pretty sure the medication you took had something to do with that.

    Serendipity--how are you holding up? I know you are getting close to the end so hang on, girl. I had my first bolus today; I get them every other day for 2 weeks. Yikes.

    My team hasn't said anything at all to me about lotions or creams but I see the RO tomorrow. I've been putting a moisturizer on the area but it's really hard to avoid all the stickers and markings... good grief. It doesn't seem like I have much area left to apply cream with all that going on.

    I hope everyone has a great week. All of you in treatment check in and let us know how you're doing.

  • serendipity09
    serendipity09 Member Posts: 769
    edited October 2021
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    LW - they'll probably be giving you the cream tomorrow. They give me Miaderm Radiation Relief from the beginning. It was explained to me today that the Aquaphor should be used in the armpit and on the areas that are peeling, so right now that is under my boob.

    What is bolus? Isn't that the mold they put on the area that is being radiated? Or is it something else?

    I'm hanging in there. I'm exhausted and my skin is on fire! No breaking of the skin or blisters and praying it stays that way. My skin is "prickly" though. 3 more to go! We'll get though this. And I'm with you guys til the end, if you'll have me.

    Chemo caused me to go into menopause last year and it's awful! The hot flashes are insane. It went away for a while back in March, but came back full force right after my exchange surgery in July. UGH!! I said this in the August thread, I swear I go from 0 to hell in 1.5 seconds, lol. I hate them! The last few days have been really bad, I've gotten so frustrated with them that I've actually started crying.

    Will check in with you a bit later!!


  • lw422
    lw422 Member Posts: 1,409
    edited October 2021
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    Serendipity--all I know is the bolus is some type of material that they placed on me to control the depth of the radiation. I have Inflammatory Breast Cancer (IBC) which presents in the skin (which is why it is never less than Stage 3), so they are focusing on the skin around where my cancerous breast was removed. Since I didn't know they were going to do it and I was unable to turn my head (or MOVE) during the treatment I didn't get a look at it, but I'm going to ask to see it tomorrow. I have read that it causes an increase in radiation dermatitis (oh goody).

    Sorry that you suffer with menopause symptoms. I went through natural menopause at 50 and it was easy for me; I never had many effects from it at all and was glad to never have another period!! I think this whole breast cancer thing is such a shit-show (sorry if offensive); I have cried more in the last 9 months than in my entire life before.

    It's really sweet of you to hang with us until we're all done. We all need to encourage each other; it's easier to go through this crap with some sympathetic friends who understand. I hope your skin doesn't get any worse and will feel better soon.


  • NatureYogi
    NatureYogi Member Posts: 135
    edited October 2021
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    I'm getting the Bolus also, I've had 5 treatments so far, and every one they used Bolus.

    Serendipity-Your skin sounds painful, sorry you are going through this.

    Everyone hang in there!


  • Lisa_RN314
    Lisa_RN314 Member Posts: 3
    edited October 2021
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    Hello everyone,

    I recently joined and this is my first time posting and I just want to say how much I appreciate all the great information on here! Starting radiation tomorrow….25 treatments to lymph nodes and chest wall. Did a run through today, feeling extremely anxious for my first treatment tomorrow.

  • serendipity09
    serendipity09 Member Posts: 769
    edited October 2021
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    Lisa - sorry you had to join the club, but welcome! I hope everything goes well for you tomorrow; all of this is so overwhelming, but it does get better, for a lack of another word. We're here for you!!

    Nature - the RO said it was normal, so as long as it's not anything bad I'll deal with it. He told me that it will "peak" a bout a week after my last session...great! It's like they say "we have to get worse before we get better." :/

    LW - The August group have stayed with me, I'll do the same for you all! <3

    Have a goodnight!!

  • pchyen
    pchyen Member Posts: 96
    edited October 2021
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    Hi everyone, joining October radiation thread.I see some familiar names and some soon to be familiar names.

    My wife Nicole has CT simulation tomorrow andwill start radiation either next week or the week after. 15 sessions and will have bolus every other session due to IBC and skin involvement. No radiation to auxiliary area to reduce lymphedema but will have radiation to chest wall, internal mammary chain, and supraclavicular fossa. Was told the dosage will be more of a medium dosage instead of lighter dosagefor 20-25 rounds.

    Going to gather some stuff to help with keeping the skin moisturized.

  • lw422
    lw422 Member Posts: 1,409
    edited October 2021
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    Hi Lisa and welcome. Let us know how your treatment goes tomorrow; I'll be thinking of you. We can do this!

    Hey Peter!! Nice to "see" you and I hope Nicole's radiation treatment goes well. I have some concerns about how radiation might affect the lymphovenous bypass and neither the surgeon nor the radiologist could tell me. I guess the procedure is fairly new so they just hope for the best without much data. Let us know when Nicole gets started with rads and I hope she is feeling well after surgery.