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Starting Radiation February 2020

135

Comments

  • rhodygirl55
    rhodygirl55 Member Posts: 30

    Hi all,

    Checking in after 18/25 sessions.

    Congratulations on LMS on completion! Let us know how you're doing over the next couple of weeks so we know that it gets better and back to normal :)

    And congratulations to you too Moxie on not needing chemo, the low score was a huge relief for me too.

    Marinochka, I use Calendula cream the brand is Boiron and it's a favorite of my RO, you can get it on Amazon. They told me not to use anything until the day of starting treatments, but I used extra moisturizer for a week before.

    I wish I had a different experience, but my fatigue is real, and so is yours, AZNative! My RO told me to stop working from the fatigue, because I need to heal every night after rads. The first morning I didn't set my alarm Islept in for 12 1/2 hours!

    I also have a pretty good burn in between my 'breasts', on my clavicle and also on my back where it exits. Layering hydrocortisone, calendula and aquaphor as often as needed which helps with the itching.

    Hope everyone is having a good week and looking forward to the weekend off!

    Stay strong!

  • moxie32
    moxie32 Member Posts: 51

    RhodyGirl - Hang in there

  • lms458412
    lms458412 Member Posts: 289

    I will definitely continue to check in.

    I'm 5 days past my final treatment. The weird sensations are gone. My skin is still sort of pinkish tan and is really peeling a lot. I still feel tired, but it's not the overwhelming fatigue I felt several times during treatment.

    I'll check in again in a few days. Stay strong ladies! You can get through this.

  • TeriJ
    TeriJ Member Posts: 44

    Hello everyone!

    After catching up on the feed I have a few tips to offer.
    I used Jason's aloe lotion for my rads. 2-4x/day. It created a nice protective covering, if you will, that’ didn’t sweat off or rub off nor soak in. I applied morning, right after treatment, and before bed. And Never less than 2 hrs prior to treatment. I finished on 2/21 and am still dealing with a rash and terrible itching which I control with sort of cortisone cream and mental willpowe. I increased my water intake to stay hydrated. All per my RO instruction. Fatigue hit around week 3, but I took it easy starting middle of week 2.
    Remember, we all came into this with different circumstances so the ways we react to treatment will all be different.

    Moxie: my insurance fought covering the Oncotype test also. I think my portion is going to be over $700 ! Yikes!! I didn't ask about coverage I just wanted to know if I needed chemo!! It's all such a whirlwind of tests and waiting but why do we have to worry about insurance coverage for these lab tests that cost thousands of dollars?! So frustrating! Also, when I started radiation I followed a group that was a mo th ahead of me. They all had experienced what I was about to go through and had a lot of great advice. Just a suggestion.

    Good luck everyone

  • moxie32
    moxie32 Member Posts: 51

    TeriJ: Thanks! I’m still following this group for exactly your reasons. Thank you for the tips!

    I had to get preauthorized for the Oncotype or I don’t think they would have covered any of it. I saw the EOB the other day and they didn’t allow the whole cost (most of it) but I can never tell what that means as far as what I’ll get billed

    I actually just paid for my own “good side” mammo bc of timing with radiation and getting on a normal schedule for bilateral diagnostic mammos.

  • AZNative2020
    AZNative2020 Member Posts: 18

    Day 13 of 30 today. I'm doing OK. My skin looks fine. I do have some bumps under my breast that my RO actually blamed on radiation. Other than that, I'm ok. The fatigue was less than last week, but I overdid it yesterday and was exhausted last night. I am slathering Aloe on right after treatment followed by Calendula gel then I use Aquaphor at night. I started to juice two weeks ago and drink over a gallon of water a day, walk over 2 miles and do lots of stretching. I'm hoping that stays helpful. My RO said my skin looked really good.

    How's everyone else holding up?

  • Rosie24
    Rosie24 Member Posts: 1,026

    Today was 13/25, crossed the halfway point today. I have a redness and a rash on my clavicle area, RO said it’s common for those who get rads there, suggested hydrocortisone first, then regular moisturizer. It seems to be helping. I also have some painful swallowing on and off. It feels like I’m trying to swallow something sharp. Doc warned me about that too but I hadn’t experienced it yet when I last saw her. Said everything will resolve after treatment ends. Oh the joys of radiation!? 😳

  • birdsndognow
    birdsndognow Member Posts: 16

    Hi Rosie, and everyone.

    Rosie you said -

    It feels like I'm trying to swallow something sharp. Doc warned me about that too..(snip)

    I wonder if that's why my voice has been going out on me. It's happened three times.

    Just like laryngitis, but my throat doesn't hurt, and it doesn't last long. I'll have to ask about

    that, or look at the reams of info in that file folder they gave to me to see if it's a side effect.

    Got red itchy bumps various places, and a little pulling pain in the armpit and upper arm.

    A couple of times, I got very fatigued, abandoned making dinner, the laundry, walking the

    dog, and slept for 12 hours.

    Hurry up, March 25th!!!! :-))

  • jhl
    jhl Member Posts: 175

    I shouldn't really complain because so many of you have many more appointments than I have. I just completed 9 out of 16 sessions. I have been so very very tired. I also have developed a very deep ache in my radiated breast. My skin is still good. I only have a bit of itching but that could be from my Arimidex also. Does anyone else have this deep ache? Thanks & good luck to everyone.

  • Rosie24
    Rosie24 Member Posts: 1,026

    Birdsanddog,

    I just started thinking it feels like strep or tonsillitis. I don’t feel sick other wise, but will run it by my RO tomorrow.

  • AZNative2020
    AZNative2020 Member Posts: 18

    Hi jhl, My MO told me to discontinue my Anastrozole (Arimidex) during rads.It's so interesting to me how oncologists are so different with the recommendations. My PS has me on Singulair to help with effects of rads on my implants.

    My aches come and go kind of like waves. I am having a deep ache near my armpit and again on the inside of my radiated side. (My tumor was on the outside) I did go straight to implants with my DMX, so I have nerve pangs as well. Wish I was having only 16 treatments- lucky you. Or on you on the accelerated plan with the same amount of rads over half the time?

    Wishing you well.

  • Rosie24
    Rosie24 Member Posts: 1,026

    Just a follow up to my throat & swallowing issue: RO said it’s not unusual when being treated near the neck, as in supraclavicular nodes for me. She said there’s a lidocaine type prescription if I feel it’s not tolerable or I can use a home remedy of maalox/benedryl equal parts, small amount. She said more often people feel like they have a lump in their throat.

    And about fatigue, yes for me.

  • tinkerbell107
    tinkerbell107 Member Posts: 293

    Just wanted to drop in and see how folks are doing.... Rosie, Gosh, hope your swallowing/throat issue resolves. I wasn't anticipating this side effect. I'll give myself some extra lotion tonight but not sure if that helps out with the supraclavicular node area.

    Wishing everyone well, support and hugs...

  • Rosie24
    Rosie24 Member Posts: 1,026

    Tinkerbell, Do you have a start date? Or maybe you’ve started already?

    I don't think that throat problem is a common thing. But redness on the clavicle is common, they told me. I know I've had more sun there over my life than any other place receiving rads, which is what the nurse told me is their thinking as to why. My breast area and underarm are holding up well.

    My RO and nurse are very generous with the moisturizers. Today I left with four tubes, two each of two kinds. I do like Miaderm which I got on Amazon (pricy but great recommendations) because it's more lotion like but I'm going to try another one that I just got too.

    I hope everyone is doing well or hanging in there, and of course, counting down. 14/25 done for me.

  • violadoc
    violadoc Member Posts: 1

    Newbie here, just joined yesterday. I’m so glad I found this forum!

    I feel fortunate in that I was able to do an abbreviated partial (stereotactic) radiation therapy of only 5 treatments from 2/3 - 2/12. But - I feel exhausted! I’m achy, tired, and nauseous (at times). I’m sure some of it is having trouble sleeping due to hot flashes from going off the hormones, but it seems like more than just that. Based on what the RO said I would have expected to start feeling more energetic by now. Anyone know if this is normal? And if so, when can I finally expect to get my energy back

  • tinkerbell107
    tinkerbell107 Member Posts: 293

    hi Rosie: My start date is 3/9/20. So I’ve been lubing all week. Just wondering how folks are managing work. I work 10 hr days. So this should be interesting. I have FMLA approved for work. So I guess I’ll have to judge one day at a time. Fortunately I don’t have a physically demanding job. More mental lol.

  • rhodygirl55
    rhodygirl55 Member Posts: 30

    Hi there,

    Checking in after 23 of 25 sessions. They gave me today off to give my skin a rest over a 3 day break, then only 2 more!! My skin is really red, mostly in the center and now it’s under my armpit too.

    I’m exhausted. Tinkerbell, I started out working part time in the mornings, then going to treatments. Last week (after 15 sessions) my RO asked me to stop working so I could heal faster. It was the right call, I probably should have stopped sooner. My work was great and I used intermittent FMLA for the part time. Also not a physical job, but I felt like I needed to do all my work in a shorter time which probably just made me more tired.

    My RO also told me that the week after finishing is the worst for fatigue and the skin takes up to two weeks to get back to normal. I really just want to feel like myself again!

    Good luck everyone stay strong and take each day as it comes. We’ll all get through this!

  • AZNative2020
    AZNative2020 Member Posts: 18

    Thanks for the update, RhodyGirl55, when did you notice your skin getting red? So, were you supposed to finish Monday instead of Tuesday or did they plan to give you the day off? I heard that the two weeks after will continue to have symptoms and then we can heal.

    I just finished #17 and my skin is pretty good. I do have some bumps below my left breast, but no itching yet. (My RO asked me about itching Monday after Day 13) My clavicle is a slightly darker than the rest, but that's because of the skin fold that happens when I raise my arms. I am trying to turn my head to the right as much as I can to alleviate that.

    My techs asked if I could come in later Tuesday so they can map out my last five that are boosts. I don't like the fact that they are boosting my scar (no where near where my tumor was) I went direct to implants, so my scars are on the top of my aerolas. Hoping my poor skin can withstand five pounding sessions.

    I am tired and headaches wake me up around 4:30 am almost daily. I have diarrhea- anyone else suffering? I am drinking over a gallon of water and have upped my protein this week. I find that if I eat before treatment, I get a bit nauseous so I have been eating after. (my treatments are at 9:20 am) I walk 2 1/2 miles right when I get home and then try to get at least one or two things accomplished before I have to take a rest.

    How did everyone else fare this week?

  • Rosie24
    Rosie24 Member Posts: 1,026

    Tinkerbell, Good luck for next week!

    Rhody, Wow, you’re so close to done! I hope your skin can handle “just” three more treatments. I understand the effects are cumulative so each day is a little harder on the skin. Did your RO give you anything different to use as it got redder? The nurse gave me a new lotion to try called Skintegrity that’s a clear gel and very cooling when I first put it on. I don’t know how effective it is because I was using 2 different things, Miaderm after treatments because it was more of a lotion, not as messy for dressing a little quicker, then the heavy one before bed, called Aloe Vesta (similar to Aquafor which they said to use if I got redder). I’ve traded the thick one for the cooling gel at night for now. That’s really good that you can take time off work to rest up and heal.

    AZ, I just finished 17 too. It sounds like you’re doing really well with your skin. I have definite redness, bumps, and itching on my clavicle. RO said to apply hydrocortisone for the itching and it also seems to calm down the redness for a while. Your walking routine is great! Our weather here has been mostly cold and wet, but I did have a nice walk yesterday. My sleep is a little off track with being a lot more restless so I definitely feel more tired during the day.

    I noticed my redness increase at about 14 days. It’s bearable with the moisturizers. My bra band was irritating at one point so I took a few days off and wore a tank top as an undershirt. I much prefer being supported in a bra! I’ve been retired for a couple years so this long string of appointments and an almost hour drive each way have made me appreciate weekends again. Happy Friday everyone! (My throat issues have disappeared, thankfully. 😊)


  • rhodygirl55
    rhodygirl55 Member Posts: 30

    Hi,

    AZNative, my skin started getting red after 14 treatments. It might be weird but I've been documenting my journey with a few pics so I could see the progression. I was supposed to finish Monday but now will wrap up Tuesday (!!!) My skin feels better today the third day off. Although it looks like under my armpit is getting worse.

    I had been using hydrocortisone for the itching, but they stopped that because it is drying and made my skin worsen. Now I’m only slathering on the Aquaphor and that makes it feel better, although it’s quite messy.

    I also think that I have had all kinds of symptoms- stomach issues, headaches, dry throat, sharp pains and skin tightness, and a couple of down days mixed in there too.

    the end is in sight! And now with more sunshine every day :)

    Hope everyone has a good week

  • AZNative2020
    AZNative2020 Member Posts: 18

    Day 18 of 30 Done!

    RhodyGirl55, I have been taking photos too. So excited for you to be finished tomorrow! Hope the worst is behind you and you can start healing.

    Rosie24, hoping the bra band gets better. How's the itching and redness after the weekend off? I bought a 2 pack of very large sports bras after surgery (I can step into them) and that's what I have been wearing- they're not tight and I can put a folded tissue under my left breast to absorb any sweat especially on our walks. Arizona is having what we call Chamber of Commerce weather. Mid 70s and beautiful. I would love to go to a Spring Training game, but with the strength of the sun's rays, I better not. I walk with a long sleeve cotton t-shirt with a Buff (what hikers wear) around my neck to protect it all agasinst sunburn.

    Saw my RO today after treatment. She says my skin looks really good considering I'm in the fourth week. I have some what look like bumps but aren't raised under my left breast. She called it radiation dermatitis. My underarm and clavicle are beginning to show signs of slight darkening. No itching or rash. She says keep doing what you're doing.

    I so appreciate the weekend. I actually got many things accomplished and didn't have to take a nap which was a first. I've been sleeping better, so that is always helpful. Sending my best to everyone in this group.

  • JLBinPDX
    JLBinPDX Member Posts: 71

    I must've found the topical green tea idea on the Internet, but can't find much now. There have been a few studies but with very few participants. I had good success in 2017. I kinda remember I brewed 10 or 12 tea bags and left it very strong. Then I put three or four per small ziploc. I remember I used one all of the radiated breast right after treatment. I tried to do it two or three more times/day. I see from a link or two that the tea bags need to be fresh. I think I did it every three days. I used some lotion but nothing extensive. This is my plan when I start radiation in a couple weeks. Seems like there's nothing to lose as it's cheap, pretty easy, and won't impact your clothing.

  • Rosie24
    Rosie24 Member Posts: 1,026

    Hi AZ, It sounds like you’re sailing through with good skin! For the sun & outdoor activities, have you checked out the lightweight SPF shirts from places like Eddie Bauer? They’re blouse style and very cool but still give you some sun protection. I wear them a lot for top-down car time with my DH’s car club.

    I definitely have some redness but the moisturizers are keeping it from getting worse. I’ve been wearing different bras which helps because they hit in slightly different spots. Overall I feel like I can make it to the end, 7 more as of today!

  • lms458412
    lms458412 Member Posts: 289

    Just checking in to say hi and see how everyone is doing.

    Congrats to Rhodygirl - today is your last treatment! Yay!

    I'm 2 weeks past my last treatment and doing well. Energy level is good. My skin is still a bit pinkish tan, but the peeling has gotten a lot less. I've been moisturizing twice a day, drinking lots of water, and eating healthy so my cells could recover.

    Looking forward to congratulating more of you as you finish!

  • rhodygirl55
    rhodygirl55 Member Posts: 30

    hi all,

    We’ll have to save your good wishes for Friday 😀

    I saw the RO yesterday and she wanted to give me a few more days off to help the redness subside. So Fingers Crossed Thursday and Friday will be my last two.

    She also gave me a new cream Silvadene, which is for burns. I do think just 24 hrs with that and the redness has gone down.

    What a journey! I’m just taking it a day at a time and today is already in the 50s here so a nice walk on the beach will be perfect.

    Rosie and AZ I sure hope you continue to have no skin issues.
    Tinkerbell let us know how you’re faring now that you’ve started.

    Take care all.


  • birdsndognow
    birdsndognow Member Posts: 16

    Hello RhodyGirl55

    That is great you're finished soon at the end of the week. I just watched a YT video where a girl talked about that Silvadene. Supposed to have silver in it, which is anti-microbial. I'm probably gonna need that too eventually. I'll be thinking of you Friday!


  • birdsndognow
    birdsndognow Member Posts: 16

    Hi LMS458412, It's good to know, 2 wks after radiation, you're starting to heal. I hope it'll be like that with me. Thanks for mentioning good food and to drink water. I keep forgetting about the water.

  • tinkerbell107
    tinkerbell107 Member Posts: 293

    Hi everyone. Just checking in. Day#2. I was pleasantly surprised the RO changed my treatment to 19 sessions rather then 25 sessions. No rhyme or reason. Not going to argue, lol... I find my arm and back hurt more than anticipated. Rather an awkward, uncomfortable position. The deep breathe hold went ok. Sometimes the tech forgot to tell me to breathe after holding my breath for awhile, so I did when it became 2 much, so the machine must of been done. Who knows...

    My stomach up through my neck is warm 2 touch for awhile after treatment which I wasn't anticipating. Plus my BP went up but not in the high alert range, but higher then usual.

    Hopefully everyone is fairing ok, one day at a time.

  • Debiiii
    Debiiii Member Posts: 7

    hi


    just did CT for 21 consecutive days of Rad starting March 26 ... Dr said no creams and ok to take vitamins ... any indie in what to expect ... the tech today was very a Mayer if fact felt like I didn’t connect w he

  • Rosie24
    Rosie24 Member Posts: 1,026

    Debiiii, Sorry I didn't understand all of your post, but the no creams directions from your Dr is surprising. Almost everyone here and in other threads about rads has mentioned using something on their skin. Maybe this is a new approach?

    Coincidentally though, I was chatting with a woman today in the changing room waiting area and she said she's only used moisturizer a few times and is not red at all. I use it multiple times a day and I'm definitely red, almost peeling on my clavicle. She is African American and I'm Caucasian but I thought redness was a random side effect not related to skin tone?

    We're both finishing up our 25 treatments next week, but I learned today that my treatment uses a “higher energy" level than hers. Our team was running behind schedule and a different tech came to get her for another treatment room. She was done pretty quick and the tech came with her and apologized to me that she couldn't take me to the other machine because the machine didn't have the energy levels needed for my plan. So probably my skin is getting more heavy rads than some, and it's also not very tough. Not exactly a winning combo!

    So, three more to go next week, then done. I'm hanging in there but happy to be so close! Good luck to everyone else here. I wish you minimal skin issues and no mysterious germs. 😊

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