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Starting Radiation November 2021

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mamacure
mamacure Member Posts: 256

I had my single mastectomy early October and will start radiation in November. My simulation is Nov. 5 if I have enough ROM. I will be getting full 6 weeks, once daily. Chest, underarms, clavicle area.

I purchased these recommended creams from my hospital and 1 Mepitel sheet.

Hydrocortisone cream for itching

Hydrogel (free from Hospital)

Calendula cream

Avocado oil by Now brand

I also bought Manuka Cream as recommended by my naturopath and started putting it on my scars.

And Aquaphor & 99% aloe vera gel which I already have.

I pray that my skin won't burn too much. Anyone else starting in November?



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Comments

  • Shelster
    Shelster Member Posts: 3
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    Mamacure, it sounds like you are well prepared. I too will begin radiation on November 16. I have already had my simulation. I did not have radiation the first time that I had breast cancer so I am getting whole breast, under arms and clavicle radiation followed by a boost to my internal mammary lymph nodes. My cancer recurred in the internal mammary lymph nodes. When I go for my first treatment they will tell me how many treatments I will have. They estimated 3-4 weeks. I, too, am concerned about side effects and have bought all the creams. I don't know what a mepitel sheet is so I will research that. Good luck. I hope that you don't have a problem with SE.

  • mle42
    mle42 Member Posts: 124
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    Mamacure, thanks for starting this thread! I am scheduled to have my simulation on Nov 18 and start radiation Nov 29, assuming no hiccups in recovery from surgery last week. I don't have a finalized plan yet (still waiting on the pathology report post surgery) but expect to have whole breast radiation plus internal mammary nodes, and possibly also axillary and clavicular nodes. When I started treatment in June I had hoped to get through chemo/surgery/radiation before Christmas, but that seems a pipe dream now. Oh well!

  • mamacure
    mamacure Member Posts: 256
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    Hi Shelster & mle42!

    Thanks for joining me here though none of us want to be here. I wonder when I will get started after my simulation, for some reason, I thought they would start right away but maybe not. I hope my arm will cooperate by end of this week. If your doc recommends creams other than the ones I listed above, please share as you find out. Miaderm is another one that I may look into. Best wishes for the both of you, I hope we all finish with minimal skin issues . I’m sorry to hear that it reoccurred in the nodes Shelster. I hope the radiation will zap it once & for all. I was hoping to be done by November (insurance reasons too), but now looks like June because my onc wants to put me on Xeloda for 6 months after radiation. Ugh. I was supposed to do Xeloda first since I didn’t get PCR but I decided to zap it first & get that out of the way. She was ok with that but still have to get Keytruda every 3 weeks.

  • mle42
    mle42 Member Posts: 124
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    Something not on your list - Radiaplex gel is what my RO recommended. I stocked up on that, a calendula cream, and aquaphor. It sounds like there are a wide range of reactions to radiation, some sail through with just a little pinkness, and other people end up with blisters and terrible fatigue. Fingers crossed that we are all in the first group!!

    Let us know how the Menuka cream works for your scars. I still have the steri-strips on my incisions so am not putting anything on them yet, but planned to ask the surgeon at my follow-up appt this week if there are any lotions and potions they recommend to minimize the scars.

  • mamacure
    mamacure Member Posts: 256
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    Thanks mle42, I’ll look at getting that radiaplex gel. I still have some steri strip left, as they loosen on their own, I’ve been cutting them off a little bit at a time. Just 2 more areas left. I hope we are in the first group too!!

  • sailca
    sailca Member Posts: 10
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    Hi,

    I had my simulation yesterday and expect to start next week for 7 weeks. I too was hoping to have this over by the holidays. I did not have radiation when I had breast cancer the first time. I will have rads to my whole breast and lymph nodes since the reoccurrence was between my implant and skin and in a node. I am trying not to worry about side effects as the TCHP was horrible and it can’t be as bad as that was.

  • serendipity09
    serendipity09 Member Posts: 769
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    Hi! Just chiming in to show some support. I am three weeks (yesterday) from my last rads session. I did 25 sessions with bolus. Miaderm was what my RO gave me and it was my best friend during rads (3x a day). Aquaphor and BeeCure (Amazon) after rads.

    Hoping that you all have no to minimal SE's.

    Wishing my best to you all!

  • mamacure
    mamacure Member Posts: 256
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    Thank you Serendipity! I can’t wait to get to the other side of radiation. I will get Miaderm ready.
    Hello SailCA, thanks for joining us. I am thinking the same, it won’t be as bad as chemo, it will certainly be shorter than chemo. I had PT yesterday & today to try to stretch my arm & shoulders. I hope I will be ready for the simulation.

  • serendipity09
    serendipity09 Member Posts: 769
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    Mamacure - you are very wise to continue the stretching, it helps a lot, especially towards the end and after you finish rads. I applied the Miaderm after every session, even at the beginning to help prep my skin per say. Many will tell you not to use it until you start turning pick or feeling discomfort. It's a personal decision, but it really did help me. Good luck with your simulation.

  • pamep
    pamep Member Posts: 66
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    I started hypo-fractionated 16 session radiation last week, so with the short treatment period it is going by pretty quickly. My RO recommended Fruit of the Earth Aloe Vera 100% Gel and calendula cream. I apply the aloe vera gel and Boiron Calendula Cream immediately after each session. He also gave me a small sample of Rejuvaskin Skin Recovery Cream that is specifically for radiation. I ordered a tube of that online and apply it in the evenings after sessions. So far no skin problems, but my RO said to expect them toward the end of treatment.

    Wishing everyone well during their therapy. It is a little out of this world, but hopefully it will prevent ipsilateral recurrence!

  • mamacure
    mamacure Member Posts: 256
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    Thank you PamEP, hope your sessions go fast! I am very hopeful of these radiation treatments. I consulted with proton therapy doc & they were not able to convince me (or themselves) that proton was superior

    Serendipity- Did you use regular Miaderm or one with lidocaine? Where did you buy it? Thanks!!

  • btwnstars
    btwnstars Member Posts: 81
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    Hi all, thanks for sharing your experiences.

    I have my mapping appointment next week, and if everything goes ok, possibly starting the following week Nov. 15. I will definitely be going into the holidays as I will have 31 treatments, a few at the end are boost. I switched practices for radiation to be closer to home. I am glad I did because I like this RO better, she advised standard scheduling versus accelerated for better cosmetic outcomes. They are also going to be giving it in the prone position as it's my left side. It was recommended to get miaderm if I can with calendula cream as a backup.

    Not overly concerned about radiation itself, but more the schedule. In addition, I have to figure out what to do with work. I have been working from home, but we are starting to go back. My manager has talked about working with me to do some sort of hybrid, but I really don't know how it will all pan out. So I am more concerned about fatigue and just being able to get thru it all without losing my mind.

    Good luck with your mapping mamacure!

  • serendipity09
    serendipity09 Member Posts: 769
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    mamacure - my RO provided me with Miaderm (it had lidocaine in it) every week during my visit with him. I used it 3 times a day and just slathered it on. The last two weeks I used it more often. My skin started getting red towards the end of the first week. I see it on Amazon, but it's bit pricey. I hope your RO provides you with something.

    BtwnStars - Some people get fatigued, some don't and some just a bit. I did early on, but nothing terrible. Towards the end was very difficult for me, again, many others from previous months' thread thought it was tolerable.I hope everything goes well for you.

  • mamacure
    mamacure Member Posts: 256
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    Thank you Serendipity, I will ask my RO but so far they only gave me hydrogel.

    Btwnstars, I took a leave when I started AC, it brought me to my knees. I still have chemo brain and taking a leave until I am done with radiation. I hope Xeloda will be okay to work through. I hope to go back when I feel up to it. I hope they keep my job too.

  • serendipity09
    serendipity09 Member Posts: 769
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    mamacure - will you start Xeloda after radiation?

  • mamacure
    mamacure Member Posts: 256
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    hi Serendipity,

    Yes after radiation for 6 months. My onc wanted me to start before radiation but I wanted to get radiation first. She said either way is fine by her. I am going to ask for 7 day on 7 day off at a lower dose. Heard that will have less SEs. I’ll see what she says……she was suggesting 2 wk on 1 wk off.

  • serendipity09
    serendipity09 Member Posts: 769
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    Mamacure - I start 2 weeks / 1 week off on Tuesday SIGH! We'll see how it goes, I've started slathering my feet with Aquaphor as of tonight and going forward. I didn't get the hand/foot last year, but was only able to complete three cycles. Hoping and praying I don't get it this time around either and that I'm able to complete my eight cycles.

    Have a great night!

  • mamacure
    mamacure Member Posts: 256
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    Serendipity, I hope you can complete 8 cycles this time!

    Well, my ROM was not good enough for the simulation today. Boo hoo. At least I did the breathalyzer (LOL) test out of the way & got my schedule. My last session will be 12/29!! Just great for insurance out of pocket. I asked if I can keep the nose plug so that I can use it for infusion port flush. I go back on Tuesday to finish the simulation. I’ll be getting the tatoos. My machine was Philips. They gave me a special parking pass to park right up front.


  • mle42
    mle42 Member Posts: 124
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    Mamacure, sorry you couldn't do the simulation. Lots of stretches over the weekend and fingers crossed for next Tuesday! Great news you'll be able to finish by the end of Dec.

  • serendipity09
    serendipity09 Member Posts: 769
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    Mamacure - so sorry you couldn't do the simulation today. Stretching, especially the wall "climb" was especially helpful for me. On a positive note, at least you'll be done before the New Year so there are no out of pocket costs. Parking up front is awesome. Our valets are not in service still due to covid. I wouldn't have used them even if they were, but it would've been nice to have the option and not had to have walk across campus on the days I was super fatigued.

    I wish I still had my port, it was removed during my exchange surgery in July, all to be diagnosed again four days later :/

    Best of luck on Tuesday!

  • macdebbie
    macdebbie Member Posts: 65
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    Hi manicure! Thx for starting this thread. I also had a really hard time with ROM during simulation but made it through - barely. My shoulder definitely was hurting. They told me for the next appts to take Tylenol an hour beforehand. That seemed to help a bit.

    I wash supposed to have my dry run on 11/3 and first radiation session on 11/4, but the clinic messed up and never got pre-auth from my insurance. I only found out when I called my insurance and they told me. It was a teary 1-1/2 hours of calls with the clinic and the insurance, and they ended up sending me home - after an hour drive until they straightened it out.

    I was able to have my dry run 11/4 and first session 11/5. Amazed how quick it is. If all goes well I should be done the day after Thanksgiving. They are not sure yet if they will be giving me the boost. Depends on how my skin does and the conversation between my BCS and RO. Hoping not.

    After I psyched myself up to get the tattoos they told me they don't have the supplies to make them, so stickers it is. It's more of a pain to moisturize around them, and I don't know how I moisturize under them if I burn, but I guess they will tell me that.

    I did end up finding a bra for radiation and beyond that I LOVE. So soft. Not cheap, but I searched all over for something cotton with a wide band that had adjustable straps. It was developed by a RO. If anyone is interested the site is www.shopmakemerry.com.

    Seems we all got similar creams. I'm using a rotation of Coral Safe Aloe Vera Gel, Earth Mamma Nipple Butter, MJ's Herbals Calendula Salve, Insta Natural Emu Oil and Aquaphor based on a post someone linked to me of a friend of theirs who did well with her skin. I asked my RO about using Mepitel, but they wouldn't authorize it because they have never heard of it. I probably won't use them for this, but also found two other great creams which I'll use elsewhere as I have really dry skin naturally - Glow Organics Belly Butter and Keys Avo Gel (Avocado Oil Gel).

    My appts after Mon and Tues will be at 9:45am. I plan to just shower and wash off the Aquaphor from the night before and not put anything on. Is that what is best? The nurse told me at my dry run to think of the machine as a frying pan, what you put on your skin as the frying oil, and you as the thing that fries and any barrier you create will cause you to burn more. So hopefully having nothing on will be ok.

    Here's wishing all of us a great month!

  • serendipity09
    serendipity09 Member Posts: 769
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    The radiation "burn" comes from within, it's not like a regular sunburn that burns the outside of the skin. I learned this as I went along, though in my head I was going to get a sunburn. This is why they tell us that for up to two weeks after our last session we can still experience SE's, the radiation is still working it's way out, in my case I continued to get red and had other skins issues.

    I will say this, because I did begin to get red from week one...the creams, lotions, aloe, calendula, whatever you choose to use, is very soothing on the hot skin and made feel like I was doing something to help protect my skin. I was very diligent on applying it to my skin every day several times a day because, again, it felt so good.

    Here is a link to a post that if I recall correctly was written by an RO who was undergoing radiation. It really helped me understand what was happening from within. I hope you all find it helpful https://community.breastcancer.org/forum/70/topics...

    Macdebbie - I wore my surgical bra throughout because of exactly what you said, the wide band and the softness. On nights that the bra bothered me I wore a soft camisole. After I finished rads I was given two mesh-like surgical bras that felt amazing. I wore them daily, round the clock until I healed completely, it also helped my sheets and tops from getting greasy.

    Have a good day!


  • NatureYogi
    NatureYogi Member Posts: 135
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    Hello all, I'm almost done with radiation and wanted to give you all encouragement and support. I had 25 regular treatments with bolus and 5 boosts, I have two boosts left. I am hearing that Manuka Honey is very good during treatments, I only used Aloe Vera and Calendula/ Later on when I was really red and sore, the RO prescribed Silvadene cram, which helped to soothe and heal. If you are having clavicle radiated, you might get sore throat, drink warm tea. \

    I hope you all are doing well, hang in there, you can do this!

  • lw422
    lw422 Member Posts: 1,399
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    Mamacure--sorry you didn't get the simulation done; has it been rescheduled? I just have to ask... what on earth are nose plugs and why did you need them? :confused1:

    Good luck, everyone. I've done 5 of my 6 weeks; only boosts to go! It hasn't been too bad so far. We can do this!

  • mamacure
    mamacure Member Posts: 256
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    Thank you so much veteran members for chiming in! Thanks also to new posters!

    LW, I have my second go at the simulation tomorrow. I had a good PT session today so ready to go. She said even if I overstretch, it won’t do any harm. Relax & breathe thru it. LOL! On the nose plug! When I get my port flushed for Keytruda, that smell makes me vomit. So a nose plug really helps with that. I was using foam ear plugs as nose plugs but this will be easier :) you are almost done whoo hoo!!

    Thanks Serendipity for explaining the burns from inside out!

    MacDebbie- I love that RO of MakeMerry. I watch her on YouTube! https://youtu.be/JeL1ZdGrh1A

    What in the world your RO hasn’t heard of Mepitel, there are so many positive studies on it. Top hospitals now provide it so I get frustrated when others don’t keep up on research & don’t provide it (my hospital included). I plan to bombard my RO with articles


  • lw422
    lw422 Member Posts: 1,399
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    Mamacure--I know about the port flush nausea...yuck. I used to try to keep a mint in my mouth which seemed to help. I was just curious about the "breathalyzer" test and nose plug; I didn't have anything like that for my radiation prep!!

    Good luck tomorrow; I hope your simulation goes smoothly.

  • wondering44
    wondering44 Member Posts: 254
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    I started six weeks of radiation on 11/01/21. RO mentioned I should not see SEs until the end of week two. I was given Aquafor to try for burns/redness. I decided against it after I read the ingredients. I ordered Seven Cream. I liked the ingredients in it after reading about what radiation patients should and should not use to the areas treated. I have not tried it yet, so no experience on if it helps or not.

    List of ingredients.

    • Shea butter
    • Avocado oil
    • Coconut oil
    • Neem oil
    • Aloe vera extract
    • Calendula extract
    • Manuka honey

  • cindyny
    cindyny Member Posts: 1,146
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    Rads were Dec 26, 2017. 16 days hypofractionated. I used Aquafor, the pure aloe, and towards the end hydrocortisone to stop the itch. I wore 2-3 cami shirts w built in bra because the Aquafor is greasy and can destroy clothes. When I was done I threw them out, glad to never see them again. My skin held up well, small breasted, very fair skin. Towards the very end skin was itchy and flakey. Fatigue hit me a few weeks after I completed rads. I’d be fine, then really need a nap. Tattoos were small dots, one on breast bone, one under arm past node scar. I’ve seen a dermatologist, who does my yearly full body check, for tattoo removal (free). The one on my breast bone was visible in bathing suits and certain shirts, reminded me of a blackhead. Vanity or whatever, the one on breast bone is gone and the other is very faded. The actual breast after time appears to have had a “lift” while the non rads breast didn’t. Rads breast higher and tighter. That’s the only thing I found to laugh about, one breast looked like my 18 year old breast and the other was a full 58 years old.

    Those of you who have been through chemo have been through worse than rads. It is very doable. Take care of your skin, drink plenty of water, and treat yourself well (be kind to yourself). HUG

  • moderators
    moderators Posts: 7,925
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    Hi All,

    Chiming in to invite you to our Zoom Meet-up for people in treatment (not only Chemo, as is currently in the title). Here is the information in case you are interested Medicating

    It's held every Tuesday at 1:00pm ET but you only register once.

    Today at 1:00 PM Eastern Time (US and Canada)

    Register in advance for this meeting:

    https://breastcancer-org.zoom.us/meeting/register/...

    After registering, you will receive a confirmation email containing information about joining the meeting.

    Warmly,

    The Mods

  • serendipity09
    serendipity09 Member Posts: 769
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    Mamacure - You're in my thoughts today, Hoping all goes well {Hugs}

    LW - on to boosts! Almost there!!

    Wondering, that cream sounds amazing!

    Cindy - I don't like the tiny dot on my breast bone either, it also reminds me of a blackhead.

    Have great day everyone!