Starting Radiation November 2017

AngelaJL

I'm using Calendula Cream two or three times a day, and I was instructed to apply it from my collarbone down to below the breast, and from the center of my sternum all the way past my armpit despite having treatments in the prone position.

My skin started getting pink after the 3rd treatment, and it started to itch a lot and break out after the 8th. I thought the itching and breakouts were my skin reacting to the cream (I have very sensitive skin), but when I saw my RO on Monday, he said that I actually have folliculitis as a result of the radiation. It's not a reaction to the cream. My RO said I could also use Radiagel or aloe if I wanted instead, but I'll stick to what I know. He also told me to add hydrocortisone cream into my rotation, between applications of the calendula cream, in order to stop me from scratching at the skin.

So now I'm 13 treatments in, and my armpit, underboob, and the skin right around the areola are really pink and tender, and I have an itchy rash along my sternum. I'm not looking forward to how much worse it might get in the next two weeks. But at least I only have 8 treatments left!

AngelaJL

Oh, also, I was supposed to have treatments Monday, Tuesday, Wednesday, and Friday this week - with just Thursday off for Thanksgiving - but I got a call from the radiology team this morning saying that the radiation machine wasn't working! So my appointment was cancelled and I'll have 4 days off in a row. Hopefully my skin will use this time for healing.

Georgia1

Thinking good thoughts for you and wishes that the long weekend will give your skin the break it needs. Thank you for starting this thread!

53nancy

AngelaJL, hope you have a restful and healing weekend. Good thoughts are with you

AngelaJL

Thank you both!

Milkweed93

Hi there!

Just starting rads next Tuesday 11/28. I have sensitive skin also and got folliculitis with chemo, so I'm a bit nervous about this next step. Set-up was fine, but not a lot of info besides certain creams/ointments to use. You guys are far more informative than the RO office. Maybe after the first one, she will tell me more. I was never told what the rad field would be, so the suggestion to lotion up to clavicle and to breast bone is helpful. I asked about the "prone" position possibility, but they don't have a prone board (it costs $10K she said - why did I have to know that?), so I will be face up. I can however do the breath hold, even though my tumor bed is on the right side. I am not a candidate for the hypo-fractionated, so 30 treatments for me - 25+5 boosts.

I see that some of you are saying to treat your skin before the rad session, but aren't we supposed to have the whole area clean for it? My sessions will be at the end of the day, and I'll be coming from work some of those days, so I'm wondering if I should bring something to wipe any residual lotion off my skin before tx.

Also, I got a good teeth cleaning last week and I'm seeing the Dermatologist next week. And my surgeon suggested a lymph drainage session before rads, so I did that today. I have a lot of congestion around my surgery, but no lymphedema. Whew!

Also, I have been washing my pits with Hibi-Clens since I tend to get folliculitis there, and I have not needed deodorant. No smell! I hope it helps keep my skin clear thru rads!

Where are you guys buying bras/camisoles? I would like to get a cotton bra (no underwires of course) and some good cotton camis.

Thank you!!!

AngelaJL

Hi Milkweed. Welcome aboard! Regarding treating the skin before rads, my RO said to begin using the calendula cream maybe a week before I even began treatments, as he said it can also work preventatively. But yes, I have to wipe off any creams or deodorant immediately before each session. The treatment center where I go provides moist wipes called "mammowipes" in the changing room along with the dressing gowns, so I use those to clean the area.

I've been wearing the Warner's "Easy does it" bra since beginning treatment. It's got no wire and no scratchy seams. Pretty much the whole thing is soft nylon, and it's pretty comfortable. Not terribly supportive, but oh well! Today, on a whim, I put on one of my normal, cotton, underwire bras from before all this, and I was unpleasantly surprised at how uncomfortable it was on my radiated skin. So I took it off and spent the rest of the day braless at home!

lifechoices2017

HELLO Milkweed...

I've gotten my bras from Lane Bryant cotton no wire. Kinda pricey, but I'm a 42dd and they support the girls well. I have Miaderm and I start next Wed, so I've been lotioning 3xs a day. I've been wearing a cotton t-shirt to bed.

I'll be doing 20sessions, prone... But I've been lotioning a wider area than just the boob. For deodorant I'm using Crystal with the pink top.

Looks like a few of us will be on our rad journey this coming week. Praying for all for healthy bodies, lessened SEs and strength to endure with minimal fatigue.

AngelaJL

I've been using this EO deodorant spray. My RO's nurse said it's fine to use. The nice thing about it is that it's a spray, so I don't have to deal with the friction and pressure of applying a stick or roll-on deodorant to my tender skin. Also, this is the entire ingredients list: Organic Ethanol, Purified Water, EO Essential Oil Blend [Organic Lavender Oil, Organic Grapefruit Peel Oil, Organic Geranium Maculatum Oil, Organic Vetiveria Zizanoides Root Oil, Organic Cedrus Deodara Wood Oil, Organic Cananga Odorata Flower Oil, Citrus Bergamot Fruit Oil]. No salts, no baking soda, no aluminum...nothing harsh!

Ellyn27

Georgia1 - Thank you so very much for all the info on protein. They haven't told me any of that. I start on the 27th so maybe then they will. I printed out your list so I can plan a bit.

Milkweed93 - I'm glad you asked the question about when to lotion up. I'll be honest, I don't shower every single morning (only because I don't want to mess my hair haha) and was wondering if I lotion up, how will I clean that all off before treatment. So far they only told me about Aquafor and that stuff is like vaseline. They told me to lotion twice a day, once right after treatment (like in the changing room) and again later in the day. 

AngelaJL - I'm so glad you mentioned about the mammowipes. I saw them in a basket in the changing room but didn't know what they were for.

Can you ladies tell me, if you don't shower before treatment, do you just clean the area with a warm cloth and then use the wipes when you get there? So I go with no lotion on? One more ... do you put any type of cloth or something between your lotioned up breast and your bra so you don't mess your clothing up? Thank you so very much.

AngelaJL

Ellyn, I shower each morning, and I apply the calendula cream and deodorant immediately afterward. My treatment isn't until afternoon, at which time I use just the mammowipes to wipe down the breast and underarm. That seems sufficient. These wipes are designed to remove deodorants and lotions from the skin.

I don't put any additional cloth between my breast and the bra. I bought these two cheap bras specifically to use during these 5+ weeks of treatment, so I don't care if they get ruined by lotion.

Ellyn27

AngelaJL - Thanks again for sharing. The way they showed me (nurse was showing me on herself over her clothes) was to go from my collarbone all the way down and under my breast a bit, and then from armpit to center of chest. I don't care as much about messing up the bra, but I may need to wear a cheap tee-shirt under my clothes so my clothes don't get ruined. They don't make it easy!!!

Georgia1

Ellyn and all, looks like there are a lot of us starting this week. If I did it correctly, there is a photo attached here of the written instructions I got; this is from the Johns Hopkins cancer center. Sharing because most of us are only getting instructions verbally and it's hard to remember all this stuff!

My doctor said it was fine to do calendula cream up to four hours prior to radiation, and not wipe it off. So that's my plan. I'm going straight from work so I will lotion early morning and then after the treatment in late afternoon. So far the cream dries quickly and has not stained my bras.

She said I do have to wipe off deodorant prior to treatment, so I bought Neutrogena naturals towelettes as the best store-bought option I could find without alcohol. I will ask about the mammowipes when I go in tomorrow; thanks Angela for the tip.

The women on this site who are using Aquaphor seem to be using it only at night because it is so greasy and heavy.

Ellyn27

Georgia1 - Thanks AGAIN!!!

Milkweed93 - Based on what I read here (on a different thread) about bras during treatment, I bought an Amoena Frances Front-Closure Post-Surgical Bra. It's cotton and doesn't have alot of support, but because I'm large on top I need something. I can't go braless because not only is that uncomfortable for me, but I would have underboob sweat going on ... and that plus lotion just sounds nasty haha

Does anyone know of a thread here with high-protein meals for during treatment? I looked at one that had healthy meals in general and they are not protein specific, plus they aren't very recent either. Would love to know what others are having. 

I was doing a bit more research on protein, based on the awesome info Georgia1 posted above. I found this site that shows pretty much what she posted, plus some additional info about how to determine how much protein we need, along with some high protein snacks. https://www.oncolink.org/support/nutrition-and-cancer/during-and-after-treatment/protein-needs-during-cancer-treatment

Milkweed93

Georgia - Thanks for sharing that info from JH!

Angela - good to know about the mammowipes. My place probably has them too. If not, I will get something like them.

Ellyn - I have a great book called "Cancer Fighting Kitchen" that I use when I want to get creative. They have fish, chicken and turkey recipes mostly, but I'd be happy to share some if you want to PM me (or I could post here - I just don't know if it is okay to do that?). Each recipe yielded about 35 grams of protein per serving. Also, if you have a good meatloaf recipe, use lean ground turkey and add grated cheese for the fat. That might bump up the protein a bit. During chemo, I kept hummus around and hard cheeses and nuts for snacks. I eat a lot of eggs and have bought some egg whites to cut the fat and calories of the yolks. Thanks for the bra suggestion!

silver2000

I will be starting November 30. I will be in the prone position (face down) during this to minimize risk to my heart and ribs. Not the most comfortable position but I thing worth it. There are limited options in Canada for creams but I found a location for Calendula cream nearby and will be buying it on Monday.

lifechoices2017

Yeah, I'll be purchasing the calendula cream as well..i have been using Miaderm a week ahead morning, afternoon and Aquaphor before bed. I plan to do the same after my sessions start. I'll be using aloe when I get home. Been keeping that in the fridge so that it's cool on my skin... I'll continue to do the Aquaphor at bed because as everyone says that's thicker on the skin. The Miaderm dried pretty quick and doesn't seem to be too messy. I did read on the instructions for miaderm that you can use 1hr before rads. Will have to check with RO on that. Im wearing cotton t-shirts to bed now and cotton bras, no wire.

DodgersGirl

tip-- when your skin gets red from rads and your RO gives you a lotion like RadiGard (which calms pain), you can mix it with aquaphor (1/2 and 1/2) to apply. Works really well

Georgia1

Thanks for the tip!

Georgia1

Thanks for joining us. it's great to have a team.

lifechoices2017

DodgersGirl, this is a crazy question...but I'm a brownskinned girl, my skin probably won't turn red lol...at least I don't think so as I've never had reason to suntan...so I'm wondering what are the effects on my skin... I know my RO said that the spots on my skin would be more pronounced but not sure of how quick of the SEs reactions.

Kiwi-in-Thailand

sunnyjay.. I’ve also been told aloe only... no soap, no other lotion and no deodorant... quite what I’m supposed to smell like after a month is beyond me, especially given the climate in Singapore:-)

Had the mapping last week and start Monday. 15+3 boosts. They didn’t do permanent tattoos but what felt like a marker pen set of marks (18 of them) all of which they then covered with little bits of white sticky plaster. One set on the side of both breasts and then one Big set between them. Looks lovely (not). Hey Ho. I’ll be lying on my back for the treatments.

Georgia1

Lifechoices and Kiwi -- if you look a little earlier in the thread I posted the helpful info I got from Johns Hopkins. Darker skin is expected to get darker, at least temporarily. And there is info on calendula cream and an acceptable deodorant. Good luck!

Milkweed93

Hi Kiwi! It is so interesting what other MO's in other countries do as a matter of course regarding rads (you and I have such similar profiles). My RO said that I was not a good candidate for the 15+boost because of chemo, even though she knows that other countries do it. She specifically consulted "Harvard" docs on this - whatever - and strongly wanted me to do the 25+5. I was really hoping for the hypo-fractionated. Oh well. Anyway, good to hear from you again!

OCDAmy

So nice to see all the September chemo group moving on to rads.

53nancy

Milkweek93; nice to meet you. I find every day when I go for my radiation treatment, I have questions and there is no problem in getting answers. I had hear here about extending the area covered by creams, and have been doing that since a week before treatment. I was told I could only use Lubriderm and Base Glaxol, and no to my choices. When I brought my Calendula ointment in (got it at the health food store), they approved it, but would not agree to my essential oils or any lotions containing them, and said no aloe vera. I have completed my first five rads out of 16, and no effects showing on my skin yet. I shower every morning and do not apply any lotions to my skin until immediately after radiation, and then I do it generously, up to the collarbone, mid breast, over beneath my armpit and two inches below the bra line. I think - better to be safe than sorry. At present, I am applying my creams three times a day, but may up to more. Not sure how much is too much. Good luck with your rads and I hope it goes well for you with minimal side effects.

As far as the protein diet, I have been told 70-90 g a day; I thought it would be difficult but am amazed at how high in proteins dairy products are. I don't use dairy products normally but guess I can live with it for as long as I have to. Today, I had no problem reaching my goal. I am also using ground flax, chia and quinoa in smoothies with a protein powder and one I made yesterday had about 30 proteins. I usually make them with water but am using milk or adding skim milk powder for the duration.

AngelaJL, I went to the thrift store and got a bunch of cheap tea shirts to wear at home over the creams. Then they can go back or go to garbage. I did buy some "big" tops for going to treatments at the thrift shop as well and they will be gone, too, when I am finished. I was told I couldn't use the Aquaphor so, yesterday when we went across to North Dakota, I was able to return it and get my money back, so am pleased about that. I thought of keeping it, but am not a fan of vaseline based creams. I do like the ones I am using, so may keep that up from now on.

I enjoyed everyone's post today; first chance I have had to be on the computer, but now I must get back to my company, so will just wish you all a good weekend and good luck with ongoing and upcoming rads. I anyone finishing up this week?

53nancy

Linwentz, how did this week go for you

DodgersGirl

lifechoices2017- there is a great explanation of radiation here

part of the info on that link site states, " Radiation wounds are not "damaged" skin, per se, as much as they are "missing" skin- let me explain- radiation causes skin to fail to reproduce properly, and thus as you "use up" your normal skin, like we all do all day, there are no new layers of skin coming up from the bottom. So eventually the area can ulcerate. This might look like a thermal burn, but it has very little in common with a thermal burn, and the treatments for thermal burns will not help much"

so think of the rads penetrating your skin and damaging the skin deeper than at the surface. As that area has skin cells killed off, they will be missing when they reach the surface. So part of the healing CAN be waiting for your body to grow all that new skin. That is part of the process that many, but not all, go through the 2 weeks after treatment ends. So my thought on all of this is that the color of your skin won't change how rads may impact the skin at lower levels.

Now, I received bolus which was intended to cause the skin on my surface to die off so the cancer that may have been in my skin can be eliminated. My RD explained that the skin below the surface reaches down deeper in what would look like spikes. So when that skin reaches the surface, it is in like small islands of new skin that the grow to join the other islands of new skin. I don't know if non-bolus treated rad patients undergo this much new skin in the healing process. But it does seem that many ladies talk about peeling or blistering after rads and I assume that is part of this healing process.

Hope this helps

PauletteK

Thank you for all the information especially Nancy, Georgia and DodgersGirl. I didn’t login much the last few days, spending my time with families and friends. Will do my mapping tomorrow / Monday. Rads is getting more real soon. I will need to put my rads thinking cap on.

Hope everyone have a wonderful time on thanksgiving!

Ellyn27

Prepping today for my first treatment tomorrow. I'm making a few meals that are high in protein and making my grocery list for the rest of the week. Fortunately I have lots of projects at home to keep my mind off RADS. I read someone post a few months ago that they bought lottery tickets for each day of their treatment, so I decided that since I'm getting 20 treatments, I'm going to go buy 20 lottery tickets. I never buy them and I know there are a ton of options. I just want your basic scratch-off tickets. I'm trying to keep positive (easy to say now haha). Anyway, thank you to all the ladies that have helped out all the newbies (like me) and I wish everyone good luck with their treatments and outcomes. It really is wonderful that we have each other