Radiation March 2019

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kec1972
kec1972 Member Posts: 269
edited May 2019 in Radiation Therapy - Before, During, and After

For those of us starting or continuing radiation in March 2019. Share your experiences and tips

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  • kec1972
    kec1972 Member Posts: 269
    edited March 2019

    Hi Everyone, happy Saturday! I had #8 out of 21 yesterday(16 plus 5 boosts). Skin is holding up well, but there is definitely more nipple soreness. Also I’m just feeling like that whole side of my chest hurts, the breast itself is sore, and my lumpectomy scar is definitely feeling harder and sore...ugh...I can only imagine what it will feel like be the end of next week...lotioning and aloe gel twice a day

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  • JoE777
    JoE777 Member Posts: 628
    edited March 2019

    hope your doing gentle stretching to keep from tightening up and cording

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  • kec1972
    kec1972 Member Posts: 269
    edited March 2019

    Any recommendations as to stretches to do? No one ever mentioned doing stretches to me.


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  • LoriCA
    LoriCA Member Posts: 923
    edited March 2019

    I've just been lurking since I'm Stage IV and undergoing radiation over a fairly large part of my body for Inflammatory Breast Cancer that has gone chemo-resistant. Just finished #22 and now they are revising my treatment plan (new scan/setup/simulation, etc) before we do more. I wanted to mention this because I haven't seen it mentioned before - if you are using Calendula cream and break out in a severe itchy and painful rash over the entire radiation area, you might be allergic to the Calendula. If you are allergic to ragweed, you should know that it's the same family and especially seems to cause problems on skin that is already irritated (like from radiation). I went through several absolutely miserable weeks going out of mind when my rash kept getting worse despite using 0.5% Triamcinolone Acetonide steroid cream. Some quick research showed the connection between Calendula and ragweed allergies, and as soon as I stopped using the Calendula cream the rash started clearing up. I'm using aloe with lidocaine and Miaderm now.

    Hope that info helps anyone who might be going through what I went through.

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  • mellee
    mellee Member Posts: 434
    edited March 2019

    Thanks for the calendula tip, Lori! I'm watching my skin very closely, as it is sensitive at the best of times and reacts badly to all kinds of products.

    I've completed 2 out of 32 of my radiation treatments. I'm slathering on Miaderm and My Girls cream. So far, so good, but I have a long ways to go!

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  • mellee
    mellee Member Posts: 434
    edited March 2019

    kec1972, I bet the exercises recommended post-mastectomy would work, since they're intended to keep your shoulder flexible.

    Here is a place to start: https://www.mskcc.org/cancer-care/patient-educatio...

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  • Misha13
    Misha13 Member Posts: 240
    edited March 2019

    Hi ladies! I’m finishing my rads this month, on the 11th. Only 6 more to go!! I’m having a moment right now and I’m not sure where it came from. I’ve heard rads can wear on you and I guess that’s what’s happened. I returned to work after like 8 months off right before rads started, so ive been getting used to that as well. Just want to say be good to yourself and rest and take each day as it comes.

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  • mellee
    mellee Member Posts: 434
    edited March 2019

    Misha, wishing you strength and healing as you head into the home stretch!

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  • santabarbarian
    santabarbarian Member Posts: 3,085
    edited March 2019

    I'm half way through Proton radiation (14/28) and doing well. My only SEs are pinkness and a mild (ignorable) itch, mostly in the clavicle area not so much on my breast. However, my breast feels warm. Much warmer than the other one... I am getting whole breast + nodes, due to TNBC. I have had a few sleepy afternoons but they seem to have been kind of at random, as many days I have had full energy. I am walking a few miles every day and am told that helps keep fatigue manageable... so far, so good.


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  • kec1972
    kec1972 Member Posts: 269
    edited March 2019

    Mellee, thanks for the posts to the exercises. So glad everyone is doing well so far. I have noticed increased(but tolerable) pain at my incision site, and it’s definitely thicker underneath(I’m assuming scar tissue). Anyone else notice something similar

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  • JoE777
    JoE777 Member Posts: 628
    edited March 2019

    Kec,I had practiced gentle yoga for years before my diagnosis and continued the upper body when I was healed. I went to a yoga site that was for breast cancer and was guided by a woman who had had a mastectomy. The quite time on my carpeted floor also helped with stress and anxiety. I'll try to find a site. Jo

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  • JoE777
    JoE777 Member Posts: 628
    edited March 2019

    kec, Dana-Farber Cancer Institute:6poses for cancer patients. It's on their Insight site. I don't know how to capture the address.

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  • LillianGish
    LillianGish Member Posts: 108
    edited March 2019

    Thanks for starting this thread kec1972. Smile

    Hello everybody, I was mapped and tattooed last week in preparation for 33 radiation treatments. Had a little scare because the RO found a lump that turned out to be a seroma and not a swollen lymph node...but I had to have an ultrasound to find that out. Whew! First radiation treatment is Tuesday.

    Misha, I second was mellee said ~ peace and healing to you. Hugs.

    Thanks for the stretching tips. As I come out of my chemo haze of sickness, I'm going to ham n' egg my days with - Exercise n' Rads, every day. Working out has never been my thing, so this will be a big change for me.

    Support to all,

    Lillian

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  • kec1972
    kec1972 Member Posts: 269
    edited March 2019

    Lillian, glad to hear it was a seroma and not a node! Best of luck with rads, I'll be thinking of you on on Tuesday.

    Misha, wow, you're in the home stretch now! We can do this!

    Hugs, Karen

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  • Flower216
    Flower216 Member Posts: 119
    edited March 2019

    Hi! I am new to this board...as I am starting the first of my 33 treatments on March 11th (Misha-the day you are finishing). I had my simulation last week, and my dry run is on Friday. I spoke with the nurse about skin care, and at this point she said just start using Aveeno moisture repair cream (in the tub)   3-4 times daily after the first treatment, and if something else is needed later on, they will let me know. I was wondering, for those of you already in treatment, did you do something similar?

    Lillian....sorry you had that scare but its good news that is was a seroma!

    About exercise...the nurse said one of the best ways to help yourself throughout treatment is to exercise. I am a Zumba addict (and I have been doing it with modifications), but I don't know how great that will be with a sore breast! JoE777, you mentioned yoga. I never did that but I think I will now look into it.

    Hope everone has an easy week!!

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  • mellee
    mellee Member Posts: 434
    edited March 2019

    Flower216, my radiation oncologist gave me Boiron calendula cream. You can buy it on Amazon or at your local drugstore. Calendula has a lot of research behind it for its effectiveness in preventing radiation dermatitis.

    If you're willing to spend a little more, I recommend Miaderm or My Girls. Both are creams with 10% calendula in them, but they also include other beneficial ingredients. I've been using both.

    Here's more info on Miaderm: https://www.miaderm.com/ (you can also buy on Amazon)

    My Girls: https://mygirlscream.com/Calendula-Skincare-Cream-...

    If you start to get itchy or have a rash, you can put hydrocortisone cream on.


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  • beach5
    beach5 Member Posts: 15
    edited March 2019

    Misha - I finish on the 12th...we are in the home stretch!

    Flower - Like Mellee, I'm using Calendula cream and Miaderm. My RO also recently prescribed Memetasone, and they gave me some hydrogel and radiation pads to keep moisture in. I have some itching that extends across the middle of my chest, but otherwise just pink and a bit of dry peeling.

    My RO uses stickers and no tattoos. Makes the lotion process a little more difficult, but so far so good.

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  • mellee
    mellee Member Posts: 434
    edited March 2019

    I should add: you don't need both Miaderm and My Girls. I ordered Miaderm, then a friend of mine gave me a jar of My Girls because it really helped her through radiation. I don't think you can go wrong with either one.

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  • Elephant
    Elephant Member Posts: 88
    edited March 2019

    It seems that we are all getting different effects from the radiation and I am wondering if it has to do with the dosage. I saw on my file yesterday that I am getting 2.65 Gy (Grays per Wikipedia) per day for a total of 16 days or 42.4 Gy. That will be followed by 5 boost sessions of 2.5 Gy for a total of 12.5 Gy. I have now had 10 treatments and no redness or itching or anything...of course that does not mean that it will not start later.

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  • JuliK
    JuliK Member Posts: 2
    edited March 2019

    I was diagnosed with DCIS Stage 0 BC this past December while I was home visiting (I live in S. Korea). My consult, MRI and Genetic Testing is set for 3/19, surgery around 4/8 and then they are believing radiation therapy after that. I'm doing my due diligence and trying to be prepared for everything when I am in the US in a week. I will be staying with family during my treatments until I can return to Korea.
    What would you recommend I have on hand for radiation therapy? I have never had a ragweed allergy, but I know that several artificial sweeteners that are semi related to ragweed like Stevia give me migraines. I have list started from watching YouTube videos, but would much rather hear from this group what worked for you that I should consider.

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  • kec1972
    kec1972 Member Posts: 269
    edited March 2019

    Elephant, I am 8 in so far out of 16, then 5 boosts, so same as you. No redness or itching so far for me either, but I do have breast soreness and tenderness at my scar site. Also, my nipple is def more sensitive

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  • santabarbarian
    santabarbarian Member Posts: 3,085
    edited March 2019

    I think anything that feels good is fine to use but my RO said make sure there is NO alcohol in the product. And no extreme temperatures for bathing or soaking.

    I found a very pure organic Aloe vera gel that has been very nice, it's by Mountain Rose Organics. It has vitamin C for a preservative, no alcohol, and is more than 99.5% pure aloe vera. It's very watery so it can also be used for a compress (I get a small cloth wet with it, and then drape it on the irritated area for 20 mins or so and it is very relieving. Then I do an oil or cream to seal it in.

    My RO also recommends Domeboro for a compress. I recall using that product as a sitz bath after giving birth. Good for rash, irritation, sore tissue. Haven't used it yet but just passing the info along.

    Is anyone else's boob HOT? My radiated boob feels MUCH warmer than the other one. Otherise I am about like beach5, just pink, an itch I am mostly able to ignore, and pink/rough skin. No pain. I am on the second half of my treatments now... today will be 15/28.

    Wishing everyone a comfy week!

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  • beach5
    beach5 Member Posts: 15
    edited March 2019

    Juli - MY RO recommended Aquaphor, Miaderm and any Calendula cream. Miaderm is a bit expensive, all are available on amazon and local big box store. For me, Aquaphor was thick and a bit goopy (definitely need an old t-shirt to wear), Miaderm is light and absorbs quickly, Calendula was somewhere in btwn but has a bit of a funny smell. I really can't tell a difference btwn them, and am alternating.

    What turned out to be a life saver for me was a tight/compression camisole top. I know that sounds weird, but I couldn't figure out how to wear a bra and am working every day, so I tried on a compression camisole I had in the drawer (it was a little old and not so tight). I pulled it up from the bottom and it had just enough support to wear under clothes and not cause any rubbing or pain. I had a single MX.

    Santabarbarian - I am not hot at all on the rads side.

    My best this week for all.

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  • JuliK
    JuliK Member Posts: 2
    edited March 2019

    Thank you for sharing your info with me. I'll be sure to add a much as I can to my Amazon order!

    I'm large chested, so not wearing a bra in public makes me very uncomfortable! When I get into the US I'll be sure to look in my the compress type camis.

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  • mrsEO
    mrsEO Member Posts: 10
    edited March 2019

    Hi everyone! I'm 7 treatments in, 13 more to go. These posts have been a huge help in navigating this part of the journey.

    kec1972, I also have a lot of sensitivity in the nipple area - my surgery incision is on the edge of my nipple so I think I'm getting even more sensitivity from that. It isn't awful yet but I am concerned it will just get worse. While I'm mostly using pure aloe, I have been putting Aquaphor on the sensitive area before aloe, and that seems to elp make it a little better. As for stretching, my OT gave me a couple of handouts with arm and shoulder stretches which have been helpful, I can send them your way.

    Santabarbarian, I definitely have the hot boob syndrome! The heat is much more noticeable in the hours after treatment but it seems like that area is definitely warmer than the rest of my body all of the time now. Any pinkness/redness I get seems to mostly subside overnight but then comes right back after my treatments which are in the afternoon. I'm anticipating that one day soon the redness will not go away overnight, but in the meantime I'm keeping up with the aloe which seems to help.

    After my last treatment the itchiness has officially kicked in, it is driving me crazy!

    Stay strong ladies, we've got this!

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  • Naesha
    Naesha Member Posts: 62
    edited March 2019

    hello ladies,

    I am done with my 15/28 days of treatment. Today will be my 16th treatment. I am doing the left breast and lymph node. So far i have been doing good. Little bit rashes are there around the breast and my Radiation OC recommended over the counter cream Hydrocortisone to use. I haven't use it yet as i don't want any more chemicals in my body. I am using coconut oil so far. Other than that my body has been doing well. able to do workout regularly but little bit of muscle pulling feeling around my lymph node.

    Take care ladies. You have got this.



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  • Fritzmylove
    Fritzmylove Member Posts: 330
    edited March 2019

    I meet with my RO for the first time on Wednesday to discuss my upcoming rads. A bit nervous, but I figure I've already gotten through chemo and surgery, so what's one more thing?

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  • mellee
    mellee Member Posts: 434
    edited March 2019

    Hi JuliK, before spending too much on creams with calendula in them (including MiaDerm), you might want to do a patch test on your arm. People with ragweed allergy can have reactions to calendula. Not sure about the Stevia connection, but better to be safe than sorry!

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  • mellee
    mellee Member Posts: 434
    edited March 2019

    Also, JuliK, here is a bra I bought to wear during radiation when I have to go out. It was designed by a radiation oncologist to be comfortable during treatment: https://www.anaono.com/collections/radiation-thera...

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  • Rav
    Rav Member Posts: 14
    edited March 2019

    Hey everyone,

    It’s good to hear we all are going through this without big issues.

    Today was my last day for the whole breast and partial lymph nodes. Tomorrow it will be the first boost section. Four boosts ending next upcoming Friday.

    Can’t wait to get to the finish line. So far just a little pink (that got lighter/better during the weekend), and some itching (not all the time, it has been easy to handle).

    I keep applying lotion 4 x a day; exercising; stretching and wearing an old cotton t-shirt under the bra.

    Wishing everyone a smooth week.

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