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Radiation October 2018

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RiRi11
RiRi11 Member Posts: 70

Hi! I do not see an Oct thread, so I will start one

I finished chemo on Sept 4th and start radiation Oct 1st. (20 + 4 boosts) I had my mapping and tattoos this past Wednesday and now Im just relaxing and waiting for next mont

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  • Spoonie77
    Spoonie77 Member Posts: 532
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    Hi RiRi - Congrats on finishing Chemo. I'm still waiting on a second opinion of my Onco Typing tests before I make my final decision on Chemo. Unfortunately, I was in the "grey/intermediate" area of the TailorX Study. I'm Pre-Meno and super young so I want to be SURE I'm making the right choice before I skip it. My MO says I can but I just need peace of mind. Sure you know all about that.

    Good luck with your first Rads! I hope all goes well and smoothly. Fingers crossed for ya!

    My Simulation will be this Friday (9/28) and then Rads will truly start the end of the first week of October, if there aren't any hiccups.

    What have you done to prepare? Have you gotten ahold of any tamnu and/or special oils? Did your RO RN give you anything to begin applying beforehand? My RO RN said before I start they'll give me a cream that's a mix of Calendula and I forget the other oils name.

    I'm thinking of also ordering the coca butter with Vitamin E. That's what my SO recommened. My Homeopath (for my other chronic illnesses) suggested just using straight Vit E oil. I already have a cushy seatbelt cover, along with my Aquaphor, J & J hydrogel dressings/gauze, cotton/front close bras from my Lumpectomy. Still have to pick up some Tom's Deodorant to replace my usual. So I think I'm close to being prepared with supplies, LOL.

    In my brain I'm planning rid of caffiene and drink tons of water prior to and during Rads, but let's see if my will power cooperates! Ha! :)

    Wishing us all the best of luck and healing!

  • RiRi11
    RiRi11 Member Posts: 70
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    Hi Spoonie!!

    I was also in the grey area as well and my MO suggested chemo because of my age (was 42 at fhe start of chemo, just turned 43 this month) the chemo I was on was considered ‘light’ I only lost 25-30% of my hair.

    The side effects were worse towards the end. I opted out of the port and received my treatments through IV, I ended up with deep vein blot clots... that being said, I’d do it again. My MO explained that our bodies recover from chemo better when we are younger and if there was the tinyiest cell left, she would rather hit now than wait for recurrence. Im being treated at Memorial Sloan Kettering in NY and from what I read on these boards... they are the only ones that offer CMF (the chemo I was on)t

    I have not done anyrhing to prepare for radsScared . Ill pick up the creams they suggested this week.

    Good luck and healing vibes to you :)

  • Spoonie77
    Spoonie77 Member Posts: 532
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    Can I ask did you have the ONCO run? If so, what was the score?

    I'm glad when you decided for Chemo that your MO was able to work to give you a lighter course of therapy and peace of mind! That's so very important.

    As far as Rads goes, I'm paranoid about skin issues due to all of my other chronic illnesses I deal with. That's why I'm trying to give my skin a head start so to speak! If I can help it get stronger and more fully hyrdrated going in, hopefully that will help me stay ahead of the worst of the side effects. Fingers crossed!

  • RiRi11
    RiRi11 Member Posts: 70
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    i had an Oncotype Dx done. I scored 18.

    I read horror stories on skin conditions as well. I will pick up some vt E... and omg I never even thought anout the seatbelt! This is why this website is great!! Thank youSmile

  • Spoonie77
    Spoonie77 Member Posts: 532
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    Mine was 17. That's why I am asking questions. Many in our ranges have chemo, due to age and tumor grade etc. I'm worried that I should be doing chemo. We'll see. Thanks so much for sharing. I really appreciate it.

    Oh and you're welcome about the seatbelt!!! :) I learned it from one of the sticky posts in the "Before During After Rads" forum. LOL just passing it on!

    This is the sticky: https://community.breastcancer.org/forum/70/topics/829567?page=1

    Also, might want to check with your RO about your deodorant. Guess the metals/aluminum in most of the usual ones can decrease the effectiveness of rads. That's why I'm getting Tom's brand. Was told by RO to pick it up - gotta get the metal free version.

  • InnaB2018
    InnaB2018 Member Posts: 766
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    Hi, guys! I am in the same radiation boat. Will start on October 8. Had my mapping session today. I was told that I am in the perfect gray area, but decided to go ahead with the rads for the piece of mind. I am 46, had a macromet in one lymph node and the beginning of LVI. So I decided i’d rather do an extra treatment, then be sorry later. My RO said to use CeraVe cream and something else she will prescribe for me. Forgot the name of it, but will post it when I get it. Good luck to us

  • ingerp
    ingerp Member Posts: 1,514
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    Hey ladies--popping in from the August group. My RO only okayed calendula cream and Miaderm (which is mostly calendula cream but much more expensive), plus hydrocortisone cream when the itching starts. She said I can use whatever I want (Aquaphor, Desitin, . . .) after treatment but not while it's going on. My skin is really not too bad--worse on my chest area, where I got a lot of sun growing up. Other than that I just finished #25 of 33 and I've only started itching a little bit underneath in the last day or two. She said they've changed their recommendation re: deodorant since my tx two years ago--the latest research indicates it's fine as long as you don't put on a huge amount. Last time I had a little fatigue (like really only 2-3 days, and usually after I'd had a super big day) but this time I haven't really noticed it. I have been getting back to the gym since chemo and I think that's helped.

    The good/bad about rads is the schedule--not fun going every weekday but it *is* kind of fun having another one behind you every day. You can tick them off quickly, and the time will probably fly. Well--maybe not fly, but before you know it you'll be done with 5, and then 10, and then. . . .

    Hang in there. It's really not too bad.

  • domzie30218
    domzie30218 Member Posts: 47
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    Hello Ladies! Looks like I'll be part of this October group. I'll be starting right on the first. I have 33 to go. I was given Hydrogel and was also told to put Calendula cream and pure avocado oil at night. I'm a bit nervous as I just had my exchange surgery on August 30th. I'm hoping not too much skin reaction and extracapsular contracture. May we all get through this hump with minimal SEs!! God Bless!

  • journeyforward
    journeyforward Member Posts: 32
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    Hi everyone,

    I will be part of the October radiation group. I completed my last chemotherapy treatment on Sept. 19 and I'm still recovering from SE's of chemo. It's time to look ahead to the radiation part of treatment and I meet with the oncologist Oct. 2 for the 21 radiation treatments to begin week of Oct 22. I was told to apply Calendula cream but I want to know why such a variety of different creams / oils are advised? I'm sure it's because "everyone is different" and responds differently. I'm sure I will ask that question at my appointment. Like Domzie30218, I am hopeful for not too much skin reactions. Oh yeah, and I will continue to receive my Herceptin infusion every 3 weeks until next June 2019. I'm looking forward to successful treatments for everyone. Blessings to us all!

  • ingerp
    ingerp Member Posts: 1,514
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    Different ROs have different recommendations for lotions to use. Mine only allows calendula cream and Miaderm (which is mostly calendula cream). She said after I’m finished I can use whatever I want (Aquaphor, Desitin, . . .). They tend not to like the thicker creams during treatment because they can interfere with the radiation. FWIW, my skin has held up pretty well, although my chest area is pretty itchy.

  • CarolAnnieLumpLump
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    Hello all, I will be joining you for the October radiation group. I go 9/27/18 for my simulation and will have my first treatment on 10/10/18. My husband and I are taking a nice long weekend vacation in northern Michigan before rads since like all of us our summer hasn't been much fun this year. My RO RN said they have lots of lotions to try. Neither RO or RN mentioned anything about deodorant, I am adding that to my list of questions. I will be having 33 treatment the last 5 of which will be boosts. My oncotype score was 10 so I didn't take any chemo. Wishing us all the best.

  • Teenstar
    Teenstar Member Posts: 7
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    Hi journey,


    I finished chemo the day before you and will start radiation on the same day as you. I hear that compared to chemo it's a breeze, but that the daily visits become quite a drag.

    Hoping for all here that we come though it with ease. I met someone tonight who had a lot of burning the week after. I really hope that doesn't happen for anyone in this group. I find trying not to look too far ahead to behelpful but anxiety does creep in.


    Looking forward to hearing from others on how they respnd

  • Misstic
    Misstic Member Posts: 50
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    I'm stade IIIC (recurrence) with 6 tumors and one node involvement. I finished my chemo 22th July. Surgery 29th August. Not even one cancer cell in my mastectomy and in my node was "back to normal" (I'm still trying to figure out how a node could be cancerous and not get scar tissue). So 100% tumoral response.

    Simulation will be 11th October and my rads will truly start 16th October.

    I read several clinical studies and decided to order 2 creams in Italy which were proven to keep 95% of patients under or equal grad 1 regarding radiotherapy dermatitis.

  • Danaqtr
    Danaqtr Member Posts: 1
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    what are the creams you ordered from Italy

  • Misstic
    Misstic Member Posts: 50
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    Here is the clinical study about preventing the acute skin side effects of radiotherapy: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3606400/ (the authors are Italians but the text is in English). When reading this study, please be aware that the volume of the breast is important regarding skin toxicity of radiotherapy (biggest breast, biggest side effects). All the panels studied were not the same about this important point.

    There is another one in France about the Mepitel Film which actually use in phase 1 or 2 clinical study at the Institut Curie and it is said with great outcomes. But i can't find the text.


  • RiRi11
    RiRi11 Member Posts: 70
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    ingrep, did you notice any change in breast size? I had a coworker mention a friend whose breast shrunk 2 cup sizes (gotta love Here say horror stories) I get quite a few from coworkers who know someone who knows someone..... Id rather hear from someone who has been through it

    Welcome All! Trying to catch up on here... I have been so tired this week. I thought Id have my enegy back by now but Im still taking naps and going to bed earl

  • Golfnut33
    Golfnut33 Member Posts: 3
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    hi all

    Guess I’ll be joining you all for a fun October! Meeting with RO today and expecting to start radiation soon after for 4 weeks. Just keen to get this whole thing done before my follow ups start (in November) for the other side …

  • ingerp
    ingerp Member Posts: 1,514
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    RiRi11--I really have not noticed any size changes either time. I was told the treated breast might harden up a bit, and maybe even look a little perkier than the untreated breast, but everyone's breasts are different sizes, and I had a huge chunk cut out in 2016 from the left side so I'm nowhere near symmetrical anyway. That said it was never important to me either. Two years ago my RO asked me if I was considering plastic surgery to make the other side look similar (I guess a reduction) and I asked her how obvious it would be, like if I were dressed up and going out would anyone notice and she said, "Oh of course not." I can't say I look at myself naked much, and if it's not apparent when we're clothed then who cares? (BTW--hubs has never had a problem with it either. Thinks it makes me look more interesting. :-) )

  • InnaB2018
    InnaB2018 Member Posts: 766
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    Misstic, thank you so much for the study! I am a little confused about the two creams. Did they put one on top of the other? Or just waited for the first one to get absorbed, and then used the second one? Also, which 2 specific ones did you order? I found Beta Glucan cream in the US, but it’s not cheap, obviously.

  • InnaB2018
    InnaB2018 Member Posts: 766
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    In her book Breasts: The Owner's Manual, Dr. Funk recommends the following regimen in order to minimize the skin and muscle tightening that leads to capsular contracture:

    Singulair 10 mg, one tablet a day for 3 months starting day 1 of radiation

    Trental 400 mg 1 tablet 3 times a day for 6 months starting one week after radiation

    Vitamin E 1200 IU one tablet a day for 6 months starting one week after radiation.

  • RiRi11
    RiRi11 Member Posts: 70
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    ingerp, Thank you for the info. Its funny about the perkier one, when my RO mentioned that to me I jokingly said... ill have one 20 yr old breast and one 40 yr old breast!! ;

  • Me2018
    Me2018 Member Posts: 12
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    I finished 8 months of chemo in August. I had a left side mx in Sept (9/10). I had my simulation yesterday. I probably start radiation some time next week. I will have radiation 2x/day for 22 days (44 treatments). I haven't even started yet, but I am so ready to be done with all this mess. I also start monthly zoladex shots & Tamoxifen treatment during radiation as well.

  • Misstic
    Misstic Member Posts: 50
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    InnaB2018

    I ordered the Radioskin creams.

    • Cream 1 to set AT LEAST 2 hours BEFORE the radiotherapy session. The most effective ingredient I see (except various moisturizers) is Niacinamide. There is also some algaes' extracts but no idea of why they are used.
    • Cream 2 to set immediately AFTER the radiation. Contains also Niacinamide and Aesculus Hippocastanum which is known to improve blood circulation. Many more ingredients to explore.

    The complete ingredients' lists of these creams are available here: https://www.eucare.it/prodotto/radio-skin1/ and https://www.eucare.it/prodotto/radio-skin2/

    I think I will use the cream1 3 hours before my sessions.

  • Spoonie77
    Spoonie77 Member Posts: 532
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    Afternoon ladies! <waves>

    Just wondering how did your simulations go? Did any of you have gated radiation because of the risk to the heart?

    My simulation is on Friday. They booked me for 4 hours at Abbott. I'll be having gated rads for 6 weeks. Not sure about boosts. I don't remember anyone mentioning that, but there was so much info at that first appt! So, it's on my list of questions for Friday.

    Thanks Misstic for sharing the info on the creams. Due to my other health conditions that's a big concern for me. I'm going to give them a gander.

    Hugs and good luck to all... Heart

  • Spoonie77
    Spoonie77 Member Posts: 532
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    @Me2018 - ugggh I'm so sorry you have to go through rads 2x day but I am thankful that that will help kick the beasts butt! I hope you have some great creams and hydrogel and soft pjs stocked up if you need them. Will you be going in the morning and in the evening then?

    Wishing you the best as you start in on the trek. (((Me2018)))

    Also, I'm so relieved you added in that you are taking Tam during rads. Brain fog apparently set in during that part of my MO appt so when I saw your post I called to double check when I was supposed to start mine. They told me definitely during rads! Without your post, I would've been delaying and waiting till after! YIKES! I totally misunderstood and that's not like me at all. Anyway, long story long....thanks muchly!


  • GreenHarbor
    GreenHarbor Member Posts: 187
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    Hi Everyone... I’m a newbie here; it’s great to “meet” you alll! I start radiation on Monday- 15 treatments and then 5 boosts. At my mapping appointment, my CT scans were done both face up and face down, since my tumor was on my left side and near my chest wall. When I left, the RO still hadn’t decided which position they’ll use. The nurse gave me calendula cream to use. While I’m a little nervous about the radiation, I’m mostly just ready to get on with this

  • moderators
    moderators Posts: 8,091
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    Hi GreenHarbor! We want to welcome you to our community, and wish you the best with your radiation therapy. We hope your treatment goes well, and that you find support within these boards!

    The Mods

  • cc738nj
    cc738nj Member Posts: 49
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    Hi all,

    I'm coming over from the June Chemo group and see some familiar names (and nice to meet the new ones). I finished TC chemo mid-Aug, did simulation early Sept. I'm 10 treatments into my 32 (25 then 7 boosts). I am getting gated radiation, image guided 3D. I have 7:15 am appt every day and I'm out the door by 7:45 at the latest, even when I see the RO (1x week) so I can make it to work by 9 which isn't too bad.

    My ROs skin regimen is Aquaphor + cornstarch 3x day for 1 week then after that a steroid prescription cream plus aquaphor & cornstarch 3x day for remainder of treatment and 3-4 weeks after. So far just a little pink but barely. My challenge is that my lumpectomy scar is right at the bottom of the breast so right in the crease which is tough but the cornstarch keeps the skin from rubbing together. My RO says only Toms deodorant if you must and would prefer only cornstarch.

    Dx 3/23/2018, IDC, Left, 1.5 cm, Stage IIA, Grade 2, 1/1 nodes, ER+/PR+, HER2- (FISH) Surgery 5/18/2018 Lumpectomy: Left Chemo 6/11/18 - 8/17/18 (4x TC) Radiation Therapy 9/17/18 - 10/31/18 Hormone Therapy Arimidex 5 years starting 11/1/18. BRCA 2 mutation ovary removal surgery approx. Jan/Feb 2019

  • Frog-on-the-lilypad
    Frog-on-the-lilypad Member Posts: 159
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    Hello ladies,

    I finished chemo on Aug 13, had surgery on 6th sept. Have already met my RO and have had the mapping and CT scans done last week, also done with the radiation orientation. Will hear back with start date in a day or two. I will have 15 radiation to the whole breast and 5 boosts. The nurse gave me a travel pillow and showed me different ways to prop myself if pain in breast or underarms. She asked me to not do any heavy lifting. Avoid swimming in chlorinated water. Also mentioned not to take any Vitamin C supplements.

    She also mentioned that ladies doing it after chemo and surgery will be worse hit by the radiation than only surgery followed by radiation.

    Hi Inna B. Thanks for the inputs Ingerp.

    All the best.

  • Spoonie77
    Spoonie77 Member Posts: 532
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    Just want to second what's been mentioned previously, as they were my RO's guidelines/statements too --


    1) No antioxidants in supplement form (via food, aka oranges, apples, etc is fine) - this means most multi-vitamins & vitamin C. It reduces the effectiveness of rads because of the free-radical element.

    2) Toms Deodorant only, if you must. Metals in most deodorants also reduce effectiveness.

    3) Breast size can shrink, to varying degrees per person, or not at all.


    Anyway, had my mapping & orientation last week. Have my first treatment on Wednesday.

    My center used small tegaderm circles to cover the "x-marks the spot" on my ribs and over my breastbone. I'm curious, what did others receive? Do they still use tattoos at all?

    I ask, because due to my cleavage size, there's just no way that tegaderm piece stood a chance to stay put for a few days. LOL. It was toast after day one, no matter what I tried. I put sharpie on the remaining mark but that also rubbed away in no time.

    Any tips to keep the marks sticking around?

    The ones on my ribs are stuck in place with no wobbles at all. :)


    Wishing you all the best as you head in to your first treatments. We'll get through this together!