Winter 2015-16 RADS

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  • El_Tigre
    El_Tigre Member Posts: 520
    edited January 2016

    Hi all,

    I'm set to do my SIM tomorrow and I was wondering if any of you lovely ladies have had any swelling prior to radiation in the armpit area and if it had hindered your radiation treatment plans? I have no nodes on my left side and still have swelling that stuck around in my armpit/upper boob area. I wondering if i should do a compression shirt before my rads start date (tentatively 1/27/16).

    Mental note: cabbage

  • PattyMeg
    PattyMeg Member Posts: 56
    edited January 2016

    Fearless, I'm on day 15 of the 16 day protocol, with 6 boosts. My skin is a mess, but my cousin who finished rads about a month ago didn't have as many skin issues and we basically have the same fair completion. I think everyone is just different. If you have any issues, talk to your RO. Mine is now checking my skin, twice a week, and called in two prescriptions. I was so happy last night driving to the pharmacy to pick up my magic creams, to be told they didn't have any in stock and I would have to come back tomorrow. Today after work, I drove straight there and guess what??? It's not ready, so I have to go back tonight. If any of you ladies hear on the news tonight that a woman from Orange County, New York got arrested for attacking a pharmacist at CVS for not having her prescription; that will be me!!! Haha. Keep your spirits up. Patty

  • rainnyc
    rainnyc Member Posts: 1,289
    edited January 2016

    Dropping in from the Fall '15 list with a trick I learned from the rads nurses:

    If you're applying cream, squeeze it out of the tube (or get it out of the jar with) onto a tongue depressor. That way, you don't have to stick the finger that's been touching your irritated skin directly onto the tube or in the jar. It's not strictly sterile, since your finger is touching the tongue depressor, but it's more sanitary and keeps the broken skin at least a little more free of contamination.

    I also have found it psychologically helpful to use sterile gloves when applying cream to my burns. Especially if peeling skin is involved, it just feels better.

    Good luck to all!

  • 1957-2057
    1957-2057 Member Posts: 35
    edited January 2016

    Had my first treatment this morning. Got my schedule 8:15 so glad of that as I wont have to miss much work. Got my special cream for the trial I am doing. It is the color of popcorn oil, I jokingly asked the nurse if it had butter in it to help me fry, lol. Smells like it has aloe in it so at least that is good and more of a gel than a cream, not greasy at all.

    I could feel the radiation, strange feeling not burning but there was a feeling in my breast. Area was tender later in the morning but feels fine now. Had a headache after but think that could have been the stress of the day. Anyhow yeah at least I am starting, 1 down 32 more to go... Oh got one more tattoo. 4 total now. Keep hearing the song in my head of Lydia the tattooed lady. Husband said he will let me know if I start to give off a glow. He is so ornery, keeps my spirits up.

    My nurse said no lotion 4 hours before or 4 hours after. I had heard before but never after..


    Best of luck to all those finishing and those starting this week. I am so proud of all you brave ladies....


    Helen

  • Suz-Q
    Suz-Q Member Posts: 205
    edited January 2016

    Mdoc2524, So sorry to hear about your mother-in-law! I hope she makes a complete recovery. It must be a real challenge for you trying to recover from chemo and then to worry about her too! (((Hugs)))

    I swear I could feel a tiny tingling in the treatment area when I had my rads this morning! Has anyone else felt like they could feel the energy going in?

    My skin is holding up fairly well. The upper area is faint pink with small splotchy areas. The breast area looks normal color. The most pink is under my arm. I'm wondering if my deodorant was getting down that far and irritating the area. One week from tomorrow and I should be on the positive side of mending! Looking forward to wearing a normal bra in a couple of weeks! Oh the little things in life that can make a person happy! So glad we are all doing this in the wintertime. It's so much easier to cover my sports bras with sweaters and I'm sure the heat would increase the uncomfortable side effects.

    Is anyone on tamoxifen or Arimidex? I'm going for a second MO consult on Thursday. I'm leaning toward taking Arimidex. I've come a long way since the begining of this horrible journey. I obsessed over all of the negative aspects of radiation therapy. I read every trial I could and assumed the worst. Now I'm looking at the next treatment step without too much trepidation! I'm actually thinking positively. I'm going into this phase with the expectation that I won't have more than mild side effects and if they are bad, that they can be managed in some way!

  • HappyHammer
    HappyHammer Member Posts: 1,247
    edited January 2016

    Rain- thanks for the tip. If you don't have tongue depressors...I have been using a small plate. Never thought about gloves. You are so smart! Sure hope your skin starts to heal up SOOOON!!

    Good news- the growth on my eyelid was not a "growth" but a clogged sweat duct and the opthamologist was able to take it off quickly and painlessly in the office. YAY! I am such a "nervous Nelly" about every little thing. Gotta' get a handle on it! Cannot live like this.

  • HappyHammer
    HappyHammer Member Posts: 1,247
    edited January 2016

    Helen...glad you are "on your way"! And, sounds like you have a funny husband who can keep some humor going. (Me, too and for DH, I am eternally grateful! Humor really IS god medicine! Hadn't heard the "4 hours after" either.

  • rainnyc
    rainnyc Member Posts: 1,289
    edited January 2016

    HappyHammer, my skin is healing. Just a few open patches left, and I've been off painkillers for a while. An enormous improvement over this time last week! Thanks...

    If I ever buy a pair of puppies, I might consider naming them Silvadene and Aquaphor!

  • Jd2015
    Jd2015 Member Posts: 7
    edited January 2016

    I feel something too during radiation. Some kinda of energy or something also a very faint smell that I can't explain. I finished #10 today! My skin looks awesome so far the scar around my nipple looks better. I'm slightly pink after treatment but it goes away quick. My nipple hurts pretty good at this point. I get sharp pains in breast every once in awhile. Don't know if it's from surgery or radiation.

    Best news of the day is my insurance will pay for bras at Nordstrom!!!

  • HappyHammer
    HappyHammer Member Posts: 1,247
    edited January 2016

    Rain-that sounds GOOD! Yes, taking pain stuff at night to be able to sleep and NSAIDS during day to help with pain so I can function....painkillers make me hallucinate though the conversations with those who really are not there..well...sometimes makes me think there really IS an alternative universe or maybe it's just Heaven..anyhoo..glad you are doing better!

  • HappyHammer
    HappyHammer Member Posts: 1,247
    edited January 2016

    JD- my nipple area has been a real issue...the RO had the techs put tape on it for my treatments.,...it was supposed to help- good gravy if it was possibly going to be worse....anyway....are they doing that for you?

  • rainnyc
    rainnyc Member Posts: 1,289
    edited January 2016

    HappyHammer, sorry to hear it. If it's any help: once it started getting better, it did so quickly. It got worse for nearly two weeks, then was stable--neither improving nor getting worse--for several days. The turning point, where I could see clear improvement, was 16 days out from the final radiation treatment. But the worst of the pain ended about a week and a half out from rads. 3 weeks today from final radiation, and have been off all NSAIDS for a few days and off the big gun painkillers for a week or so.

  • marijen
    marijen Member Posts: 3,731
    edited January 2016

    Winter Rads People - met with RO today, simulation in two weeks, start in three weeks. Total 33 treatments, no mention of boosts. We went over the risks - here they are:

    Fatigue, redness/burning/blistering of skin, breast swelling/tenderness, skin thickening, rib fragililty, chest wall pain from tightening of muscle - treatable, arm swelling (lymphedema)brachial nerve injury less than 1% probable, lung scarring, 3-5% possibility (fever, cough, shortness of breath - fully treatable, pneumonitis - treatable, loss of sweat glands axilla, radiation induced cancer - rare. No heart risk for me because radiation on right side.

    I do like the RO and her nurse. They are setting me up with PT for shoulder mobility and lymphedema evaluation. I am on reclast so hopefully rib fragility won't be a problem...? RO said it will lower my risk for recurrence by 2/3 or 66%. I requested sharpie marker with clear tape instead of tattoos - Chisandy thanks and does it itch? They say Calendula CREAM only from FIRST AID. No ointments no lotions.....but I have two bottles of Aloe, two jars of aquaphor, miaderm with lidocaine, and Vaseline!

    Shocked

  • phoebe58
    phoebe58 Member Posts: 193
    edited January 2016

    thx keepwalking - I will buy a cabbage! They said today sometimes swelling happens quickly when WBcells respond strongly to the rad irritation and rush to the area to see what is wrong -- and will likely get bored and leave after a bit, and then will get normal 3 weeks out pinkness etc. from then on. They are monitoring, but in the meantime cabbage, and I also heard saline compresses.

  • Natejordlee
    Natejordlee Member Posts: 61
    edited January 2016

    El Tigre, I did have swelling and a seroma and they will tell you of its an issue. They did tell me underarm wasn't a big deal and very common.. Good Luck.

    This thread moves so fast I cannot recall who started the conversation about feeling the radiation, I swear I feel flutterring primarily on my underarm side.

    :) Hope everyone is doing well this evening

    Lee Anne

  • El_Tigre
    El_Tigre Member Posts: 520
    edited January 2016

    thanks Natejordlee. I'm nervous for sim tomorrow, no delays 😆

  • marijen
    marijen Member Posts: 3,731
    edited January 2016

    I forgot to mention my RO said she would see me every week of the 7 weeks for 33 treatments.

  • marijen
    marijen Member Posts: 3,731
    edited January 2016

    So does anyone know about radiation lowering white blood cells? Does anyone's RO order blood work before radiation?

  • keepwalking
    keepwalking Member Posts: 147
    edited January 2016

    HappyHammer - So glad to hear that the eyelid thing was so easily taken care of and so soon (!) - always good when you don't have to go through the worry for very long. All my life I have been a non-worrier - every symptom that would appear my thought was always, "I'm sure it's nothing". But now, to my dismay, I think everything might be cancer! I hope this "shell-shock" reflex goes away with time.

    I hope your soreness goes away real soon. That nipple area is definitely problematic. My husband took me to see the new Star Wars last night. I didn't want to be uncomfortable at all, so I did the cabbage leaf before, and Yay! I was able to totally forget about it for over 2 hours of escape - sweet! My husband is not a science fiction fan, so it was so dear that he wanted to do this for me - and he didn't even fall asleep ;)

    Octogirl - Sorry to hear you have that area of skin degradation and the tightness. I hope that the cabbage leaf helps, and anyway that it goes away very soon!

    Suz-Q and Peachy2 - Congrats on finishing!

    Justmaximom - Glad to hear that things are going well with you. Sounds like you and I are the only ones doing the "no creams until needed" route. I did 7 of 21 today and also no skin problems (just general tenderness, especially the nipple).

    PattyMeg - Ugg, sorry your skin is having a hard time. I think for me this is the only thing that causes anxiety about the treatment - that it appears completely random as to who will have problems and who won't, so it seems as though there is nothing you can really do to prevent it.

    rainnyc - So glad you are finally healing! You sure had a rough time and it must be great to see the end in sight!

    Marijen - I also have ink markings and a special tape over the 3 most crucial areas. Every couple of times they redraw the rest of the lines so they don't fade too much. I usually have trouble with tapes irritating my skin, so I was concerned with this staying on so long, but no problems with it so far. I just hope it doesn't take skin when they finally take it off!

    Phoebe - Thanks for the info on the swelling!

    I was supposed to have first "during rads" meeting with RO this morning, but all the docs are at a conference through the end of the week. I really don't have any problems to speak of, so I am fine with it. I have a number to reach the on-call RO if anything comes up before my next week appointment.

  • keepwalking
    keepwalking Member Posts: 147
    edited January 2016

    Wanted to share with you ladies the treat I give myself after rads. Sitting on a bench outside the cancer center of the hospital, enjoying the view of the Judean Hills (the photo really doesn't do it justice), sipping a sparkling mineral water, and eating one square of 85% dark chocolate. Ummmmm.

    image

  • Shopgal2
    Shopgal2 Member Posts: 649
    edited January 2016

    I start rads officially today. I went back yesterday for port films (X-rays) to check that the rad plan is good. And I got to practice again with the active breathing because I am having left sided rads. I really struggled with breathing thru the tube because I had problems due to stuffy sinuses. Plus my mouth was really dry. My mo came into the treatment room in between films and asked if I wanted to take a break. She said I did so well last week at the sim and asked what was wrong. I think they knew I was having a mini panic with not being able to breathe. They did adjust the angle of the breathing tube which worked much better. The only thing that sucks is I am marked up with green sharpie which my tech told me not to scrub off too hard before tomorrow. Wtf that's what I thought I got rad tattoos for? My chest looks like connect the dots roadmap!


  • Shopgal2
    Shopgal2 Member Posts: 649
    edited January 2016

    The green sharpie marks were a bitch to get off. Prob gonna get scolded by rad techs tomorrow who told me to only wash it off with soap. I saw my ro today and she said I could wash some off. I rebelled and used alcohol pads to get it all off. Cripes that's all I need is to have an allergy to green sharpie. Bad enough I'm very allergic to adhesive. Now maybe sharpies too? Ugg. I'm first rad appt today at 8:10.

    ElTigre good luck today with sim.

    Keep walking nice view.

  • ivy2
    ivy2 Member Posts: 17
    edited January 2016

    Keepwalking- that is such a lovely photo! Chocolate seems to be an almost universal balm, doesn't it?

    Shopgal2- I start with the sim and breath training on Monday. Thanks for sharing your experience! My son sent this to me to cheer me up:

    image

    I admit it makes me feel better.

  • MaggieMae123
    MaggieMae123 Member Posts: 38
    edited January 2016

    Hello, I would like to join. I start February 1st and get 6 weeks of treatment.

  • Suz-Q
    Suz-Q Member Posts: 205
    edited January 2016

    Keepwalking- Loved your photo! Thank God for chocolate. I couldn't have made it through without it!

    ivy@-Loved the comic!

    I have one big smile on my face today, I had my last treatment this morning. I'm so HAPPY to be DONE!!!

    I'm going to do fat transfer in the fall after most of the healing is done. I'm doing it to improve the skin quality and fill the lump dent. I've read much about fat transfers ability improve the skin and tissue fibrosis after radiation.

  • lindab142
    lindab142 Member Posts: 105
    edited January 2016

    Not feeling well today. Had pain and heat in treatment area most of the night; couldn't sleep.

    I have radiation reds and now the area around my nipple is grayish and hard. I see the RO after my treatment today. He added 5 boosts, so my new total is 21, and I think I'm on 9 or 10. I want to ask if we can just do 11 + 5. I'm not sure this is for me.

    I also can feel "something" during and after radiation. After I feel a little dizzy trying to get off the table and yesterday I almost left without putting the gown back on. After radiation I feel burning from the inside. I'm trying to visualize cool blue tender drops going on my skin.

    Keepwalking - love the picture. I've always wanted to visit Israel; was trying to save money and then stuff happened.

    Suzy - congrats on finishing.

    ivy - the cartoon is cute - thanks for sharing.

    I'm only going to work a few hours today, besides not sleeping, I'm feeling a cold, bronchitis and heartburn.

    Hope you all have a better day,

    Linda

  • marijen
    marijen Member Posts: 3,731
    edited January 2016

    My RO told me radiation would reduce the chance of recurrence by 66% but now I am wondering 66% of what

  • justmaximom15
    justmaximom15 Member Posts: 264
    edited January 2016

    1957-2057, here's my experience with feeling something a couple of times. I wear a short hospital gown type short shirt that ties in the front. I take my left arm completely out and my left breast (treatment area) is completely uncovered. Usually one of the techs will drape the other half of the gown over my right breast. Twice, when the radiation was coming from underneath and aiming left to right, I felt some kind of energy and the right side of my gown fell off. It was strange.

  • Suz-Q
    Suz-Q Member Posts: 205
    edited January 2016

    Sorry to hear you're feeling so bad lindab143!

    marijen, For example, if your recurrence rate was 30%, 66% of 30 is 19.8, so you would be left with a recurrence rate of 10.2% after treatment. I would be good to know what number your RO is talking about!

  • marijen
    marijen Member Posts: 3,731
    edited January 2016

    Sus-Q they couldn't give me an oncotype dx because my primary tumor is occult and for some reason there is no Ki67 test on my pathology, so I don't know what my recurrence rate is. But I will ask about it again. Thx for your help

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