Summer 2015 Rads

Options
1…457910…56

Comments

  • atlmom
    atlmom Member Posts: 12
    edited June 2015

    Joining the rest of you at Radiation Summer Camp.

    Gatomal Sorry it's been so hard for you. I didn't like having the machines so close either. But as others have said, anything that can lower my risk of recurrence is OK with me. If I could, I would personally zap every single one of these cancer cells with my bare hands. What helped me was a form of meditation. Before my diagnosis, I had never done any meditation. But I read somewhere that it could help with nausea, so I started practicing guided meditation every day for about 15 minutes. What works to relax me the most is to close my eyes, focus on my breathing, and picture my dog on my lap. i imagine his head on my lap, and I think about the fur on his neck and his cute floppy ears. For radiation therapy, as soon as I lie down on the table, I shut my eyes and think doggie thoughts. I don't open my eyes again until they say they are done.

    Other tips...

    Miaderm is expensive, but I'm glad I ordered it. It feels absolutely great on my skin.

    Look at yourself in the mirror every once in a while. While out grocery shopping, I casually hung my sunglasses on the neck of my T-shirt. Didn't realize until I got home that this made my T-shirt hang low enough in the front to show off gobs of ink marks and round plastic dots. OMG!!! How totally EMBARRASSING!!! i just about died thinking how I must have looked to everyone in that store.

    Cheers...atlmom


    · Share on FacebookShare on Twitter
  • april25
    april25 Member Posts: 772
    edited June 2015

    atlmom --- If anyone noticed, maybe they thought you just had some interesting tattoos?

    I was running about for weeks with one sticker right at the base of my neck where pretty much nothing could hide it (I sometimes tried wearing a scarf, but even that would slip and not cover it). I've pretty much given up looking half-way normal, what with my wig and lack of eyebrows and all...! At least the sticker is gone now... wonder why they made me wear it after the sim but let me take it off after the first session??? geesh! Right now I only have two stickers with Xs on them on my right and left sides, mostly covered by my bra or my clothing... nothing too obvious, thank goodness!

    · Share on FacebookShare on Twitter
  • SweetHope
    SweetHope Member Posts: 439
    edited June 2015

    I was hoping to be among those who do not get a reaction to Rads, but yesterday I started to get an itchy, radiation rash on my sternum and clavicle. Damn! Aquafor helps, but now I have to wash that goop off before treatment today, and I am sure that will irritate it more. The skin is not broken, but it itches bad!

    I only have 3 whole breast rads left, then 7 boosts.

    I sure would love to hear from someone who didn't get an adverse reaction. I'm losing faith in the thought that that is possible.

    · Share on FacebookShare on Twitter
  • SweetHope
    SweetHope Member Posts: 439
    edited June 2015

    Valentine, I also had a CT scan with my simulation. I am doing IMRT because I am a lefty and it avoids my heart. The CT scan shows your ribs, lung, and heart distance from the tumor bed. There are many specialists behind the scenes that calculate your treatment based on that CT scan. I have a medical physicist and dosometrist, along with others. I have been shown my CT scan with the overlay of the radiation fields (23 different positions in all). It is fascinating to see how extensive the program is to prepare a patient for radiation therapy. It is not a simple process.

    · Share on FacebookShare on Twitter
  • live_deliciously
    live_deliciously Member Posts: 346
    edited June 2015

    i had a scan too. I think they called it xray but it was in the machine that sends you in on the table and circles around you . Then got the tattoos. They didn't put any stickers on me ? We leave for vac Thursday then get back and start rads. July 6

    · Share on FacebookShare on Twitter
  • dragonista17
    dragonista17 Member Posts: 50
    edited June 2015

    I finally got my start date - July 6. Had the ct scan, tats, body cast done last week. I'm not looking forward to any of this, but sure am looking forward to being done with it! I'll be having the short course of 21 treatments (for a variety of reasons). One more doctor's visit this week in preparation, to be able to manage another illness in conjunction with the rads treatment. It's always something, isn't it... I guess this will be a long summer, but then I think about how I would have had an awful time trying to get to treatment during the snows of the past couple of winters. (I know, my mind is wandering these days lol). Trying to stay positive and hoping to avoid any complications. Learning a lot on this forum and grateful for it.

    · Share on FacebookShare on Twitter
  • pboi
    pboi Member Posts: 663
    edited June 2015

    Hi ladies...

    I'm almost two weeks pfc and getting ready for radiation. I have my sims this afternoon and am so nervous!!! I read a little on here about what I might expect, but still anxious!

    PB

    · Share on FacebookShare on Twitter
  • pboi
    pboi Member Posts: 663
    edited June 2015

    Hi Ladies,

    I have radiation coming up soon. Had my sims today, which I was very nervous about, but it went fine. They made a form for my head and arm, got some sharpie marks on my chest, had a CT, and 4 tiny tattoo marks. I'll be getting 25 treatments and start July 6.

    PB

    · Share on FacebookShare on Twitter
  • RV6gal
    RV6gal Member Posts: 331
    edited June 2015

    I had scans with my sim too. Sometimes they had to take more X-rays during treatment especially on Mondays as my X would fade..... (I didn't have stickers either).

    This is going to sound crazy but the one thing I liked about going out everyday for radiation is that I went out everyday. The 2 to 3 weeks following radiation were the toughest for me. Now I am less sore (still get some twinges of pain) but I am struggling to get going it seems. I think one of my troubles is the hot flashes from tamoxifen. I hate them! They make me feel unclean all the time.....blah! I'm hot in everything sooner or later.

    Sweethope - my clavicle area got red and itchy but didn't really give me a lot of grief. It has faded almost completely now but my chest area is still dark and a little red still. Can you put a lighter type of moisturizer on so you don't have to was it off before treatment? Washing it a lot can irritate it for sure.


    · Share on FacebookShare on Twitter
  • Gatomal
    Gatomal Member Posts: 483
    edited June 2015

    walking home now from treatment number 4 out of 25. Feeling okay. Slight clavicle tenderness, nerve zings around nipple, a bit tired. That could be from the four miles per day. Getting easier, but it's better to be in and out. Today I waited 90 minutes for my treatment. Hate that. Back is hurting too. Prob from the exercise

    · Share on FacebookShare on Twitter
  • pboi
    pboi Member Posts: 663
    edited June 2015

    Been reading this thread taking note of what creams I might need to buy in preparation for rads. But after my sims appt, the nurse told me to use Fruit of the Earth 100% Aloe Vera gel twice a day starting now, and then use it 3 times a day when treatment starts. That's it, she said I wouldn't need anything else. And said they may add other creams down the road as it became necessary.

    I'm wondering if the aloe alone is enough to start with? Anyone else been told this or do this?

    PB

    · Share on FacebookShare on Twitter
  • Midgiemoon
    Midgiemoon Member Posts: 174
    edited June 2015

    Just a quick question, how long do the sims take? Is it all in one visit? I have a 90 min appointment with my RO in 2 days, but I don't know if the sin is happening or not since I see the MO first to discuss my oncotype score first...


    Thanks! ~midfield


    · Share on FacebookShare on Twitter
  • Hopeful82014
    Hopeful82014 Member Posts: 3,480
    edited June 2015

    Hi - Thanks for starting this group, Sweet Hope.

    I am reluctantly joining your club. Definitely NOT one I want to join as I'm really anxious about RT but I know I'll be in good company. with you.

    I had my simulation last week and start actual treatment this Wednesday - 33 sessions. The tumor bed is on my left side so there may be some modifications to treatment in order to avoid my heart.

    I refused the tattoos and instead have marks with Tegaderm circles covering them. My skin is very, very fair (especially on my chest) and there's no way those tattoos wouldn't have stood out. I DO NOT want any more permanent reminders of this than I already have, thank you very much.

    I've been prepping my skin for a while - lots of lotion and Emu oil every day when I massage the scars. My RO and BS also started me on PT a couple of weeks ago - a combination of LE education/prevention and exercises to counteract tightening of the underlying muscles due to radiation. I'll have more PT afterwords to deal with fibrotic changes. I was also told by the RO to avoid exposing that area to the sun prior to RT. Did anyone else hear that?

    At this point I am so sick of people who act as though radiation is nothing - just a little inconvenience. I'm hoping to sail through it (who knows - I could get lucky...) but am really trying to be realistic about its effect on my energy levels as well as my skin and other tissues. My RO keeps saying I'll do great. I sure hope she's right!


    · Share on FacebookShare on Twitter
  • april25
    april25 Member Posts: 772
    edited June 2015

    I think my sim took under an hour...? And I might have had a CT during it... I was in one of those tube-things, anyway! They really weren't telling me that much. I think they were explaining some things, but since they do it so often, they probably don't have a clear idea of everything a total novice would need to know!

    I didn't get any moulds made. Just got the 4 tattoos and some other marks that had the "stickers" (which I guess were tagaderm circles! -- thanks Hopeful82014!) over them. I wore those around until my first session, where they placed two other Tagaderm circles, which I still have on, and let me remove the 4 previous ones.

    Hopeful82014 -- Good for you for refusing the tattoos! I don't really see why they couldn't just use sharpies and tagaderm circles on everyone. But for me, I figured I already had incisions and a few moles that could disguise them... although the tattoos are definitely a non-mole-like color! I know that when I WANT to scrub off the marks I'm allowed to erase, it's never easy--so I'm sure they would be permanent enough with circles and being careful of the area...

    And I hear you on all the "radiation will be a breeze" comments. Sure, we all HOPE

    pboi -- I was told to use 99% Aloe Vera, non-alchoholic, 3x a day from day one. Plus Calendula cream. I haven't been doing it 3x a day, though... just 1 or 2x... Mostly because the mornings I can't put on anything 3 hours before treatment, so it's just afternoon and evenings that I've got some time to put lotion on. My skin got super-dry from the very first treatment, but the lotion definitely helps with that. No other effects yet... but I'm only in my second week of rads and they warned me nothing much should happen until after a few weeks...

    RV6gal -- I rather like having to get dressed and get out every day, too! After months of staying in during chemo and right after surgery, it's nice to get out and run some errands and get a bit of exercise...

    Hopefully the fatigue won't kick in to make it a total chore, but so far, so good...


    · Share on FacebookShare on Twitter
  • molly1976
    molly1976 Member Posts: 403
    edited June 2015

    I also only have sharpie & stickers, no tattoos. I would almost prefer the tattoos because I feel anxious about those stickers coming off since it's a million degrees here and I'm trying to keep exercising every day.

    I've had 4 of 20 treatments and so far can't tell at all. It doesn't even feel like anything is happening. When did most of you start to notice skin changes?

    · Share on FacebookShare on Twitter
  • RV6gal
    RV6gal Member Posts: 331
    edited June 2015

    HI Molly1976 - I started noticing some slight skin changes around TX #15. I would say my skin stayed pretty good up to about treatment #21 or so. I only had 25 in all but the skin changes magnified quickly during my 5th week.

    April25 - I found the fatigue more manageable when I was more active. I heard that from others too at the treatment center who were getting radiation for other cancers as well.

    Hopeful82014 - Sorry you are joining this club but I wish you the best during your radiation treatment. I kept up with all my exercises during radiation up until the last week when I just couldn't move the skin on my chest anymore. I probably made the situation worse as I was favoring my right side for about 3 weeks after radiation was complete. The good news I think is the exercises I did do helped me recover more quickly once I got my arm moving again. It is still a bit tight/tense but I will keep up with those exercises. My RO didn't mention the sun exposure but it makes total sense as you don't want to dry your skin anymore then it has to be. My skin is fair and I was very worried about radiation. I think I came through it fairly well and I wish the same for you.

    · Share on FacebookShare on Twitter
  • Suedogs
    Suedogs Member Posts: 1
    edited June 2015

    I finished my Chemo on 11 June. My Inc said I have to wait 30 days before radiation for the Chemo poison to get out of my system

    · Share on FacebookShare on Twitter
  • molly1976
    molly1976 Member Posts: 403
    edited June 2015

    Thanks, Wendy! That gives me hope I might get through it mostly unscathed since I am only have 20 total. The dose is higher each time than in the longer course, though, so I guess we'll see.

    · Share on FacebookShare on Twitter
  • pboi
    pboi Member Posts: 663
    edited June 2015

    Midgemoon - my sim appt lasted about 1 1/2 hr. But I did spend some time talking to the nurse about skin care.

    Wendy - when you mentioned exercise, are you talking about exercise in general or exercising your arm? I'm worried about fatigue that is bad for some people, and would like to do what I can to minimize that.

    I tried to get out of getting the tattoos, but the nurse mentioned they'd be really small, and that in the event I might need radiation again in my old age, it would be good to know where I had received it in the past. So I gave in, they are tiny though.

    PB

    · Share on FacebookShare on Twitter
  • atlmom
    atlmom Member Posts: 12
    edited June 2015

    april25 - LOL. I can only hope they looked like tattoos. The little plastic circle thingies look very odd. You're right though. Considering I still don't have normal eyelashes or eyebrows, and considering I am still wearing a large hat to cover up the fact that my hair is less than half an inch long....who am I kidding? Heh heh.

    · Share on FacebookShare on Twitter
  • atlmom
    atlmom Member Posts: 12
    edited June 2015

    Wendy and pboi,

    The nurse told me something similar. She said that the most important thing to do if I wanted to stave off severe fatigue was simply walking. This was great to hear, since I have a dog and my main form of exercise is talking him for a walk twice a day. I walked him all through chemo, although I cut down the distance by half and walked much more slowly. There was never a day when I didn't manage to at least go around the block. I always felt better afterwards, even though during chemo I had to rest on the couch to recover after the walk. So glad that phase is over!

    I also do two stretching exercises that I was given to help loosen the muscles in the arm and shoulder area. These stretching exercises seem to be helping, even though I am only doing them twice a day, instead of what they recommended, which was 3 or 4 times a day.

    Doing Miaderm for the skin. Just like the stretching exercises, I'm only managing twice a day, instead of the recommended 3 or 4 times a day. But even with only twice a day, the Miaderm feels great, and so far I haven't had skin problems. I'm only in the second week, so that could change.

    · Share on FacebookShare on Twitter
  • Valentine99
    Valentine99 Member Posts: 75
    edited June 2015

    I had 25 treatments. My skin started getting dark in spots pretty soon, but I didn't start having breakage until last week. Today was my last treatment! WOOHOO

    I was also told to avoid sweating as much as possible for the next couple of weeks.

    Good luck everyone!


    · Share on FacebookShare on Twitter
  • Hopeful82014
    Hopeful82014 Member Posts: 3,480
    edited June 2015

    Huge congratulations, Valentine!!! You have traveled one very long road to get here - I'll bet it feels great to be done!!

    Do be careful with your skin (esp. in the sun) as well as avoiding sweating (which is one I'd not heard) - it will need to be babied for a while.

    Enjoy your freedom!

    · Share on FacebookShare on Twitter
  • Valentine99
    Valentine99 Member Posts: 75
    edited June 2015

    Oh I plan to :) If I can find a bathing suit top that fits I want to go for a swim one evening! So glad to be done with the radiation stickers.


    · Share on FacebookShare on Twitter
  • Hopeful82014
    Hopeful82014 Member Posts: 3,480
    edited June 2015
    That sounds so good!
    · Share on FacebookShare on Twitter
  • RV6gal
    RV6gal Member Posts: 331
    edited June 2015

    Congratulations Valentine99 on finishing rads! I hope the skin breakage is not too bad!

    They never mentioned to avoid sweating specifically to me either but that is definitely what caused the friction that made my skin breakage worse. I also used a fan on the area whenever I could. It really helped.

    pboi - I was given specific arm/shoulder exercises as frozen shoulder can occur during radiation I was told. I wanted to keep up with those exercises all the time but my skin just became so raw and irritated,that I just couldn't. I started again as soon as I could and it is helping with the tightness that I got there after radiation was done. I also walk too but need to get doing more. Unfortunately, I have tons of weight (20 lbs gained through chemo plus 40 I needed to lose previously anyway).

    · Share on FacebookShare on Twitter
  • dragonista17
    dragonista17 Member Posts: 50
    edited June 2015

    I don't start rads until July 6, but was told to get an aloe plant rather than the stuff in a bottle and to apply the "juice" 3x/day. There's apparently a very tiny chance of having a reaction to preservatives in store-bought gel. I know it says 100% aloe, but wouldn't it spoil without some sort of preservative added? I guess I should go read the label in a store, but I'll just buy some aloe plants and hope I don't kill them lol. The office will actually give patients a plant if necessary. Anyway, I do know someone who did just that, and never needed anything else. She actually brought a plant with her and applied the aoe immediately after treatment. Hoping we all go through this as smoothly as she did.

    · Share on FacebookShare on Twitter
  • SweetHope
    SweetHope Member Posts: 439
    edited June 2015

    Hi, Hopeful, good luck today as you start Rads. This is another big gun in your arsenal. It is unnerving at first, being this invisible thing attacking any rogue cancer cells...but by treatment #3, you should feel very comfortable hopping on the table, letting strangers mark up your chest, tug you into position, then leaving you alone with R2D2 looming over you! Give us an update this evening, okay?

    BTW, that rash that started on Sunday has almost disappeared! I really feared that it would get worse this week as I still had three more whole breast rads, which will end today, but the itching is gone and the skin is smooth, unbroken, and only a little spotty looking. The techs told me to get Domeboro, which is otc in the allergy section at the drugstore. It is a powder that you add to water and apply by soaking a cloth with it and applying for ten minutes three times a day. It isn't greasy, and it really worked to stop the itch quickly.

    image


    · Share on FacebookShare on Twitter
  • Hopeful82014
    Hopeful82014 Member Posts: 3,480
    edited June 2015
    Thanks so much, SweetHope! I really appreciate your encouragement today.

    And I am REALLY glad to hear that your rash cleared up and you continue to do so well going into the homestretch.

    The visual of the Domeboro (and where to look for it) is useful, too. I've heard of it but wouldn't have thought to look for it in the allergy section. I wonder if it's good for poison oak and ivy as well? I'll bet it is.

    My husband's going with me to the appointment this afternoon, which includes a teaching session. I'm really glad to have his presence in the waiting room and the drive there and back and the support of my friends here, too. Thank you.
    · Share on FacebookShare on Twitter
  • Metta
    Metta Member Posts: 84
    edited June 2015

    Valentine99, that's wonderful! I can't wait to be done. So after your skin breakage, how did you mentally deal with going to treatments every day? I am having a rough day today, cried uncontrollably for the first time since I started (I'm on #20 of 28). I think it's because last night, all of a sudden, I felt a sunburn under my arm. Now if a normal person gets a sunburn, they stay out of the sun, right? But we have to keep going to radiation every day, despite rashes and pain. It was really hard to lay there today, submit to that machine, and know that I'm going to be in worse pain tomorrow and the next day and the next. From what I've read here, it sounds like I'm going to be in pain two weeks after my last treatment, which is like a month from now! I feel scared and overwhelmed. I want to run away to Bali and not have cancer anymore.

    Gatomal, that post you wrote after your sim was exactly how I felt. It's scary and I hate it. It did get better and felt less scary as time went on, but I still cry almost every time. It's so lonely in there with the machine. One day when the laser beam went off, I looked at the camera lens and it looked like an eye. Now I look at the eye every day just to feel like someone cares.

    RvGal, yes, I think you guys are right: sweating makes it worse. It was boiling hot here yesterday and I stupidly wore a sleeveless shirt ... I won't do that again. Maybe the friction caused my skin to flare up. Maybe I had it coming anyway. This morning the nurse said she has NEVER seen anyone escape unscathed. I guess most of the six weeks are a breeze, but wow, now that I'm in pain, I am dreading the next few weeks. I don't mean to scare people who are doing well with radiation. I'm sure most people breeze through.

    To the folks who are done, can you reassure us that we will get through it? After four biopsies, five months of chemo, that brutal surgery, and now radiation, I don't feel like I can handle any more pain and suffering right now.

    · Share on FacebookShare on Twitter

Categories