June 2012 Radiation Rads

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  • Mtalsky
    Mtalsky Member Posts: 14
    edited June 2012

    This whole ordeal is difficult but helps so much to be able to tell you girls and read how we feel and know we understand because we all are going through it. There will be good days and not so good days, but there is a light at the end of the tunnel for all of us. I am grateful I can read your comments and know I'm not the only one having these feelings. I am going through this alone but dont feel alone! Thank you and hang in there it can only get better, right?

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  • Jennt28
    Jennt28 Member Posts: 2,021
    edited June 2012

    Janie - yay that you got the arm of the study you wanted :-)



    Bonseye and everyone with pain - Please do mention it to your RO. It should not have to hurt! They soecifically asked me if my raised arms were comfortable when doing set-up and my RO said they are now doing both arms up for everyone because it was more comfortable somehow and people are less "twisted" so it makes it better for the rads plan.



    Jenn

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  • Lagata1276
    Lagata1276 Member Posts: 85
    edited June 2012

    Riverangel - I find that odd they didn't tell you when your rads would start if you got scanned today. I went for mine on Thursday and they set everything up right there. I didn't get my first choice in times but got my second.

    Anyone else just get the sharpie marks with the waterproof tape instead of tats? I know we shouldn't swim/hot tub while undergoing treatments but I want to hot tub one last time this weekend before my first zap on Tuesday. But will the marks/tape come off? I guess I shouldve asked the staff...

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  • mckenna
    mckenna Member Posts: 413
    edited June 2012

    I don't have tats and was told not to soak in a bath tub or stand directly under a shower.

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  • Riverangel
    Riverangel Member Posts: 19
    edited June 2012

    Lagata....I live in a smaller town in Arizona and they send the CT scan to Phoenix for some reason. Then it comes back and the RO does his plan. So she said that takes about 5 to 7 days. Then she will call me with a date. I have learned over the past couple months there is a lot of waiting because the Drs here work with bigger facilities and labs in both Phoenix and Las Vegas and it always takes a couple of days for results. I am sure she told me what they were going to in Phoenix, but I was rather emotional so I can't remember....I think I need to start recording things so I can hear them when I'm not so anxious.

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  • Nel138281
    Nel138281 Member Posts: 2,124
    edited June 2012

    Hi All,

    yes the johnnies are the hospital gowns.  There is money to be made al the way thru this process from the camisoles they send you home with after surgery to the hospital gowns.  For me I was already  feeling miserable emotionally and physically, a bit of nice clothing would go  miles to help us all thru.  A bit of lace on the cami, really it wouldn't take much!!   My tantrum for the AM.

    4 down and 26 more to go. 

    Neeners, My arm hurts as well.  It feels like it is over my head forever!   Another part of the torture stuff they put us thru. 

    Hope all have a restful weekend

    Nel

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  • rava
    rava Member Posts: 49
    edited June 2012
    Okey, my first post on June rads Smile Started my 25 rads monday 6.4.12. 5 down 20 to go... I`m tired, but I thik it is mostly from the chemo... Can`t see anything om my skin. I use emu oil and aloe spray from forever living. Hope to keep my skin together Smile
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  • akinto
    akinto Member Posts: 97
    edited June 2012

    Had my first nap since diagnosis. I think I am less crabby.Wink

    4 down, 12 to go!

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  • Denise-G
    Denise-G Member Posts: 1,777
    edited June 2012

    Rava - welcome!   How are things in Norway?  Still want to get there someday!  I better get on with it!

    I start Rads on Monday 6-11-12.  Have to do my homework today and tomorrow.  I have My Girl's Cream, Emu Oil, and Aloe.  Not sure what to do with it all.  I have to go read all of these posts!

    Thanks to all of you for being here.  It gives me courage and hope to get through this leg of this unwanted journey.  Can you believe everything we've been through, all we have learned, and we are still alive to talk about it???  It truly does amaze me now that I am out of Chemo Brain Fog!!   I don't know how I made it through!!

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  • Jennt28
    Jennt28 Member Posts: 2,021
    edited June 2012

    My RO is OK with any cream so long as it doesn't have alcohol. After doing a lot of reading I pretty much figure that creams are creams and while they may make things feel softer etc there is nothing that is proven to change the reaction your body is destined to have. The only substance that seems to have had any research at all on it is calendula.



    So I have 3 tubs/containers ready: 1 tub of calendula cream, 1 tub of pawpaw and calendula cream and 1 pump container of aloe.



    I'll be working everyday in the office from 7.30am and then wandering up the road at 3.30pm for rads. There's not going to be a lot of "creaming up" happening for me I'm afraid.



    What made everyone choose the specific creams/lotions you are using?



    Jenn

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  • Neeners815
    Neeners815 Member Posts: 358
    edited June 2012

    My RO actually is sort of against putting anything on unless you have problems.  He said he hasn't seen any difference and not to waste the money.  I showed him what I bought and instead he gave me a prescription for preventative stuff if I really, really wanted it.  It was $41 for a little tube.  Insurance didn't cover it :(  I'm only lubing up once a day, after rads, with it.  I'm still doing the baker boob daily, too. (Can't remember if it's been discussed here or not, but it's corn starch)

    Denise - good luck, Monday! 

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  • Jennt28
    Jennt28 Member Posts: 2,021
    edited June 2012

    Neeners - I think my RO is just amused by her patients using creams... It's obvious she thinks it's a waste of money too. She told me some of her patients are ordering some cream from France!



    Jenn

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  • BLinthedesert
    BLinthedesert Member Posts: 678
    edited June 2012

    Hi Jenn ... even though I actually believe the potions and lotions might not work, I am all over the placebo effect Smile - I got my "daily boob care" from a friend who finished treatment last year (she had stage 1 and it looks like she had very similar chemo to yours).  She knew her regime was over the top - but she is fairly large breasted and had no problems ... so I thought, "me too!!".

    I did not have any problems until about day 14, then it started getting red - now you can actually see an outline of the radiation field ... it is "interesting".  Unfortunately, I am getting a horrible rash on top of the burn, all my lotions and potions aren't helping. 

    Rads is both easier and harder than I had imagined.  But, I do think that my other breast is looking softer than it ever has (since I treat them both equallyWink). 

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  • lmlola59
    lmlola59 Member Posts: 146
    edited June 2012

    Hi all have had 12 treatments and so far the skin looks normal though a bit sensitive.I have been using the Aloe Vista they gave me directly after and then i use Aloe about 2 times during the day and Aquaphor at bedtime. My RO said I would notice it about 2 1/2 to 3 weeks so that should be this week we will see if this changes.Have not yet had to worry about shaving since Chemo but I can feel little nubs working there way back so we will see if I need to address this soon.I have no node involvement so I don't think my armpits are involved with the rads.Also notice that some days I am tired and some I am not it isn't consistent tiredness so for that I am thankful.It isn't the overwhelming tired you felt at chemo more of a slower to get moving in the morning and in the evening get tired earlier,but I have noticed my muscles are tired and sore if I sit to long and have that 80 year old lady feeling and limp when I get up out of the chair. My RO did bring up a good point that I am probably doing more than I was during Chemo and maybe this is also why I am more tired and he is right about that.Also one other weird thing is I have the hungries all week during rads and eat more than I want but I did notice yesterday Sunday it had subsided. But I am also not gaining any weight rather down few pounds not complaining just trying to figure out if it is a symptom.I know I did a 10 day detox between Chemo and Rads and have been really trying to stick to organic and only farm raised with no added anything so maybe this is also it.Maybe cleaning out the system of the chemicals has made my body more efficient.Though I wasn't far off the mark originally with my diet low carb,low sugar,lots of veggies and fruit,not much processed.But really trying to eliminate the added crap a lot of our food today has even though it is really stretching the purse strings with a family of four plus their BF and GF always at the house.

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  • mamabee
    mamabee Member Posts: 546
    edited June 2012

    I'm having my first treatment today so I don't really know what I'm talking about yet Tongue out, but my RO and his staff gave me Miaderm cream and samples of Aquafor. The techs who did my dry run last week think it's important that I use the Miaderm 2-3 times/day and they said I should put it on right after my Tx. They're very worried about my skin because I'm pretty fair and I'm going to have a lot of bolus treatments (I had a mastectomy with TE and I had some skin involvement). I also bought aloe vera since that seemed to help others. 

    I don't know why, but I'm more nervous about rads than I was about chemo or surgery. Maybe it's because I'm finally feeling like myself again after months of treatment and now I have to go back into the trenches... 

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  • Denise-G
    Denise-G Member Posts: 1,777
    edited June 2012

    Mamabee - I am with you as I start rads today as well.  For me it is a different feeling than surgery or chemo, but I am really nervous like the feeling you have when starting a new job.  And I agree, it is hard to go back to the trenches when you FINALLY start feeling good again. 

    I'm going to stop at Health Food Store after rads to get some good Aloe.  I have My Girl's Cream which has Calendula.  RO recommended aloe, then later Miaderm and Aquafor.  Yes, who knows if the potions and lotions work, but it does make me feel better!

    Thanks, EVERYONE, for all the info!  Appreciate it so much!

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  • rava
    rava Member Posts: 49
    edited June 2012

    Denise-G Thanks for the welcome :) Norway is a bit too cold :) We are still waiting for summer. Last three summers has been cold and rainy :( So I'm hoping for better luck this year. There are lots of tourists coming form USA each summer to the area were I live (west coast) Many are cruise tourists :)

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  • Infobabe
    Infobabe Member Posts: 1,083
    edited June 2012

     rava 

    Why don't you let your house and come over here to the States.  Lots of warm places to stay.  It looks like you may be through active treatment.

     Must be late evening where you are. 

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  • Lagata1276
    Lagata1276 Member Posts: 85
    edited June 2012

    Mamabee and Denise - good luck today!



    Riverangel - that's too bad about the wait. And I think that's a good idea about taping your discussions with the doctor. There is just so much information, it's hard to remember everything.

    McKenna - decided against the hot tub. All my waterproof tape is still on, protecting my negatives and positives!



    So I'm finally getting nervous as tomorrow is my first treatment!!! I'm all about "celebrating" milestones, so may drag DH with me and go to lunch afterwards.



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  • Neeners815
    Neeners815 Member Posts: 358
    edited June 2012

    Mamabee & Denise - congrats on starting!  You're on your way to being done.

    Lagata - You'll see - it's quick, quick, quick.  They spend more time repositioning you than the actual zaps, and you do NOT feel anything during the process at all.  You'll be fine and can start the count down!  How many treatments are you having, again?

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  • Denise-G
    Denise-G Member Posts: 1,777
    edited June 2012

    Okay, I'm back to report Treatment One.  Got undressed in radiation room with middle aged tech.  I laid all my stuff on a chair.  VERY GOOD LOOKING YOUNG male tech named Brad walks in.  He says, "Oops, you dropped something" and there was my foob lying on the radiation floor!  I'm not used to wearing sports bra and just tucking the foob in!  I said, "Well that breaks the ice" and he said they see all kinds of things in the radiation room!  LOL!

    I think the first day was unnerving as they had to do extra stuff that won't happen tomorrow or in any other sessions.  I was nervous, then tried to calm down, then ended up being fine.  The staff really is friendly and amazing.  The doctor was wonderful and he met with me afterwards.

    Lagata1276- all will be well and good luck tomorrow.  Know that there may be a few extra steps on that first day to make sure they have you lined up etc.  The radiation part goes quickly.  Came home and lotioned up!

    1 down 32 to go!

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  • BLinthedesert
    BLinthedesert Member Posts: 678
    edited June 2012

    Denise, I think it is a little unnerving that they have you undress in the radiation room, while others are present.  We have a dressing room (one for men and one for women) - it is not really that private, but it does have curtains that shield you from other patients if you desire.  Then we go to a waiting area (there are usually one or two people in the waiting room) and get called into the radiation room.  I have found that while radiation treatment is unpleasant ... the treatment facility that I am using is actually very efficient, and thoughtful about this type of thing.   

    It certainly was a good way to break the ice though!!Smile 

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  • rava
    rava Member Posts: 49
    edited June 2012

    Infobabe, we are planning a holiday to USA in the future :) my oldest daughter is really keen on going. She is 12 now. Youngest is 7, so we would have to waith untill she is a little older. It's a big country many places I would like to see. It is difficult to decide where to go...

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  • rava
    rava Member Posts: 49
    edited June 2012

    I had a new RO today, a young man. I have never seen him before. Friday I told my usual RO that I was brining my kids on Monday. They welcome kids, and it was ok. When we came in to the radiation room I got undressed and was about to lie down. The male RO looked my kinds and said "are they your kids?" ehhh,no I just picked the up utside... I think he saw my surprised look. As If I should bring somebody else's kids to join my cancer treatment :))

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  • Jennt28
    Jennt28 Member Posts: 2,021
    edited June 2012

    Good luck to all starting this week :-)



    How strange they make you undress in the room in front of people Denise. Our centre have change rooms and you don't change until it is your turn so no sitting in a gown with strangers!



    At the moment the change rooms are being renovated so they have set up some store rooms as temporary change rooms or you just go straight to the treatment room where they have a curtain over their viewing window and you get changed privately and then duck your head out to let them know you are ready and they can come back in.



    Jenn

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  • Lagata1276
    Lagata1276 Member Posts: 85
    edited June 2012

    Thanks Neeners! I'm not sure how many I'm getting. I asked last time but they said the RO will look at my progress and determine a few weeks down the road... I will ask him directly tomorrow.



    Thanks Denise, that made me laugh!



    Can you bring someone with you into the rad room? I would love for my DH to see what I'll be going through.

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  • Neeners815
    Neeners815 Member Posts: 358
    edited June 2012

    I don't think you can take people in there with you, but you could have him look at the room and see the machine before you have an actual treatment.

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  • lmlola59
    lmlola59 Member Posts: 146
    edited June 2012

    Denise unfortunate for you this happened but I have to say it gave me a good laugh Embarassed 

    We have small private rooms to change and lockers to lock up your things then sit in a female only private area.I have only run into peaole twice here since I ahve been going so it is very private.We cannot bring any one on onfact they would have to wait in the main entrance seating area 

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  • Infobabe
    Infobabe Member Posts: 1,083
    edited June 2012

    rava

    Would you like something super modern or something quaint and historic? 

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  • Believe777
    Believe777 Member Posts: 576
    edited June 2012

    Oh my goodness!  Scottie1, I have beeb reading all of these posts and getting so nervous, and then I read your positive post.  I had my CAT Scan last week, along with the tatoos (they really didn't hurt, felt like a pin prick in the middle and hardly felt the ones under both arms) I had to search hard to find the one in the middle - I got nervous after one person said it looked like a black head. 

    Tomorrow, June 12th, I go in for my dry run and if that goes well I start radiation treatments on the 13th, for 15 days and then a 5 day boost.  The nurse who told me what to get for comfort, aloe vera, said this is the Canadian Radiation.  I believe I read on here that we all get the same dosage - only the delivery varies. The nurse was surprised that I wasn't given a choice.  I am glad to get it over with more quickly. 

    I am very concerned about the side effects that I have read about on this site, again the doctor didn't mention them, or if she did, I didn't hear her. I am so ready for this journey to be over! 

    Thank-you for all of your posts!

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