May 2012 radiation

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  • FLislander
    FLislander Member Posts: 243
    edited May 2012

    Hi everyone, looks like I'm a may rads gal too. This is my third group, chemo, surgery now rads, guess I've got one more after this with the tamoxifen. I tell you I could not have gotten though this without all the wonderful women on this sight. I'm looking at miaderm on amazon, may check around locally first. The RO nurse said she had enoug aquapor for 20 years so that's covered. The miaderm has calendula and aloe, two things I was looking for in one.

    I went in today for pre simulation, then I go Tuesday for simulation and plan, then start Wednesday.

    Here we go, here's hoping May goes smoothly and quickly. Good luck this week, and I guess we will really be enjoying our weekends!

  • Cyndielou
    Cyndielou Member Posts: 1,470
    edited May 2012

    Hi Ladies, 

        I feel so naive reading what everyone has been saying about their diagnosis and treatments.You all sound so educated on this whole deal.  I completed day 6 of my radiation today.  I've been blind sided by all of this ..things have progressed so rapidly that I had a lumpectomy and my lymph node surgeries before I even knew what stage my cancer was. Im very fortunate that chemo was ruled out.  I will be taking Tamoxifin for 5 years and I have a hysterectomy to look forward to after radiaton..as a precaution.  So far with the radiation ...Im beginning to get a little pink ....it just seems like Im constantly sore now but its been that way since the surgeries..maybe thats psycological...I've been using Aloe and am going to a whole foods store to conconct my own miaderm cream with calendula. Hope its ok to join your discussion.

  • schatzi14
    schatzi14 Member Posts: 1,647
    edited May 2012

    Cyndielou...welcome. Nice to meet you.

    I have been done rads for 5 weeks now and I have no SEs...as for the pinkness may I suggest GLAXOL BASE? Any drugstore or CostCo has it...$28 (approx) for a huge jar. I had 16 rads only but was never even pink. Use it 3 times a day and continue for at least 2 weeks after you are done. Hope that helps.

  • mckenna
    mckenna Member Posts: 413
    edited May 2012

    cyndielou, i am right there with you, i feel like i have been rushed from one thing to the next and yesterday was my breaking point.  our time lines seem very close i was diagnosed about a week after you. 

    flislander, welcom and good luck with rads 

  • Cyndielou
    Cyndielou Member Posts: 1,470
    edited May 2012

    Thanks Schatzi and Mckenna...I will check out that Glaxol..souds easily obtained..my RO suggested a cream that was very expensive and can only be ordered however she said the main ingredients can be picked up at a whole foods store but pretty out of the way..between trying to impact my job too much and making my apointments and then of course the other day to day and week to week things that we accomplish without a thought it doesnt seem like there is a minute to spare ...all of this and being totally tuckered out....Mckenna..I have breaking points all the time..randomly with hardly a trigger..just happens.  I think its part of the fight and makes us that much stronger..

  • sbelizabeth
    sbelizabeth Member Posts: 2,889
    edited May 2012

    Joining in here!  Radiation will start mid-May, for 35 treatments total.  I'm looking forward to getting past yet another hurdle on this enormous speed bump.  I had the "sim" a couple of days ago and it was pretty anticlimactic.  A couple of x-rays, three tiny "prison tattoo" freckles, a CT scan, and we're done.  The tattoos were nothing more than a drop of India ink and a small gauge needle to poke in an itty-bitty speck. 

    Diagnosed 10/2011, lumpectomy, another biopsy, port placement, chemo x 6 rounds, single mastectomy, now radiation.  The plan is to let the radiation effects settle for six months and then reconstruction.

    For those who are currently in the middle of their rads, what bra style or tips can you recommend?  I work full time and just can't come to the office with one swinging and one missing. 

  • dlsrzbb
    dlsrzbb Member Posts: 6
    edited May 2012

    Kelloggs

    It has happened 3 times now but only when I have a bowel movement. Enough to make toilet bowl red. I have a call in to my PCP but he hasn't called back yet. The lady who does my radiation suggested starting with him, but she said that at my age (almost 60) and since it has been 10  years since I had one I should have a colonoscopy. She said it could be nothing, but that I definitely should not ignore it. Could just be hemeroids. I just don't want to find out there is more wrong with me. Wah Wah Wah.

  • dlsrzbb
    dlsrzbb Member Posts: 6
    edited May 2012

    Cyndielou

    welcome. I feel a lot like you. So much of what everyone is talking about goes right over my head. Maybe if I hang around I will learn more about what is going on with me. When I went to Dr. for Radiation, there was no mold, no tattoe, no simulation. She just put me on the table, marked me with a marker, put tape on and started the radiation. I have had 5 treatments so far and I am still not sore in the breast area.  I have not been putting any cream on. Sounds like I should be. I thought they said not to use it until after the radiation.

  • dlsrzbb
    dlsrzbb Member Posts: 6
    edited May 2012

    mckenna

     I am sorry things are going so hard for you right now. Seems like life and all should just take a break while we are going through these scary times. But instead, because we are at our weakest emotionally I think, everything seems to be totally magnified. Hope things get better. Just know somebody cares.

  • mckenna
    mckenna Member Posts: 413
    edited May 2012

    thanks dlsrzbb, please let us know what the dr says.  i am sure that is scary and yet one more thing to worry about.  what breast are you having radiated?  how are they protecting your heart and lungs if they don't use the ct to make sure everything will be hitting you in the right spots?

    well dry repair man could not fix dryer so now i have to get a new dryer and new car this weekend :)  i am going to be happy about the new car, i am downsizing so hopefully that will save in gas money.

    they just called from rad office, who knows when i will start now they are saying the 14th but i am not holding my breath for this infection to clear up by then.  i wish they would just admit me for iv antibiotics and be done with it.  if i have to have simulation done again i will not be happy.  i did not like it at all it was strange being drawn on and have photos taken i just didnt like and it is such a visible sign that i have cancer.  it is hard to look at.

  • mckenna
    mckenna Member Posts: 413
    edited May 2012
    well, today is a better day!!  as long as this stupid infection clears up, i now start rads on the 14th and i got a time that works and does entail my mom driving 2 hours round trip everyday for 5 weeks. Smile
  • Kelloggs
    Kelloggs Member Posts: 965
    edited May 2012

    mckenna - I know it sucks to have them draw on you and lay exposed for rads...cancer sucks!  You said it was a visible sign you have cancer.  At least you don't have to walk around bald...that's MY sign I have cancer.  It's starting to grow back, but it sure sucks!

  • mckenna
    mckenna Member Posts: 413
    edited May 2012

    kelloggs, you are so right.  for me this was my first outward sign i had cancer. it would suck to be bald, i have a lumpy head :)

    glad your hair is growing back, my son has a buddy at school whose mom is also going through this and she had to have chemo and she stopped chemo in november and her hair is still very short but it is so soft like new born baby hair.  is yours growing back the same as it was before or has it changed color or texture?

  • Kelloggs
    Kelloggs Member Posts: 965
    edited May 2012

    hmmmm...good question!  I always colored my hair LOL.  It is coming back in dark with grey in it (I am 45 after all) and so far it's only long enough to stick straight up.  I had very thick, curly hair before chemo but not sure if I remember what color is natural for me.  I believe it was pretty dark.  I know it sounds ridiculous but losing the hair for me was the hardest part of chemo.  It screws with your self esteem....which for me was pretty good before all this cancer crap started.

  • Cyndielou
    Cyndielou Member Posts: 1,470
    edited May 2012

    Stopped into CVS today after I got zapped to look for that Glaxol..they didnt have it..Guess I'll check with Walgreens.  dlsrabb...I would question not doing the simulation, molding and tatoo's to me it seemed like quite a process but an important one to assure they are getting the right area and not hitting something that shouldnt be like lungs..  Hope your other issue gets resolved...like its not bad enough allready.  Kelloggs..bless your heart...and keep up that positive attitude..this all sucks no matter at what degree you have to deal with. 

  • Dizzy215
    Dizzy215 Member Posts: 74
    edited May 2012

    Hi ladies, it's been a while since I was here - hello to everyone! Schatzi, thanks for the tip about the Glaxo cream.  I used to belong to Costco but BJ's is nearer now.  If they don't have it, I'll ask a friend to get it for me. Mckenna: yes my appointment with my RO on 5/7 is my first one. I wonder how long after that I will start the treatment?  Can't wait to get it over with but I'm not worried about it - I just want to be done with this whole thing! Also can't wait to switch my ovaries off but not really looking forward to the menopause....oh well, I guess it was coming soon anyway (I'm 50).

    I was thinking today about future screenings.  Mammograms are useless on me as I have dense breast tissue and my tumor was only picked up on USS. My MO said the radiation will make my breast even more dense.  Interestingly, my initial scan revealed a mass around 1cm, the MRI said it was 2cm and the surgeon found it was 4cm!  Just learned of a mamography center near me that uses a new technology: Tomosynthesis - it's like a 3D mammogram, so I'm going to give that a go!

    My biggest issue at the moment is my nipple, which has gone into hiding...not that I blame it, poor bugger!! I know it's probably because the scar tissue is pulling on the duct and tethering the nipple, but it's quite sensitive and sore. I wonder if it will ever be the same again? 

    Hope everyone has a great weekend....remember, We Can Beat This!!  Hugs to everyone.  

  • mary71145329
    mary71145329 Member Posts: 133
    edited May 2012

    I'd like to join in since I think I'll finally start my rads. My LX was 3/6 and have not had any treatment since. Took forever to get an appointment with the MO then waiting on the oncotype result. Test result came in today-nurse called with the announcement. No chemo for me so on to rads! Appointment on 5/9 to get set up. What do I have to look forward to?

  • FLislander
    FLislander Member Posts: 243
    edited May 2012

    Mary

    Last week was My first visit they just discussed benefits and studies and such, second visit was pre simulation, they took ct scan and marked me up with a sharpie, and made a custom fit pillow in the position they want me. Now they are working on a plan that I will get Tuesday and do the actual simulation to see if everything is lined up then wednesday will be first treatment.

  • Mardibra
    Mardibra Member Posts: 1,111
    edited May 2012

    Just got tatooed today!  Officially start on 5/15.

  • etherize
    etherize Member Posts: 423
    edited May 2012

    dlsrzbb, when they say not to put on cream until "after radiation," they mean after that day's radiation, not when it's all over completely.  They just don't want you to have cream on when you go in for the treatment. :-)

  • mary71145329
    mary71145329 Member Posts: 133
    edited May 2012
    I've already had my consult with the RO. I was just waiting on the "all clear" from my MO after the results of my oncotype. I'm figuring the appointment coming up will be to get it all measured and set up. A CT and a custom fit pillow? Interesting.....Wink
  • Cyndielou
    Cyndielou Member Posts: 1,470
    edited May 2012

    Mary, the "pillow" is a mold ... they call it a cradle so when you lay in it on the table you are in the right position..the CT I belive helps also in positioning as well as the tatoo's in lining your body up.  I had no idea it was so involved..but I guess you just dont know unless its something you are faced with either yourself or loved one. Undecided

  • mary71145329
    mary71145329 Member Posts: 133
    edited May 2012

    Thank you Cyndielou....makes sense, I guess. So each pillow is custom made for that particular patient?

  • Cyndielou
    Cyndielou Member Posts: 1,470
    edited May 2012

    Yes Mary.  Good luck with your initial apointment.

  • Moderators
    Moderators Member Posts: 25,912
    edited May 2012

    Hi May gang,

    Popping in here to share some helpful info on the main Breastcancer.org site on Radiation Therapy, including types of radiation therapy, what to expect, and how to manage side effects.

    Hope this helps!

    --Your Mods

  • Kelloggs
    Kelloggs Member Posts: 965
    edited May 2012

    Thanks Mods....and welcome Mardibra!

  • Joanne_53
    Joanne_53 Member Posts: 1,477
    edited May 2012

    Hi ladies -- I am an April/ May rad gal --- I have 6 left out of 25 -- my skin is good with a bit of redness under my arm --

    I have been using Glaxol base also and slather my ENTIRE breast (nipple too) and arm pit about 3 times a day.  I take it with me to rads and apply as soon as I am out -- you cannot put any lotion on up to 2 hours before treatment.

    The worse part is the fact you have to go everyday for XX number of days ....

    Good luck and I will check back again.

  • schatzi14
    schatzi14 Member Posts: 1,647
    edited May 2012

    Joanne

    Glaxal did the same for me...don't forget to use it for 2 weeks after you are done rads too!!!

  • mckenna
    mckenna Member Posts: 413
    edited May 2012

    did they make your molds the day of simulation or your first rad appointment?  i thought i would have a mold made at simulation but i did not so i am wondering if they are not going to do it or if that is why the first appointment is at a different time and longer?

    hope everyone had a nice weekend.  i talked with a friend who just ended rad treatments and she said her simulation day was very emotional too.  she cried the whole way home like i did.  and she had had much more treatment than i.  so i am going to chalk last thursday up to my freak out day and know it will all be better :)

  • Joanne_53
    Joanne_53 Member Posts: 1,477
    edited May 2012
    mckenna - I did not have a mold -- take a deep breath and remember that everything is going to be ok -- you are almost there ..... one more step ...Smile

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