APRIL Rads Anyone?

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  • Lainey64
    Lainey64 Member Posts: 740
    edited April 2009

    Thanks Susan.  It's weird but the nausea is gone now.  Unlike chemo nausea, this just kind of sneaks up on me, aggravates me for a bit and then disappears.  So weird.  Like all of you, I can't wait til this mess is over with!

  • shan1171
    shan1171 Member Posts: 138
    edited April 2009

    Number 6 whooped!  Nothing major going on with SE's yet (fingers crossed).

    susan - My hotflashes do seem to have gotten worse, although I think it's partly due to the warmer weather.  I actually took a lukewarm shower this evening and I'm one of those "so hot you can't stand it" kinda girls.  Sucks!

    • Lainey - I hate your tummy is bothering you!  I'd rather hurt than be sick at my stomach.  It is one of those things you can't ignore, especially if you start hurling.......bless your heart.  I hope I don't have that to look forward too.  It's true, it is a SE my doc didn't mention either.  Obviously it is a very real possibility because so many have mentioned having it.  I'd share Dr. Love with you if I could......he might make you feel some better.......sigh.  I wish I could put him in my pocket and take him home with me!  I would try to snap a pic for you, but it might freak him out.  Maybe if I explained, he would be sooooooo flattered he would leap across the room, rip off....wait......did I type that out loud?  Ha!


    Britt - I know it must be really bad if they postponed treatment.........It really stinks when what is supposed to help actually makes things worse. 

    prettiestmess -  Who knows, you might start a trend.  Cone boobies......heck, mine are already hard as cones, d@#m expaders.

    Oh, susan, I just noticed your web address...........ha!  

    I'm pooped.  My dad and me put a 10 x 12 gazebo up today on my back patio.  As soon as I got home from treatment at about 1:00 PM, we started.  Worked on the blasted thing till about 6:00 PM.  I wasn't about to stop with help on hand, even though it about did me in. It turned out really neat, great shady place for Cam and me to veg, but geez.........wore me smack out!  I have to mow tomorrow, if I can still move, that is!  Sometimes I miss the winter......

    Still no hair to speak of...........just craptastic........

    Hugs to all, can't hardly keep my eyes open.......

  • ango74
    ango74 Member Posts: 255
    edited April 2009

    Hi ladies,

    Just had my first rad today. It wasn't what I expected at all. I felt like I had been abducted by aliens with that machine rotating around me and the voices coming over the intercom.  lol. I finished chemo in Jan.  I am a little late strating rads. I am on a trail that adds Avastin to TCH. My onco has been out of the office for surgery so I have been seeing the nurse and she said I didn't get rads until I was done with Avastin. When I saw the doctor two weeks she was very upset because I should have started rads back in Feb and someone dropped the ball. So, here I am. I look forward to reading through here and seeing how everyone is doing.

    Take care,

    Angie

  • Juli50
    Juli50 Member Posts: 859
    edited April 2009

    Robin - Or maybe you can borrow a cone from Madonna (for those old enough to remember!) Laughing

    26 down, 10 to go!

  • Britt
    Britt Member Posts: 731
    edited April 2009

    Hi Shan and everyone -

    Yes, it is very unfortunate - the rash has spread beyond the affected area and is all over my back -the rads onco thinks it may be because I am very fair and have very sensitive skin.  So far, the hydrocortisone is working - so far, at least.  I wonder why we have to be zapped every day without a break for those of us who have skin issues - and you are right, apparently it is hurting more than it is helping and is making things much worse.

    I am also seriously contemplating ending the radiation treatments.  My right breast is swollen, aches constantly, and the more rads I have, the worse it is becoming.  I feel no one at my rads place is taking me seriously. The nurses are not helpful at all.  They keep recommending different creams which have all caused me to break out in a horrendous rash.  I have already had 19 treatments.  Had a lumpectomy with subseqeuent ALND, only one micromet in the sentinel, low Oncotype score, clear margins. At this point, if it comes back, it comes back.  I really don't care anymore.  This is beyond painful.

  • Anonymous
    Anonymous Member Posts: 1,376
    edited April 2009

    Today is #9 out of 28 for me.

    Saw my rad onc yesterday, and she said my skin is just where it should be: slightly tan with a few freckles where the sun doesn't shine. LOL 

    I will be praying for those of you with skin problems. I am a woman of faith, and it really helps. Many people are praying for me to get through rads with few complications, as I had an awful time with chemo and surgery. So far, I am doing fine.

    One day at a time. I am not getting much sleep with this topless business. Tom thinks it's the best prescription ever!

    Have a great day everyone!

    Bette 

  • Lainey64
    Lainey64 Member Posts: 740
    edited April 2009

    Good morning gals.  So yesterday I asked the rads techs if anyone has ever complained about nausea while undergoing radiation for BC and they said "no".  Of course they did!  They said that the trigger points for nausea are the stomach and the brain and they are no radiating either of those places.  So ok....  I am thinking maybe my vitamins are to blame.  I take them in the mornings after breakfast and yesterday I didn't eat too much so maybe that is what caused it.  Not sure but going to try something different today and see if it helps.  My rib area under my radiated side is a bit tender.  I've read a lot that it happens so I'm not freaking out.  I see my doctor today.  I still have no real issues to report.  But I am a lot more tired than I was in prior weeks.  I went to bed at 8:30 last night and still had trouble getting up when the alarm went off this morning.

    Britt - I'm so sorry you're having these problems.  I really hope you don't stop your rads because of it.  I wish there was something that could help make it more tolerable for you.  *hug*

    Have a great day everyone! 

    Lots of Love, Elaine

  • kjbell
    kjbell Member Posts: 974
    edited April 2009

    Started week #5, time flies...A little red and sore, but I can't complain. Britt, I feel bad for you. I am sure there is a reason they want no breaks between treatments, but I don't know what the reason is. After all, you do get the w/e off, so why not an extra day or two when you have severe skin issues? It makes no sense to me. I just hope you feel better soon.

  • susan13
    susan13 Member Posts: 732
    edited April 2009

    Hi Ladies,

    Welcome Angie!

    Shan1171-OH pleeeeeeeeeeese send us a pic of Dr. Love cause I think you got us all curious!  I just adore good looking doc's, they make visits so more pleasurable:-)

    Elaine-I always take my vits. with water, they definitely can cause stomach upset. But glad to hear you're better today.

    Britt- Oh noooooooo I am so sorry you are having such a difficult time.  It must be very frustrating to you.  That rash has to be helped by something, someone has to give you some answers BEFORE you decide to quit rads.  Did you try talking to your medical oncologist?  Sounds funny but sometimes I trust my med. onc. about the radiation treatments more then I trust my rad. onc.   He was the one who warned me about the nausea rads can cause.  I do hope your rash is resolved soon! Hang in there!

    #7 this morning, AND I got my port removed! Wohoooooooo!

    I'm starting to see my radiated side is much more pink then my other side.

    Have a great day ladies!

  • Britt
    Britt Member Posts: 731
    edited April 2009

    Hi everyone -

    Thank you for listening!  I have been resting today and the hydrocortisone really seems to be working -  the bumps have gone down and the itching has diminished.

    However, here's something I would like to mention:  my rads onco and his staff do not have a problem with their patients putting cream on the affected area prior to rads.  Ergo, each day before my treatment I would take a shower and put my aloe vera gel without alcohol or dye or the Jean's Cream on the affected area - also slathered my back with the aloe vera.  I used my usual skin care creams on the rest of my body.  I wonder if this may have caused the rash, particularly on my back, since I have read that the beams exit through one's back?

     And I have also noted on this board that most rads oncos advise their patients to put NOTHING on the affected area prior to radiation treatments.  In fact, I mentioned my onco's protocol to another woman on another board who went through rads, and she was astonished - her doctor was also very firm in stating that nothing was to be put on the affected area prior to treatments.

    Now - have most of you been advised not to put anything on your affected areas prior to treatment? I am just curious.  Thanks for listening!

    Maria

  • Anonymous
    Anonymous Member Posts: 1,376
    edited April 2009

    Hi everyone - 18 down - the light at the end of the tunnel is getting brighter!!!

    Britt, I do feel for you and am sorry for the skin problems you are having.  I, like the others, hope you don't stop your rads.  You are more than half-way(?) through.  (But, of course you know we are with you 100% in whatever you decide).  I am astonished that you were not told to not put anything on your skin.  There can be any number of substances, combined with the natural oils in your body that may, just in my opinion, cause a chemical reaction when irradiated.  Many on these boards put stuff on right after rads but I've not heard of anyone putting it on before.  Therein may lay the source of your problem, especially since you have sensitive skin.  I still have no problems with my skin so my rad onc still won't let me put anything on either before or after (just the breast - the rest of the body is okay).

    kjbell, I do know that they give extra days off when there are severe skin problems but they don't want to do that probably any more than once during the total treatment time.  That may be why they put people off at first request, awaiting a severe reaction.  My rad onc explained that they don't want to give any potential cancer cells lurking about the chance to bounce back from radiation and so 5 days on and 2 off seems to work the best.  The 2 off gives the "good" cells time to heal; they don't want any "bad" cells healing too often.  That's the simple explanation as my brain could comprehend but I would encourage you all to also ask.

     Elaine - you beat me to bed last night by about 15 mins, but I was looking towards the stairs to go up about 6:30!

    Okay, back to work - later all.

  • susan13
    susan13 Member Posts: 732
    edited April 2009

    Maria-I was told absolutely nothing on the skin prior to treatment.  After yes, I'm just using a 99% aloe vera gel.

  • shardon358
    shardon358 Member Posts: 2
    edited April 2009

    Dear Brandons Mom

    Why don't you want the tattoos....They let the radiation docs know exactly where to rad at.

    I just now made it thru my five years....hurrah...I did not have chemo, I had a lumpectomy and 7 nodes removed, I was er/pr positive...I took Tamoxifen for five years, and i forgot to tell you, I did have radiation for the 6 weeks...Yes I do have a little blue dot, between my breast, but when I see it...it reminds me that this was my life, and I made it thru...you can put a little dab of makeup on it to cover it...I wish you all the best in your life....I will pray for you...Please do not be scared of rad treatments...does not hurt at all..yes you get tired, and you may turn pink, but being a redhead my doctor recommended a cream biafine..and I didn't burn at all. Bless you and what ever your decision is, you will come out of this a stronger, and more compassant to all you meet...Sorry my spelling is terrible....Shardon358.....Sharon

  • shardon358
    shardon358 Member Posts: 2
    edited April 2009

    No nothing on before rads, but after..two or three times a day, everyday....I am a redhead and I burn easily, but doctor suggested biafine cream, it worked great for me...But please remember nothing before your rads.

    Just made it thru my five years......I am a happy camper.....well I dont camp anymore ..so I am just a happy person.....lol

    Bless You.....Shardon358.....Sharon

  • Lainey64
    Lainey64 Member Posts: 740
    edited April 2009

    I don't put on anything before rads.  I put aloe vera gel on at night after my shower and then again first thing in the morning.  So far no skin issues!  I'm sooo tired today.  I just had a really big lunch though so a nap would be good right about now.  I have to get another simulation done today.  They said I will not be getting another tattoo but they are going to mark me and put some plastic tape somewhere on it to keep it from coming off.  I think it must be my axillary scar that they are planning to zap. 

  • Britt
    Britt Member Posts: 731
    edited April 2009

    Aha!!!! Yes!!! Now I know why this has happened.

    When I resume my rads next Monday I shall wear NOTHING on the affected area.

    I am also going to question them about allowing approved creams/lotions on the affected area prior to treatment. 

    Patoo, you are right. I am more than half-way through and I do want to get this over with.  Now I realize why they gave me the five day "radiation vacation" - they know they were wrong!

    thanks, everyone!

    Maria

  • dkerler
    dkerler Member Posts: 75
    edited April 2009

    Britt- I was told not to use anything before the daily rads but 2 lotions on 3 x a day after. So far after 15 I'm still not red or sore. 18 to go.

    Sharson 358- Congratulations on your 5 year mark. We all can't wait to be there in about 5 years too.

    Debbie

  • CanItBeTrueNH
    CanItBeTrueNH Member Posts: 86
    edited April 2009

    Lainey64-  a nice cold, very cold Blueberry Beer a day helped my tummy feel better.

  • eadsla
    eadsla Member Posts: 217
    edited April 2009

    Hey everyone!  Wow, I had a lot of reading to catch up on.  Welcome to all new members!  I just had #15 of 33.  Almost halfway done.  At first, 6 weeks--everyday for 6 weeks-- seemed like something I wasn't going to be able to handle.  But the next thing you know, you're almost halfway done.  Elaine, I can't believe how close to the end of this you are!  The closer you come to the finish, the closer the rest of us do as well!

    Britt, I have to add that I was also told nothing for four hours prior to treatment.  I always saw it the same way that you don't want to put baby oil on your skin when sunbathing as it tends to intesify the suns rays on you skin.  And from what I've read on other rad boards, having a break if your skin is not reacting well is also an option.  Although most reactions seem to have that 5 day threshold.  Your skin is reacting to whatever was done to it five days ago, so it won't get better overnight, but you will eventually get the benefits of healing by taking the time off. 

    So far, I've only been using Udderly Smooth twiced a day.  I've also been wearing the bra/camisoles 24/7.  I'm a 36A, so I don't have much of an overlap, per se.  but I also find that moisterizing a lot with the camisole and having the camisole absorb some of the lotion also helps to keep the area moisterized.  Don't get me wrong, I don't saturate it or anything like that, but I am pretty generous with the lotion.

    Shan, way to go on the gazebo!  Now when you get exhausted, you'll have a lovely place to veg!

    Also, been noticing that my hair is coming in a a fairly rapid pace,  Last night, I was watching Obama speak about the Swine Flu situation(btw...wtf?), and I noticed that our hairstyles seem to be quite simillar!

  • Anonymous
    Anonymous Member Posts: 1,376
    edited April 2009

    Hey Pink Ladies! (haha!)

    Tomorrow's my last "regular" radiation treatment, and on Thursday, I start the first of my last six boosts! After that, I'm SO done! 

    My rads onc told me that I could use RadiaGel before my treatment without any problem, but the Aquaphor or anything else would mess up the treatment. At this point in the game, I really don't think that ANYTHING would prevent the peeling, burning, blisters and raw spots on my nipple and areola. If I was sure I wouldn't get banned from the board, I'd post a photo or send interested parties a picture of what the skin may look like when you've got seven left! I don't have sensitive skin, as I've got a hefty load of Native American blood in me... My underarm is sore and peeling, my nipple looks like it's got a bad case of road rash no matter HOW much Aquaphor I slather on at night...and it just looks plain ugly. 

    BUT...the end is in sight! I can do this...and so can you!

    Love, love, love...

    Robin

  • susan13
    susan13 Member Posts: 732
    edited April 2009

    Robin.... one word OUCH!!!!!!

  • bethaib
    bethaib Member Posts: 125
    edited April 2009

    Wow I am so sorry for those of you experiencing problems with your skin. Robin you are so close...hang in there...

    I am on day 12 of 30. I have started to turn a little pink. So far so good.

    Brit- My doc said no creams on the rad side 4-6 hours before treatment. But to use cream (again my choice of Utterly, Biafine, or Aquaphor) 3 tx a day. I started two weeks before rads started. I have been managing to do this almost every day, but there have been a couple times I have only done two.

    Got a call today at work that the machine had to be repaired where I normally go and I ended up going to their other facility. Still in the same city, about the same amount of time to get there from work, and almost the same amount of time to get home (about a half hour for me).  So I get to this new place and meet the guy who gave me the directions (one of the rad techs)...and man was he cute! Made me think of Dr Love : ). He said he is filling in later this week at my normal facility and he would see me then...can't wait lol

    Off to pick up my daughter......

  • Anonymous
    Anonymous Member Posts: 1,376
    edited April 2009

    I feel so good today! I just came back from working out for an hour. I nearly took a nap instead, but I am now glad I chose the exercise. It lifts my mood.

    After 9 Tx, mild fatigue and tanning are my only symptoms of rads. I have been using Udderly Smooth twice a day and going braless. When I still wore my mastectomy bra, I had big time redness and soreness wherever it touched my body on the rads side. 

    Robin and Maria, I am thinking of you with your skin SE's

    Bette 

  • Lainey64
    Lainey64 Member Posts: 740
    edited April 2009

    Hi gals!  I had #22 today.  They did a simulation and put some marks and tape on me to prepare me for the "boosts".  My doc ("Mr. Beautiful") I shall call him, came in during while she was figuring out where to place the marks and he examined me.  He said my skin is looking good.  I asked him about the nausea and he doesn't think it's from the rads.  Oh well...

    CanIt - I've never heard of blueberry beer before!  That sounds interesting!  I can't wait until I will be able to enjoy an ice cold beer again.  I've decided that will be my "prize" when I'm finished with treatments.

    Eadsla - It does go by pretty fast huh?  Your hair comment cracked me up.  Mine looks pretty much the same way, grays and all!

    Robin - Hooray for you!!!  We are all on your tail and catching up! :)

    Beth - you gals with cute doctors make me a little jealous.  But I have to say that mine is starting to grow on me. 

    Bette - Good for you!  Exercise makes me feel so much better even when I think I'm too tired to do it.

    Have a great night ladies!

    Elaine

  • BonnieK
    BonnieK Member Posts: 655
    edited April 2009

    Hi everyone,

    I've been catching up on posts and wanted to say that I'm thinking about all of you.  My first rads treatment is tomorrow, so most of you are WAY ahead of me and your experiences have helped me to get ready for this last phase of treatment.  I'm a little nervous, but guess that's pretty normal when starting rads.  My skin is fair and sensitive, so I've been using the vitamin e oil and aloe vera that the rads onc recommended.  

    Blueberry beer sounds very mysterious -- what is it??

    Take care.

    Bonnie 

  • BrandonMom
    BrandonMom Member Posts: 412
    edited April 2009

    I was told nothing right before rads, specifically, you should not be able to feel the lotion - it should be all soaked in.  When I pushed for more details, like the night before, or a few hours before, the doctor kind of shrugged her shoulders and said probably a few hours before.  You just shouldn't be able to see/feel the lotion. 

    That said, I am not a regular lotion user, so I have only used lotions on occasion.  So far, my skin looks good.  You can see the square where it is zapping. I have one spot that is bumpy, but it is in a location where I have feeling and I think I'm probably just scratching it a bit.  Given that, my biggest advice is just don't touch it!  The nurse said to use some steroid cream at night on that one spot.

    shardon358 - I didn't want tattoos because the markers also let them know exactly where to zap and when we are all done, I just take off the tegaderms, and they fade away.  I've been very happy with my choice.

    I

  • Debbi5108
    Debbi5108 Member Posts: 182
    edited April 2009

    My 4th one down 26 to go, Should I be feeling achy and kind of yucky already ??? Cause I do, Hurting is the worse is it from the Rads or past chemo just started doing this.

    Thanks Deb

  • caligrlof68
    caligrlof68 Member Posts: 323
    edited April 2009

    Well, I'm 7 down with 27 or so left. I'm slathering on Emu Oil and 100% aloe about 3 times a day. I'm forgoing bras at every opportunity, opting instead to wear a cotton tank top. So far, so good. A little pinkness, but no pain. No aches. No illness. Just a tiny bit tired at night, but that's cuz my job makes me get up at 5:30 a.m.  So, I have a question....

    Every other treatment they put this gel pad on the treatment area during my zapping and they call it a boost. Does everyone else get that as well??  

  • Anonymous
    Anonymous Member Posts: 1,376
    edited April 2009

    I get the same thing, caligirl. My techs called it a bolus. They said it focused the radiation closer to the skin.  When I asked why, they said doctor's orders. So I am going to ask my rad onc for a fuller explanation next time I see her.

    I am also tired, but have the luxury of sleeping in until 7 or 8, which is when DH gets up after his 3-11 nurses job. We then have breakfast together and he takes me to rads. Most of the time he cooks breakfast. I feel cared for and a little spoiled.

    Tonight my skin is warm and tender so no bra for me. I am going to put some aloe vera gel on.

    Bette 

  • kjbell
    kjbell Member Posts: 974
    edited April 2009

    Good luck tomorrow Bonnie! It is a little intimidating at first, having that big machine over you and such, but it is so much easier than chemo. Hope all goes well!

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