March 2011 Rads

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  • gingerstx
    gingerstx Member Posts: 91
    edited April 2011

    14 of 36 left! 

    My rash seems to be under control after applications of sap from the aloe plant (I cut off a piece, slit the long way so I can have 2 halves, then I rub one half on the top rash and the other half on the bottom rash... ah, cool relief!) followed by a layer of hydrocortisone cream.  

    I had to have my xrays yesterday and thought I was ready for them.  I'd taken a 500 mg tylenol and had stretched my arms in hopes that would help.  I was laid out on the table and maneuvered into position when suddenly the lights flickered, then went brightly on and all the machine humming stopped!  They'd had a power surge so everything had automatically shut down.   While  I laid there for 20 minutes one of the techs came out, told me I could put my arms down, covered me with 2 warm blankets and talked to me, telling me what was going on and what they were doing while they worked through the procedure to turn the machines back on again.   Once everything was on again they had to reposition me and the machine so I could lay there another 20 minutes with numbing hands, getting xrayed and zapped.    When I returned to the dressing room, there were 6 ladies, some of whom I'd never seen before,  awaiting my return.   I got lots of sympathy hugs!  :>)

    Have a good one, ladies!

  • gingerstx
    gingerstx Member Posts: 91
    edited April 2011

    Oh, met with my MO again and she gave me a prescription for Femara.  Said the SE's were minimal:  achy joints and hot flashes and if they got to point where they interfered with my lifestyle she'd give me something to counter the SE or change me to another AI.  Anyone else going to be on this med?  

  • LovemyLife12
    LovemyLife12 Member Posts: 43
    edited April 2011
  • sandymess
    sandymess Member Posts: 299
    edited April 2011
    gingerstx: Once I finish Rads, I am going to go on something. Not sure if it will be Tamoxifen or Femara or maybe something else. I haven't done much research on this part of the treatment yet. I'm only focusing on one phase at a time, otherwise, I'll be so overwhelmed I might sink.Frown
  • GrandmaBubba
    GrandmaBubba Member Posts: 111
    edited April 2011

    Pam - I so understand.

    Today I am considering stopping rads. I have had to take two breaks now and on the current break I developed more blisters which have since popped. The pain is horrible and the delays are depressing. My thoughts are that if all the rads decreases my chance of reoccurence by 9%,but doesn't have any effect on survival rates, why am I going through this? DH is disappointed I'm considering this, but says it's my body. I have to work through all of this because I used all of my FMLA with my surgery. I have to have insurance. I am soooo tired.

    Love to hear anyone's thoughts on this.

  • marjie
    marjie Member Posts: 1,134
    edited April 2011

    COUNTDOWN = 8!!

    First boost today.

  • Teal3Pink1
    Teal3Pink1 Member Posts: 109
    edited April 2011

    gingerstx:  How scary with the power surge!  I will be starting Femara the day after I finish rads.

  • Teal3Pink1
    Teal3Pink1 Member Posts: 109
    edited April 2011

    Had the simulation for boosts this morning before rads and learned that I will go to a different machine to get electrons for the boosts instead of photons. Sounds so star trek. I'll search this site to find out more. In the meantime: does anybody know what that means?

    9/21

  • GirlFriday
    GirlFriday Member Posts: 461
    edited April 2011

    Grandmabubba: I'm so sorry you're having such a difficult time!  What's your count?  What does the RO say? I haven't heard of the 9% stat you're talking about, but man that sure doesn't seem worth it.  I'd consult your surrounding professionals and go from there.  In the meantime...Double check your protein and water intake...make sure you're getting enough of those so you can heal from the inside out!

    gingerstx: That totally sucks!  Mercury is Retrograde!  The lead doors started to close on their own on me this morning...and the techs were bracing for a fire alarm to go off...it delayed the process a bit, but nothing compared to your "extended vacation" in the rads room!

    Teal3Pink1:  I'll ask my techs about the photon/electron change They are awesome and explaining and educating me on the process. This morning I asked them about the RO that told her patient (can't remember who) that the folliculitis was just HER allergic reaction to the rads...but that's not true...the folliculitis is a direct result of the radiation.  It is expected as the cells break down...something about rads also produces hydrogen peroxide as things break down too...hence the inflammation...I'm researching more about it now.  I also asked them about the rads "bounce" that everyone has been talking about. They said the waves are concentrated enough that they do not "bounce"  anywhere. You can't have a shadow effect on any skin where the rads is not directly hitting.  I think it's interesting the "differences" of techs/RO comments.

    I think there should be more information available to us...like you should be able to pick up the basic info packet, and then the not so basic, and then the really specific packet...It seems like there is an effort to not inform us of what's really happening and we have to pursue all answers!

    28/33 Boost 1 tomorrow!  I'm really red, really sore, and my nipple that once looked like italian leather, is now spotted bright magenta where the skin has rubbed off...it looks like dinosaur flesh!

  • gingerstx
    gingerstx Member Posts: 91
    edited April 2011

    I'll be getting my simulation for my boosts tomorrow morning even tho my boosts won't start for another 10 days or so.  My tech said this simulation won't be as bad as the initial one.  For true?

    Interesting about the follicles but it does make sense. 

    GrandmaBubba I sure hope you can continue with your rads.. it just seems a shame that you've traveled this far on your journey and wouldn't be completing it.  Can you take a break?  A friend of mine got appendicitus during her treatments and had to be off rads for over a week... and then they put her back on again, so perhaps this would be a viable solution for you.

  • thegood5
    thegood5 Member Posts: 478
    edited April 2011

    Finally had my simulation today, start rads on the 18th with my "dress rehearsal" being next Friday.  I guess I should be moving on over to the April rads thread, but I just want to thank all of you ladies for all of the wonderful info you have given.  I went in there today feeling like I knew exactly what the next thing to come was going to be.  One more question...how long before you start should you start preping your skin, if it all?  Should I be applying baby aveeno now or is it too soon?

  • GirlFriday
    GirlFriday Member Posts: 461
    edited April 2011

    thegood5:  I don't think there is a too soon.  I was told it really doesn't matter how your skin reacts to the sun...it's more about the elasticity of your skin.  So if you start lubing now, and giving the skin a healthy boost, it seems to fit that you'll do better during rads.  I have always lotioned from head to toe after every shower for years, and I think overall my skin did really well. It wasn't until my 26-27 session that I had any skin breakdown in terms of peeling.  I got the unavoidable rash, but it's still held together.  I think you'll do fine, especially if you are extra careful about clean skin going in to the rads appt! Also consider, you've been involved and mentally preparing for several weeks.  I think that should help you even more. I wish I had been a part of this earlier!

  • pumela115
    pumela115 Member Posts: 231
    edited April 2011

    GrandmaBubba, I'm so sorry you are having a bad time i sure understand. I think you should take some days off to heal and maybe they can start back up again. Talk to your RO about it, i'm sure there is some way to work it out. I agree you have come so far. They showed me the mold for my boosts today, but since i missed yesterday they won't start until tues now. Oh well, the techs said it was good for my mental state to take the day off. I really agreed, i feel better today. My RO said they don't have to do simulations for my boosts, they did them already. Wow i don't even know when. LOL, i don't have a clue.

    Teal, the techs told me i would be having photons for my boosts, i don't know what that is either, but now i will ask.

    Marjie, YOU GO GIRL!!!  so was it easier?, quicker?

    Hope everyone is having a good day!!!

                                                                          Pam

    P.S. GrandmaBubba, i have FMLA that is intermittent, so if i need a day off during treatment it doesn't go against me. I don't know if it's different from state to state. I also have to make sure i work 80 hours a month for my ins. but they will let me use vacation hours if i don't work enough. Best Wishes!

  • mommafluff61
    mommafluff61 Member Posts: 40
    edited April 2011

    Marjie...I thought my orange tabby was big! you "win the prize" for the size of your kitties! They are adorable!

    I am on #16 with 19 more to go (5 of those are the boosts)

    When I first started the radiation, one of the techs told me to get as close to 100% Aloe as possible (no alcohol) and use it all the time. I found 99% Aloe at Trader Joe's for only $2.99 a bottle...I really do feel like I keep on "cooking" after I leave but so far, I am only REALLY tan under my arm and on my scar. The doc hands out Eucerin cream, but I prefer the aloe.

    I have very clear 1/4 in hair! I ordered a black visor with blond hair from "flairhair.com". I wore it yesterday (with a stretchy headband underneath) and got a ton of compliments...it is SO fun!
    I also got a beautiful $72 headwrap from franceluxe.com for FREE! Just FYI! No wigs for me! Too itchy!

    No after treatment for me because I'm a triple negative..just keep thinking positive thoughts and enjoy every day!

    You ladies are the best!

  • Teal3Pink1
    Teal3Pink1 Member Posts: 109
    edited April 2011

    GrandmaBubba:  Shame on that Burnie! I am so sorry that you are having a rough time and wish I had sage words to share with you. All I can offer are tender thoughts and cyber-hugs.

    GirlFriday and Pumela:  Thanks for checking with your techs. I read somewhere that electrons don't penetrate as deep as photons. This is all fascinating stuff. It would be interesting to know more about how that all works. And it seems to me that it would make more sense to go after any micro cells hanging out near the tumor bed first and then take out any strays.... I'm sure there's a reason the boosts are at the end.

  • marjie
    marjie Member Posts: 1,134
    edited April 2011

    GrandmaBubba - Thinking of you...hope things start getting a little easier for you!

    Pam - yep! today's boost was 3 quick shots aimed more at my scar/tumour area rather than the 2 longer shots that covered my whole breast. Considering it was the first one, they set it up pretty quickly as well.  I am still on the same machine and didn't receive any extra markings - but apparently there are two different options for boosts.  If they were going to the other option, I would have gotten more markings and it would be one quick shot on a different machine.

    It's exciting to know that my last day....next Friday is actually in sightLaughing

  • grannyjuju
    grannyjuju Member Posts: 8
    edited April 2011

    Hello ladies, I had my 15th treatment today. Tomorrow will be having

    my "boosts" simulation. Although the boosts will not start for another

    couple of weeks. So far my biggest issues of burned areas are my chest

    and under my breast. . . Both are itchy and ouchy. I can only imagine

    what it will feel like by the end of next week.

    My other SE from the radiation have been extreme fatigue and a little

    bit of nausea. Anyone else had a sick tummy? Been more tired than

    usual? Been taking at least one nap a day since I just started Leave

    from work. I have been using lots of aloe Vera as well, oh yea and I

    ditched my bra for a while. Lol,

    one more quick question. How many of you lovely ladies have decided

    to take and or not to take the tamoxifen/arimidex?

    Thanks, hugs and prayers to all.

  • 3teacher
    3teacher Member Posts: 42
    edited April 2011

    Done with boost #1! Tech said they use electrons which do not penetrate as deep. She told me this as she was attaching a special machine part- Darth Vader looking, of course. I'm on my same Trilogy machine, just with this special "attachment".

    The actual "beam" took like 30 seconds. Having both sides done to my BiMX scars. Only one "beam" per side, unlike the regular treatment which was 3 beams per side. Wanted to count exactly how long the beam was today, but was too nervous and had my eyes closed the whole time. What took so long was the set up. They had like a template from the CTscan thing and they traced the field onto my skin, then called in the RO to verify, etc.etc. When leaving the tech said to try and be careful with my creme  and not take off the markings and it would be much faster tomorrow. For goodness sakes girl, I am lubing up like mad and now you tell me to watch it. So I didn't lube right on the drawing but everywhere else.

    Julie47: I didn't have any nausea (unlike chemo!) but in the very beginning the RN, who's also a dear friend, asked if I had any Compazine leftover from chemo, for just in case. So maybe that could be a SE. Now I did  have a yucky tummy in the beginning for several weeks, but I attributed that to nerves. Seems like every Sunday night/Monday my tummy is in knots. But then again, chemo really tore my tummy up, so I might just be more sensitive in my uppper/middle digestive tract.

    Mommafluff: I use a similar product Fruit of the Earth/cheap that's 100% Aloe at night. It's a big mess, but I really think it was worth the trouble.

    Grandmabubba: Oh, please try and hang in there. Not sure about that 9% figure. Can you get a RX for Silvadine, which is for bad burns? How many more do you have?? Praying for you right now!

  • GirlFriday
    GirlFriday Member Posts: 461
    edited April 2011

    julie47:  I have hardly any appetite, but then when I get hungry I almost lose control. I really only want to eat sweets and I have forced myself not too.  Somethings won't settle for me now either, I get indigestion, and I wasn't prone to that before.  Sometimes I get nauseous but I feel that's more of the semi dizziness I get from fatigue.

  • shooshoo23
    shooshoo23 Member Posts: 96
    edited April 2011
    julie47- I have been a little nauseated. Nothing like chemo but just a little yucky. It's worse if I eat right before I go to rads. And as of right now I will be starting Tamoxifen after rads. I've read some scary things about SE's though so I'm worried. I had such a hard time with chemo I don't know if I can handle bad SE's for FIVE years! My onc told me I was 98% ER+ and that the Tamox would be the most important part of my treatment. I have had panic disorder for years and had really bad attacks during chemo. I have read Tamox can cause anxiety and panic attacks. Not sure if I will be able to handle it?!? We'll see.
  • shooshoo23
    shooshoo23 Member Posts: 96
    edited April 2011

    grandmabubba- thoughts and prayers to you. I almost didn't do my last chemo tx because it was soooo awful. My husband and boys wanted me to finish. I did end up doing the last tx but it was because I thought if I ever had a recurrence I would blame myself for not doing everything I could the first time. That was just my thought at the time, I completely understand why anyone might stop treatment. It can be really brutal. It is a personal decision and you have to do what is best for you. 

    (((hugs))) 

  • Sereena
    Sereena Member Posts: 99
    edited April 2011

    23 down and 7 to go, and yes I am counting......today was the first of 8 boosts! I am so glad to give at least half my boob some relief. Red skin, brown skin, blistered skin, itchy skin....ugh, I will be glad to be done with this. I have olive toned skin and enjoy my summer tans so I really didn't think I would have such a severe reaction to the rads.

  • gingerstx
    gingerstx Member Posts: 91
    edited April 2011

    My rash is doing better!  I'm amazed and have to give credit to the applications of sap from the Aloe plant I'd been given.  I've been applying it several times a day for the past two days, just slitting an aloe piece in two and rubbing each half right onto the rash, and instead of looking angrier this morning, my rash seems to be fading! 

    I'm getting my simulation for boosts today, after my regular zaps, and I'm not looking forward to it because of that dreadful arm position I have to hold!   My tech assured me it isn't as bad as the original simulation, but I'm still anxious.   Hope they have a silver bullet for me to bite down on!

  • cmbear
    cmbear Member Posts: 1,086
    edited April 2011

    Tomorrow is my last TX. Cannot believe the day is finally here! The are that is not being "boosted" is still cooking, raw, red and angry. My skin is dark red has started pealing and now the new zkin is pealing. Talk about owwch!!

    My appetite is nonexistent too. But still gaining weight. Blame low thyroid on that. Can't wait till my chest heals so I can start working out-- no excuse then!!

    Have a wondeful day ladies, I'm off to work!

  • GirlFriday
    GirlFriday Member Posts: 461
    edited April 2011

    29/33:  1/5 boosts completed!  Yahoo. Boosts are shorter!  and the are electrons not protons...apparently protons pass through the skin, which is why the machine is never directly pointed at you, because they would pass completely through your body.  Electrons only go so far, so a calculation is made to hit the tumor bed but not go through to the lungs.

    shooshoo:  I've heard that many tolerate Tamoxifen well after a brief (1-3month) adjustment period.  There's another thread...bottle o tamoxifen where they discuss the SE and issues.  I can't remember if I've seen you on it, but I can't remember much of anything lately.  Don't work yourself into panic over it.  It's a safeguard, and considering what you've already gone through, it should be a breeze.  (this is what I keep telling myself!)

  • sandymess
    sandymess Member Posts: 299
    edited April 2011

    16/33 today. Just about halfway there! I'm starting to tan and there's a little pink under my arm.I am SO jealous of those of you who are almost done!! But I know I'll get there before I know it. 

    gingerstx: Glad to hear your rash is better. I think I'll see if I can find an Aloe plant, too. Sounds like it really works.

    shooshoo: Would it help your anxiety to try and just focus on one day at a time? I know we need to be prepared, but maybe it's too much for you to worry about the next step until you are there--or almost there. My SIL has panic disorder, too, so I can relate to what you're going through. Not fun!

  • GirlFriday
    GirlFriday Member Posts: 461
    edited April 2011

    sandymess:  It goes fast!  You'll be there soon enough.   Sun in Maine today!  Don't you think we should have a party?

  • sandymess
    sandymess Member Posts: 299
    edited April 2011

    GirlFriday: We should definitely have a party! It's going to be in the high 40s today, too. Maybe even 50 degrees. Whoohoo!! People are gonna be breakin' out the shorts and sandals any day now!

  • LovemyLife12
    LovemyLife12 Member Posts: 43
    edited April 2011

    3 to GO!!!

    GrandmaBubba- Hopefully you will feel better soon.  I think you should definately talk to your RO.  HUGS to you...

    Thinking of you all.  YOU CAN DO THIS!!!!

  • thrmine
    thrmine Member Posts: 98
    edited April 2011

    9 to go! I am in countdown.   Yippee skippee.  4 regular doses and 5 boosts and I have no idea what the boosts are.  Just so glad to be winding down.  

    I think my miracle med has been Miaderm.  

    Alice 

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