Summer Rads 2014

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  • jbokland
    jbokland Member Posts: 890
    edited July 2014

    my Playbook for the  next 6 1/2 weeks. BTW. Those are deflated from 800 to 250. 

    image

  • Rosiesride
    Rosiesride Member Posts: 513
    edited July 2014

    Well, I have had a major reaction after only 12 rads...it looks like it may look towards end of treatment for some...so today docs said I should not get rads or tomorrow and see doc and physicist on Wednesday so they can both look at me when I am on the table...one doc said SOME people have something genetic in DNA that makes them react to rads...no test for that...he felt my reaction is accelerated...I just want them to figure out a plan for me...maybe I won't need as many rads???  Not sure and won't know til wednesday...I do hate to be held up on treatment as I was hoping to start back to school mid august...just not sure how this all will pan out!!

    Radioplex prescription creme has helped a lot...I do use aquaphor for the nipple...my back is super red too...anyone ever hear of the DNA genetic thing and reaction to rads??? 

    Sunshineinky...how far into rads were you when your skin changed all of a sudden??  I need to go back in previous posts...Rosie

  • Sunshineinky
    Sunshineinky Member Posts: 461
    edited July 2014

    image

    Rosie I started noticing burning around the same time as you.  However the skin didn't bust open until rad 20. Once we had a treatment plan in place mine healed very quickly.  I used silvadene until we got to the boost.  After boost started I used miaplex on the open areas which is like a bandage and lidocaine gel for pain on the unopened areas. My boost were no where near the area that was so damaged.

    My RO said that with my olive skin tone they would have never guessed my skin would react the way it did. So I guess maybe some of that could be genetics.  

    The above is a picture of my skin at three different stages. I had what my RO classified as a "severe burn" it hurt like crap. The first picture was at rad 20, the second picture was rad 25 and the last picture was my last day of radiation so I actually left fully healed with the exception of skin that needs to sloth (if thats a word lol) off. By far, the first picture was during my most painful time. I started using the miaplex the day of the 2nd picture and I only wore it 4 days total which was two treatments. The day they put it on, I had almost immediate relief.

    Anyhow, not meant to scare anyone but I think it's important to see what may be normal or not normal for some.

  • Deblc
    Deblc Member Posts: 479
    edited July 2014

    Thanks Rettemich re the aloe question. Unfortunately I don't live in the US, and so far cannot find any alcohol-free aloe in the stores here. However, did I also read somewhere that you can use the aloe plant itself? That I can get! And if so, do you just cut it open and slather on the gel?

    Sunshine that looks really painful. I think you are finished now? Hope you are back to normal and pain free!

  • Crazywabbit
    Crazywabbit Member Posts: 563
    edited July 2014

    Lisa I just had 3/5 boost today and have not noticed any changes to the area. My collar bone area is very deep red, like raw meat but no en area,  I have gotten little red spots at every hair follicle on my breast. I feel like I have measles.  I am attaching a picture which looks worse then it really is, I have a lot of brown freckling at the base of my neck which has gotten darker with the scattered Rads I think.  My sternal area so pretty red from the IM node RT. Nipple is holding up remarkably well since it is the center of attraction with the boosts. Lovely little port sticking up on the other side. 

    image

  • Sunshineinky
    Sunshineinky Member Posts: 461
    edited July 2014

    Wow Barbara your neck looks like my underarm did.  Are you in any pain? 

    Deb can you order online from Walmart.com and have it shipped? If not I've seen several that used the actual plant.  Oh and I feel great!

  • Deblc
    Deblc Member Posts: 479
    edited July 2014

    Sunshine, I only have 5 rads left so by the time I get it from ordering online, I will be finished. So will try the plant. 

  • Crazywabbit
    Crazywabbit Member Posts: 563
    edited July 2014

    Sunshineink - not really painful except when the intense itching occurred. It is painful if I rub or scratch it but thankfully it is not open. That picture was this morning, 1 weeks after the last RX to the collarbone area.  I suspect major peeling will occur in that area. 

  • Carpe-Diem
    Carpe-Diem Member Posts: 49
    edited July 2014

    Bravo Lisaj514 - As a former runner, I love seeing other people enjoying running. My hat is off to you for running during radiation. You look GREAT!! Keep up the good work.

  • 3rdtimenow
    3rdtimenow Member Posts: 256
    edited July 2014

    Deblec, My doc said the plant is actually better, I just wash the leaf and keep it in the fridge in a plastic baggie, I cut a small piece remove the sharp ends  slice it open and make some xxxs to release the gel and slather it on. Stephanie

  • Rosiesride
    Rosiesride Member Posts: 513
    edited July 2014

    sunshine...thankfully no open areas yet but I wanted to get ahead and know what their plan is if it does happen...my back area seems to be the most uncomfortable but thankfully it is not constant...I am sure by my 20th rad it would be open like yours!!  I am also olive complexion but it doesn't matter...nurse said it gets bad for 2 weeks after you end and then starts clearing up...glad you are on the mend and thanks for the pics...

    Deb...I loved the plant...just cut a leaf open and lots of gel comes out and you can squeeze it out too...very soothing. Rosie

  • Deblc
    Deblc Member Posts: 479
    edited July 2014

    thanks Stephanie and Rosie.

    Rosie..so sorry you are having such a hard time. Isn't it odd that you are having a reaction on your back, as that is not being irradiated?. I ask because I am finding my back is also more itchy and sensitive, which I find very strange. 

  • Rosiesride
    Rosiesride Member Posts: 513
    edited July 2014

    deb...RO said it is exit radiation..so I am thinking the "beam" goes out the back! My back has a large rectangle of dark red and it's as irritated as the front...it's just freaky. I out my radiaplex in the back as well.

  • AnnBR
    AnnBR Member Posts: 853
    edited July 2014

    Way to go Lisa! I love the sign on your back :)

  • Crazywabbit
    Crazywabbit Member Posts: 563
    edited July 2014

    Rosie, if you are getting RT to the supra clavicular node it goes out the back. I also got a short zap from the back toward the front to that area.  I have a similar light red rectangle on my back also. 

  • Sunshineinky
    Sunshineinky Member Posts: 461
    edited July 2014

    My arm/back area is still really numb from my surgery.  Hopefully I'll get feeling back into it at some point.  How's yours Barbara? I see you had a lumpectomy too. 

  • lyzzysmom
    lyzzysmom Member Posts: 654
    edited July 2014

    Rosie, So sorry! I hope they can work something out soon so you can get back on track and get this thing done. I never knew the radiation went all the way through.

    Barbara and Sunshine. Those photos look painful . Sunshine, the improvement between day 20 and the end looks incredible. Its amazing how quickly skin can heal. 

    JB, I looks like they have put an awful lot of marks and stickers on you. Do they expect that to stay on in the shower? 

    Although I am getting pink the area around where the tumor was looks pretty much like its been missed so far which seems a bit odd but I guess it will be different when they do the boosts.

  • Crazywabbit
    Crazywabbit Member Posts: 563
    edited July 2014

    under arm is  completely numb as well as about 3-4 inches on the back of the upper arm.  Really helps not feel the burns in the axilla around my scar area.  The area just above  the numb zone in the upper arm is painful when I press in the area.  The PT I saw thought the painful tissue  was from the nerve damage during surgery and could get better but the numbness would probably never change from what it is now, 7.5 months later. 

    I was told to only use an electric shaver under the arm since a regular razor could cut and never feel it. Then there would be the increased risk of infection due to the lymph nodes removed . 

  • tangandchris
    tangandchris Member Posts: 1,855
    edited July 2014


    Sorry to ya'll that had the burning and irritation issues. I'm scared that is going to happen to me too, but I'm gonna just take it a day at a time. I am worried that I'm gonna have issues because of my port. My port is on the same side that is being radiated and each tiime the techs have noticed this they questioned it. My doctor says it won't be a problem, but I swear I already felt sore-ish after my first tx.

    I'm so worried about having a complication it is likely that I'm noticing things that aren't really there. lol I've had alot of issues over these several months.

  • Rosiesride
    Rosiesride Member Posts: 513
    edited July 2014

    Barbara...yes I do have rads to SC...just hope docs have a plan for me on Wednesday...he already cut off 3 whole breast when he saw me last week...

  • 3rdtimenow
    3rdtimenow Member Posts: 256
    edited July 2014

    I hear you tangandchris, I am worried too about complications. I have had previous radiation on the other breast and on this one as well, and I've been told rads are cumulative, praying for the best, but hard not to worry. We are in this together, hang in there

  • Brwneyedgirl
    Brwneyedgirl Member Posts: 113
    edited July 2014

    I am amazed at how quickly the skin healed in the pictures. I saw the RO after 10 full breast yesterday.  He said things look normal.  Well as normal as can be in this situation I guess.  I did notice how red the radiated area was last night.  Much more irritated looking than after last Friday's rads.  It looks much better this morning.  I do have a very tanned looking armpit and nipple.  The nipple is starting to feel uncomfortable all the time now.  The RO ordered a steroid cream for the rad area.  Not sure when to start using it.  I will ask tonight when I go for #11 of 16.  Have any of you used a steroid cream?  I thought is seemed an odd choice, but what do I know.

    Hope everyone has a great day.  D


     

  • rettemich
    rettemich Member Posts: 369
    edited July 2014

    The first is always the hardest. I was going through major hormonal crashing and cried through the whole thing. What bothered me most was the techs weren't even watching the monitors, and just told me to hold still, without realizing I was balling my eyes out. I was also upset as I was so opposed to rads to begin with. Barbaric. But the next one went much better. I wish I had asked for another team though. Once you start your routine it  goes pretty quick. You will be surprised how fast the time goes.

    I had heard that Tom's wasn't that good, so I tried one that is called Crystal. It actually works pretty good. I found it at a health food store. I think you can get it on Amazon too. I actually am planning to keep using it, unless I'm going to do something Really strenuous.

  • jbokland
    jbokland Member Posts: 890
    edited July 2014

    Retttemich,

    So sorry you were so ignored!  Lord, if nothing else the monitor should have picked up your erratic breathing while crying.  

    You must have felt terribly alone.  You are not!  You have all of the fine sisters on this board!

  • Macintx
    Macintx Member Posts: 118
    edited July 2014

    Ddgm, my RO prescribed a steroid cream (triamcinilone) to use every day during treatments.  Once after radiation, once at night.  I started on the first day of radiation.  She said she has had very good success with it.   I did #11/31 today, and so far no changes at all.  

  • jhodro
    jhodro Member Posts: 240
    edited July 2014

    Sorry rettemich! I think we are all extremely emotional so maybe they just get on with things - which isn't right at all. We're all with you!! Best of luck as rads continue!

    I don't start until August, but I'm getting quite an education by following this board. Only one more chemo treatment on 7/22 then I can get on with it! Yay!!!!

  • rettemich
    rettemich Member Posts: 369
    edited July 2014

    jbok, Thanks so much. I don't talk about it because I'm usually pretty easy going. Between the surgeries, Tamox kicking in, not wanting to do the rads, frustrated with my friends and family. Yeah I was pretty much a basket case. I was pretty upset that they didn't notice me. All I wanted was for someone to wipe my face. Wish I had asked for a new team. I had already complained about my setup to the head nurse, guess I didn't want to sound like a whiner.

    deb, you sure can it's even better. Yep just cut it open put a few cuts in it to loosen it and rub it on.

  • Sunshineinky
    Sunshineinky Member Posts: 461
    edited July 2014

    Hugs Rett! You should have said something and we could of talked ugly about them and made you feel better!! That's what us sisters do!

    Jhondro woohoo you'll be done before you know it. Bless your heart it looks like its been a long journey for you! 

    Ddgm I think Barbara (crazywabbit) had steroid cream.  I never used it but thought it was for itching! 

  • Crazywabbit
    Crazywabbit Member Posts: 563
    edited July 2014

    I only used the steroid cream for the itching, once that was controlled I have not used it. I use the aquaphor at night and California Baby daytime. Noticed some fine skin sloughing on the very red area, not much and very superficial. Hope it doe not open up more.

    I have two trays of baked goods ready to go in I morrow AM. One of almond pound cake and one of banana brea. Both plain and blueberry. I also made a plate of one piece each to drop off upstairs for my MO as a treat. 10 more hours to THE LAST RADS.

    image

  • lyzzysmom
    lyzzysmom Member Posts: 654
    edited July 2014

    Oh Rett, what a miserable bunch!! A little care and compassion from the medical staff makes such a difference when relatives are being a pain I find. 

     I could not keep my eyes open when I got back today.  I was
    working from home, or trying to and I had to lie down. Eventually I told
    them I was logging off for an hour. The good news is the benefits
    people actually approved my FMLA for up 2 days twice a month to take
    unpaid or vacation but as least the insurance will remain covered if
    I need it.

     I pulled my back just before rads started, only very minor but now I just can't get back into exercising and I know I must..My chest feels tight, from stress I think. I have had it before and had it checked out . Three years ago I had a panic attack and thought it was a heart attack. Felt very silly being take in an ambulance to the ER!! I just realized while typing this though that they did some tests and mentioned that one of my markers was a bit high.  I can't remember what it was called now but I remember that cancer was among the things that could elevate it. Hmm. They say that ILC can be slow and sneaky so I wonder now if maybe something was lurking back then.

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