January 2012 rads

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  • anafoefana
    anafoefana Member Posts: 164
    edited January 2012

    J-bug, thanks for the link.

    Athatbascan, I too was really concerned about rads for a while.  The nurse who did my mapping told me that you usually hear the horror stories, but most people go through it with little consequence.  She said most people do get a little pink, but they do fine.  It was reassuring to me and I am hoping that if I am proactive with the lotions, I will do okay. It is only 6.5 weeks, and we can do anything for a short time!!!  I am sorry for your burns and hope you find some relief!  I have heard from others who have been through it that sometimes it helps to stop for a few days to heal if the burns are really bad. 

    Maureen, I share J-bug's concern.  Chemo is scary, but the alternative is scarier.  I also agree that being brave does not mean you are fearless.  I was and still am scared!  Every step is scary, but in the end, we get through it and look back and feel like perhaps it was not as bad as we thought it would be.  Not a walk in the park, but doable.  In any case, we will do this together and get through it too!!

     

  • J-Bug
    J-Bug Member Posts: 626
    edited January 2012

    chef127: I noticed that you deleted your post that anafoefana and I replied to. I hope that I did not offend you. I was responding to the statements that you made about fear, thinking that you were not doing chemo out of fear. Now I see from reading some of your other posts that there is more to that story, and you did consciously make that decision. I am sorry if my comments were interfering with that choice. If I had known the background, I would have not made any comment. I am sorry if my comments were offensive. That was certainly not my goal.

  • newksmom100
    newksmom100 Member Posts: 55
    edited January 2012

    Marilyn and Anafoefana thanks for your posts.  Sometimes I think we all feel like we are on the merry-go-round alone and it's nice to hear from others.  My best friend is an 11 year breast cancer survivor and she of course has been right here with me, but our cases are so far on the opposite ends of the spectrum that the only real connection is that we bost have/had cancer.  She is DMX, I am lumpectomy, she is chemo only and I am rads only.  I don't know anyone who has had rads, so have no one to talk with besides you ladies.  Read one other forum here regarding radiation and it was so depressing that I could not sleep.  Decided that those were the ladies who have had a hard time and while I feel for them (and I truly do), I MUST  keep a positive mind.  Biopsy was painless, lumpectomy was generally easy, so have to assume  that rads and tamoxifen will be bearable.  So, thanks for your input and honesty. Take care -

  • Ralsper
    Ralsper Member Posts: 352
    edited January 2012

    I had my rads mapping on Friday. They are radiating my left side and I lay on my back while they put both my hands in a holder on top of my head with a mold that was made for me. My RO asked me: "Are you comfortable?"... "Am I supposed to be comfortable?" I answered, I don't think anyone is comfortable in that position and I was in a terrible mood. He finally correct himself and asked: "Are you in pain?". Then he suggested that my TE should be removed, so my skin doesn't get too damage. Well, I had this conversation with my PS 8 months ago, so if the TE does not interfere with the main purpose of the radiation and my RO wants it removed for cosmetic reasons, he should discussed it with my PS as I asked him to do it 2 months ago!!! Anyway, he finally called my PS and he said that he prefers not to remove my TE and I trusted his opinion completely. I will have 25 rads and no boost since my RO said that there is no evidence that after a mastectomy the outcome will be different and he wants to prevent more damage and SE's. Definitely, I need to work with my treatment and not against it, so I better get in a better mood before my first rad, which will be sometime next week. Keep positive!

  • Kayce234
    Kayce234 Member Posts: 249
    edited January 2012

    Wondering if anyone can tell me how many tattoos they put on.  I go Tuesday for mapping then off and running.  I've been reading about the creams and am going to start tonight with the lotions - think i have some Aquaphor in the house.  Sounds so far like most are doing well and I hope it keeps up for everyone - I've been a bit nervous about the rads.

  • J-Bug
    J-Bug Member Posts: 626
    edited January 2012

    Kayce234: I received four tattoos. One on breast bone, one right about where they put their hand for CPR. The other two are on the sides right around where my drains were for bmx. They are smaller than my moles, just a tiny black dot.

  • tnhelen
    tnhelen Member Posts: 63
    edited January 2012

    I've been a little more tired this weekend but I don't know if it's related to the radiation.  I hope it goes away because I sure don't like feeling like I have run a marathon.  My hospital is really close.  I was going to go to Nashville but talked to the doctors and they said the hospital near my home was fine.  Iet is Sarah Cannon and the team is wonderful. 

  • twistedsteel
    twistedsteel Member Posts: 156
    edited January 2012

    I just wanna say that my zaps are quite long compared to what you guys are reporting. Like I count up to 40 or 50. And my skin is so red in areas that it is almost purple. Tomorrow is 21 of 25. And my RO was on the fence about boosts and then we decided to do the 5 of them. I may need a break after my 25 are done. My mastectomy incision site was not at all healed when they started and is now yucky oozing and very sad.

  • KeepingFaith69
    KeepingFaith69 Member Posts: 508
    edited January 2012

    I'm meeting for 'markup' tomorrow.  20 sessions to start next week.  Second time in the same area in 10 months.  I am praying for and visualising a path made easy.

  • findingsolace
    findingsolace Member Posts: 17
    edited January 2012

    Hi there Everyone- mind if I join your group? I finished 6 rounds of TCH January 6th and get my mapping done Jan 13th, then on to radiation for 6 1/2 weeks. I wanted to get this done with so asked if they could move up the time and they said fine. Do you know anyone who started radiation before 4 weeks after chemo. I think I will start the week of Jan 23, which may be only 2-2 1/2 weeks after chemo. I am all for doing it but concerned now I am pushing it. They also said, no creams, lotions or anything...just let us see you each week and advise you. Everyone else seems to be using something. I trust them but want to be pro-active. Glad to see some familar signatures.

  • curlywhitedog
    curlywhitedog Member Posts: 3
    edited January 2012

    Hi AussieKate:

    I'll be starting radiation later this month, have my mapping session scheduled for the 18th.  Some say no side effects to speak of, others say lots of tiredness but I'm optimistic I'll fall in the former category and not the latter.  I'm much more concerned about the side effects of the hormonal treatment but should know more about that later this afternoon when I meet with my medical oncologist to discuss my situation and get his recommendation.   

    Happy to meet you and the others who are sharing this journey. 

    Maria

  • Momine
    Momine Member Posts: 7,859
    edited January 2012

    OK, got the cream my doc prescribed. It is a mix of a cream that contains vitamins A and B5 and a cream that contains the steroid budesonide. 

    Has anyone else used these kinds of creams? Anyone know of anything I should be concerned about with the steroid cream (that scares me a little). 

  • J-Bug
    J-Bug Member Posts: 626
    edited January 2012

    findingsolace: There's that 6/10/11 diagnosis again! Welcome! I think that doing radiation too close to surgery is more of a concern than too close to chemo, but maybe there is someone in the group who has more of that experience. The doctors asked me to wait at least four weeks after surgery so that I could lay with my arms above my head. I could not do that any sooner and had to work with a PT to accomplish that. Also, they are concerned about the skin healing properly from surgery.

    My RO has said that I will not need any creams or ointments. They want to give me the the things I will need for that. They even gave me a deoderant that they want me to use. : ) 

    Dress rehearsal today!! 

  • Amelie_Rose
    Amelie_Rose Member Posts: 106
    edited January 2012

    Hi everyone.  I posted at the beginning of this thread and have been following ever since.  I had my first treatment last Wednesday, so 3 total last week, and will leave shortly for my fourth one today.  So far, so good.  Everyone is very nice at my center and the treatment is painless, but I am still scared.  It's a different kind of fear than I had with chemo.  No part of this journey is easy.

    Ana, it's good to see you on this thread.  We'll get through this together. Findingsolace, I haven't heard of a set waiting time for rads after chemo.  I think it depends on everyone's situation and doctor.  For me, there was a 4-week interval; but I had an unscheduled biopsy in between after which I really wanted to spend the holidays in peace.  I finished TCH on 11/29 and started rads on 1/4.

    Twistedsteel, I hope your skin starts healing soon; maybe your doctor can prescribe  a cream that works for you.  KeepingFaith, I didn't think it was possible to be radiated twice.  Are you being radiated on the same side?  Curlywhitedog, I too am quite concerned about the effects of hormonal therapy.  I have been holding off starting, but suppose that I should begin soon.  Have you started yet?

    Hope everyone has a good day/week.

    Amelie 

  • Ralsper
    Ralsper Member Posts: 352
    edited January 2012

    Hello Everyone! As I mention my RO said that I will have just 25 and no boost since after mastectomy there is not data proving that boosts does reduce local recurrence, because it will be impossible to know where to target and it will further damage the skin (when they do lumpectomy, they know exactly where to target the boost). My RO actually joked saying that the only one that beneficiates is the RO because he will be paid for another week. A friend's RO said mastectomy scars are where most recurrences happen and she will put up with the boosts on her scar. Any comments or thoughts?

  • J-Bug
    J-Bug Member Posts: 626
    edited January 2012

    I was told today that my treatment will be 28 treatments with no boost.

    Twisted steel: I tried to ask today about what you are describing. They told me that all of that is based on the structure of the body. I wanted to know if it had anything to do with tumor size, since mine was in the T3 category like yours and they said that it did not.

  • rjbaby69
    rjbaby69 Member Posts: 349
    edited January 2012

    Hello ladies.  Had my first treatment today and it wasn't as bad as I thought it was going to be.  I had to do a simulation first which took about an hour and then on to the real thing.  That took about 20 minutes.  My radiologists and the other staff are so nice and helpful and they make me feel so good about doing this.  My radiologist told me today that the treatments from now on will actually be about 5 minutes long total.  That means it will take me longer to get there (45 minutes) than the treatment itself will be.  They did some more mapping today and I feel like I am a road map!  LOL!  I didn't or don't have any tattoos.  All of my stuff is drawn with marker on me.  She said that they would touch up the markings as needed since they will see me everyday.  If everything goes as planned, I should be through February 22.  At last, an ending to treatments in sight!  Yeah!

    Hope everyone is doing well.

    HUGS!

  • Kayce234
    Kayce234 Member Posts: 249
    edited January 2012

    j-bug - thanks for the info, how long did your mapping appointment take?  I'm going in at 2pm so I want to plan dinner.

    Sounds like everyone is tolerating the Rads pretty well so far, I hope it stays this way!! 

  • bgail84
    bgail84 Member Posts: 94
    edited January 2012

    I am finishing my rads this week (Dec. rads) but thought I would offer encouragement. My treatment has not been bad. I have been pink like a sunburn, itchy and some pain. My RO did not want me to use anything---dryer the better, but I have used some creams. The best advice I got from my RT was to uncover the area and let a fan blow on the breast for a while. It has helped a lot. DH laughs when he looks at me since I have the fan going and only left breast is exposed--wrapped in throw for rest of body--and markers all over. I also have not worn a bra--baggy shirts and I am a teacher.  The worse for me is the 30 minute drive to the cancer center. So here is hoping that all of you make it through Jan. rads with few issues.

  • marilyn113
    marilyn113 Member Posts: 118
    edited January 2012

    Found out today that I won't be having boosts so I get done next Wednesday, a week earlier than I thought.  Yeah!!  After 18 rads I have no pain, a little bit of itching and I'm still wearing a bra to work.  My breast is quite pink, but it doesn't hurt like a sunburn.

    Kayce234 - I only have 3 tats, one between the breasts and one on each side of my torso.  After I got them I called my son (age 23 with a number of tattoos) and said "Guess what?  I got tattooed." He was pretty shocked until I told him why.  I got a kick out of that!

  • ptdreamers
    ptdreamers Member Posts: 1,080
    edited January 2012
    Ladies I wanted to chime in and offer encouragement. Finished last Wednesday with twenty eight treatments and six boosts.I was always slathering Miaderm and Auquaphor on. Used the Aquaphor on my nipple and incision site. Towards the end I added hydrocortisone cream 1% to relieve some of the itching. Be sure to put Aquapor under your breast where the crease is. That is the only space I routinely missed and that's where it broke down. When I finished the RO said my skin was in great shape. Now it looks like I have a very strange tan. Best of luck to everyone.Smile
  • twistedsteel
    twistedsteel Member Posts: 156
    edited January 2012

    I found out today that the time is based on dosage, not on time. Weird, huh? I guess it takes longer sometimes for the machine that zaps to put out the power needed for my dosage. Whatever... Never was good at physics. Lol

  • hawk
    hawk Member Posts: 305
    edited January 2012

    bgail84 and ptdreamers - thank you for the encouragement!

    Yay Marilyn113 - you are almost done!

    My first RO appointment is Monday. 

  • mags20487
    mags20487 Member Posts: 1,591
    edited January 2012

    Went for the consult to RO that IS covered by my insurance...He seemed to know his stuff too so will go for SIM/Mapping on the 17th and then start rads --35 of em--on the 24th.  So nervous.  My skin burns so easily in the sun so hoping this is different.  Made it thru chemo so this should be better!

    Maggie

  • Patrithia
    Patrithia Member Posts: 19
    edited January 2012

    Hello,

     I began radiation mid-January also.  Yesterday was the beginning of my 4th week (6 weeks in total).  

     Yesterday I began to notice some red on my skin; I'm using Aloe gel (pure) is there anything else that you know of to treat the skin?  I did get a prescription cream from the doctor (will pick it up tomorrow).

     Thank you in advance for answering my questions.

    Best,

    Patrithia 

  • Ralsper
    Ralsper Member Posts: 352
    edited January 2012

    Maggie: We are the same age and similar treatment. Do you know if your RO is planning on radiating the axila area? I am confused because a friend didn't  because those nodes were removed. Do you have TE?

  • msmouse
    msmouse Member Posts: 60
    edited January 2012

    I have my "dry run" tomorrow and offially start on Thursday, Jan 12. They told me to wear an old shirt because they would be using markers on the dry run. Are these markings in addition to the tattoos and they will touch them up every day?  UGH UGH.

  • Kayce234
    Kayce234 Member Posts: 249
    edited January 2012

    Had my mapping today - really not to bad.  Took about an hour and I pretty much just laid on a table with my arms over my head while they adjusted me and rolled me in and out of a CT machine.  I got 4 or 5 tattoos - can't tell if one is just marker - they hurt like heck but it was quick and not a big deal.  I do my simulation on the 18th then start on the 19th.

  • anafoefana
    anafoefana Member Posts: 164
    edited January 2012

    I was supposed to have my first treatment yesterday, but when I got to the hospital they said the RO needed to talk to me.  She was not there so I had to go home and wonder what in the world was happening. They told me to call her today.

     I got a call from the RO today while at work.  She told me she has been feeling really uncomfortable  and felt strongly that she needed to present my case to the multidisciplinary board at the hospital. She said she did that on Friday and that the consesus was that they need to radiate my lymph nodes as well. She said that with the size of my tumor, she really felt that I should have had a complete lymph node dissection (only had sentinel and two) with a lumpectomy.  My breast surgeon was not as sure of the need to radiate the nodes.

    I told her I was okay with it, I know there is risk of lymphedema but hopefully that won't happen.  I am dissapointed, but I trust the drs and I think they are doing what is best for me in the long run.  I surely don't want to increase my chances of going through this again! 

    Ralston are you having the nodes done as well?  I guess if they remove them then you don't need to have it.  The RO said that radiation is very effective on the nodes.  I did not have any positive nodes and although my tumor was 7cmm, it was mostly in situ.  I am not sure... but I made the decision to have the nodes done as well.  Hoping no real bad SEs. 

    I start tomorrow after work.  

  • AnnAlive
    AnnAlive Member Posts: 450
    edited January 2012

    I had a complete lymph node dissection, and because I had a good response to chemo, there were no positive nodes left. I did have a 1.5 cm tumor in a node biopsied at diagnosis, but it cleared (and as far as I know, there isn't a way to know how many other nodes had been affected, after they get cleaned up by chemo). Yet...my RO still plans to radiate the nodes. There seemed to be no question about it being necessary. Because of my stage and grade, I figured they are throwing everything at it. After AND, isn't there still a possibility of cancer cells left around the dissection area(s)?

    I do dread the increased risk of lymphedema, and I'm already doing manual lymphatic drainage exercises at home, taught last week by physical therapist. I start rads on Jan 16. As for burning, my Moisturel and Miaderm creams just arrived, and I already have corisone cream and aloe vera gel. RO didn't specify particular brands and they have to be washed off for actual treatment times.

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