April 2010 Rads Group

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  • sweatyspice
    sweatyspice Member Posts: 922
    edited April 2010

    Just came back from what was supposed to be treatment #1.  No such luck.

    They put me in, took some x rays, then I think they readjusted me and tried again.  Dr. looked at the x ray and said my breast had changed since the simulation, and I wasn't lining up properly.  They had to re-sim me.  

    So I waited for the sim folks to squeeze me in, I got another CAT scan and another tattoo, and now I don't start till next Weds because they need to recalculate the treatment fields!

    I AM SO FRUSTRATED AND PISSED OFF!!!!!!!   They kept saying that it was a good thing it was caught, and a good thing that they're re-doing it rather than shrugging it off and going ahead, and I suppose all that's true, but I'M SO FRUSTRATED!!!!! 

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  • suzieq60
    suzieq60 Member Posts: 6,059
    edited April 2010

    SweatySpice: I am about to leave for my first - hope that doesn't happen to me. Be glad they've fixed the problem, much better then doing it wrong for the whole 30 odd treatments.

    Wish me luck!!!

    Sue

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  • sweatyspice
    sweatyspice Member Posts: 922
    edited April 2010

    Good luck Sue!!!!!!

    Hope you do better than I did today!

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  • KatieMom
    KatieMom Member Posts: 127
    edited April 2010

    I do have teeeny tattoos so I don't really get the whole draw on me thing.  I also have little plastic sticky spots on me that I am not to wash off, although I can take a bath, just no soap on the little thingys.  I will ask Tech Todd tomorrow what all his artwork is for...

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  • feistybluegecko
    feistybluegecko Member Posts: 133
    edited April 2010

    Gosh - talk about action, I had my 8th and last chemo on Sunday and will have my rads consultation this afternoon!  They don't hang around here!

    Philippa

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  • suzieq60
    suzieq60 Member Posts: 6,059
    edited April 2010

    Well, it went ok except I got teary when I got there. I guess it's the fact that I'm starting a new treatment process. With the chemo at least I had steroids to put me in a good mood.

    Info sheet says no creams to the area at least 2 hours before - probably safer to not put anything on in the morning.

    Katie - they did draw little black marks near my tats today. Don't have to worry about washing them off. I guess they do it every time.

    Philippa - they leave at least 3 weeks between chemo and rads here to give your body a chance to recover. I had nearly 4 weeks owing to the Easter holidays.

    Even though it's reasonably close to home, I can see I'm going to get sick of driving out there every day. No treatment this Thursday as they are closed for servicing or something.

    Sue

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  • KatieMom
    KatieMom Member Posts: 127
    edited April 2010

    So I asked Tech Todd about all his Sharpie artwork.  He said that it just makes my visits quicker (as he was redrawing them).  When I said that my hubby and I still had good relations and the hubby was intimidated by the Sharpie marks, he didn't have much to say.  

    Also in the whole lotion before thing.  Tech Todd says definitely NO aloe or any cream before treatment.  Takes 4 hours for the skin to absorb it and it will definitely aid the burning.

    Katie 

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  • sweatyspice
    sweatyspice Member Posts: 922
    edited April 2010

    The handout from my center says the best time to apply cream/lotion/whatever is after the treatment session.

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  • CTMOM1234
    CTMOM1234 Member Posts: 633
    edited April 2010

    Hello April group. I was one of those from the March group who's in the string about not applying anything within 4 hrs. It is VERY good advice! After 20 treatments (and just 5 reg + 5 boosts to go), this is the routine that works well for me, controls the daily red burn and itch, note my treatments are in the afternoon: I bring my lotion (Biafine, provided by my place) into the dressing room and apply a good amount immediately after my treatment and let it soak in a bit before putting on loose cotton shirt. I then apply it at after dinnertime if I'm home and definitely again heavily before bedtime. If I wake up early enough, I do apply the morning of my treatment but NEVER with less than 4.5 hours to spare and always apply it lightly because I definitely want it totally soaked in. I find my underarm, between breasts, nipple, collarbone, and under breast really benefit from this process.

    Once I got into the high teens (like 15 treatments and up), I also put a cool compress on my collarbone area to control the itch as needs be. Might take Dr. up on cortisone if itchiness gets worse, but with only 5 more total breasts to go, am hoping it's just more of the same.

    Asked dr. if I could also use aloe (I like how it feels and how it's natural) and she approved as long as no alcohol listed in contents. Best I found was 98% pure but then when read label, noticed way down in listed alcohol so haven't used. But an aloe plant would definitely be a nice natural option.

    Diagnosis: 11/1/2009, lots of DCIS with micro-invasive 1.7 mm IDC, Stage Ia, 0/3 nodes, ER+/PR+

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  • redsox
    redsox Member Posts: 523
    edited April 2010

    Also agreeing on the, "NO lotion or anything on the breast or treatment area for at least 4 hours before treatment!"  With all the varying advice different doctors give I think that is very consistent.  Some might say a little longer.  My rad onc was a minimalist on type of application -- only OTC hydrocortisone cream.  I did well with tan and pink in the whole breast field that got progressively darker over time but with no skin breaks.  The boost field got red and peeled but was only the surface.  He might have moved on to some other lotion if I had had a worse reaction but generally he thought this worked as well as most other more expensive lotions and was leery of surprise ingredients.  The peak skin reaction was 4 days after the end of treatment and then it started getting better.

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  • LilyLu
    LilyLu Member Posts: 19
    edited April 2010

    Hi, I have been lurking since Feb.  I was dx Feb. 8, had lumpectomy and 2 nodes taken out on Mar. 1. Went back to get clean margins on Mar. 17. Have seen med onc and rad onc. Med onc decided I didn't need chemo and would start me on hormone therapy after radiation. Went today for sim and will start rads on Monday. I have green and purple lines all over my boob, very attractive! I am trying to be postive about this and get thru it. All the information on this board is so helpful.

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  • sweatyspice
    sweatyspice Member Posts: 922
    edited April 2010

    Welcome, LilyLu!

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  • suzieq60
    suzieq60 Member Posts: 6,059
    edited April 2010

    There's no way I'm applying anything to the area before a treatment, even if it's 6 hours. One thing my info sheet says is to only apply a light layer of cream. Also I got a soap free wash bar which they mentioned. I was going to use perfume free soap and didn't realise this other stuff existed. I got 4 bars which I hope will be enough.

    I'm already dreading going out there again today. I'm sure I'll get used to it.

    Sue

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  • KatieMom
    KatieMom Member Posts: 127
    edited April 2010

    Fruit of the Earth Aloe Vera has no alcohol.  Available on line although a friend found it at Rite Aid.  I did not ad bought on line.  Will be applying AFTER treatments and at night.

    Katie 

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  • LilyLu
    LilyLu Member Posts: 19
    edited April 2010

    The information I got from my rad onc says no cream applied within the 2 hours before. She prescribed a steroid cream(triamcinolone) and I am also to use green tea. Brew a cup in the morning and spray (or use cotton ball) 4 times a day. Use the tea , then the cream. I hope this works.

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  • sweatyspice
    sweatyspice Member Posts: 922
    edited April 2010

    They gave me a bottle of Boiron Calendula Lotion.  I wish there was more agreement.

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  • flossy20
    flossy20 Member Posts: 6
    edited April 2010

    I am having the 5 day treatment. Mammosite!!! Had the mammosite put in today and start treatment with Ct scan tomorrow. Let me know how yours is going!!

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  • suzieq60
    suzieq60 Member Posts: 6,059
    edited April 2010

    The fact sheet I got, recommended Fauldings Essentials Vitamin E cream. Thought I'd bought it yesterday and then realised it was barrier cream not vit E. Took it back and got a refund and they didn't have the right one, so now starts the search. There's a pharmacy upstairs form the rad clininc, so I'll try there after the treatment. Getting close to the time to leave. Hope I don't start crying again today.

    Sue

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  • suzieq60
    suzieq60 Member Posts: 6,059
    edited April 2010

    Well, it's done - I didn't cry this time - brave girl. Got the cream at the upstairs pharmacy - last one they had. I'm going to alternate between the aloe vera gel and the Vit E cream. Put the aloe on when I get home and the Vit E cream before bed.

    Had to pay for the planning session - shit - didn't see the second invoice  - total $1500. Over here, radiotherapy is not covered by private health and is only covered by the government Medicare scheme. You can go to a public hospital but I don't trust them. I do get back some from the government. Out of the 1,500 I get 907 back. When I reach an out of the pocket limit, I'll get more back but I think overall the whole radiation thing will cost me about 1300.

    Sue

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  • KatieMom
    KatieMom Member Posts: 127
    edited April 2010

    I have only had 2 zaps but my bad boob is pretty sore, not sunburn kind, but inside like a period kind.  Anyone else have this experience.  I will talk to Tech Todd today, just wondered about my friends here...

    Katie 

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  • Suse64
    Suse64 Member Posts: 14
    edited April 2010

    I am new here, but have been watching in the background...I am also on 3rd zap today, not liking any of it, but it's something I have to do.  My treatment center gave me 100 % ALOE GEL ( fruit of the earth) and I will be seeing a dr. every tuesday to see if I need something more....I haven't had a problem yet, and won't anticipate any, I need to think positive about all of this. 

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  • dsj
    dsj Member Posts: 277
    edited April 2010
    My radiation oncologist said to use "Jean's Cream," which I ordered off the internet.  She also gave me the name of something she said was bettter, but that you can only get in Europe, so I promptly forgot what it was Undecided. 
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  • sweatyspice
    sweatyspice Member Posts: 922
    edited April 2010

    Damn.  I can ask my friend in the UK to send us some!

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  • Tarry1
    Tarry1 Member Posts: 85
    edited April 2010

    Hi eveyone,god luck to everyone who has started rads.  I had my last chemo on March 11 and I start rads on April 12. I wasn't told anything about a simulation, when I got my markings on March 22.  I  have 16 treatments and 5 boosts. I hope that I can get them cheduled early in the morning. I hear that  radiation is not supposed to be so bad.  I hope that's right.  I'd be interested to hear what others have/are experienced with their rads

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  • leisaparis
    leisaparis Member Posts: 587
    edited April 2010

    Hi all, I have surgery tomorrow and will get radiation before the end of the month. 5 days a week for 6 weeks + 1 day. You can find Fruit of the Earth Aloe Vera at Wal-Mart. That's where I buy it. I try to keep it on hand in the summer, I burn, light skin. Good Luck all.

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  • cwbagne79
    cwbagne79 Member Posts: 9
    edited April 2010

    Yes, Fruit of the Earth 100% Aloe Vera is wonderful.  I was given a bottle by the nurse at the facility where I am having my radiation therapy.  Was told not to use it 3 hours before coming in for my treatments, which are twice a day - 7:30AM and 2:30PM.  Just finished #7 of my 10 treatments - all in 1 week.  Partial Breast Irradiation is so easy.  Have had minimal redness and minor pain.  Well worth getting it done faster.  Best of luck all you April Rads gals! 

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  • Kathy044
    Kathy044 Member Posts: 433
    edited April 2010

    Time for me to join with the April radiation group! I had a consultation with the radiation oncologist the end of March before my final chemo session on April 1st.

    I will be having #16 radiation sessions with no need for further boosts as I had clean margins after surgery. Yay, this is faster than I thought it would be (not that they won't extend the radiation over more sessions if SE's are too bad). 


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  • suzieq60
    suzieq60 Member Posts: 6,059
    edited April 2010

    Hi Girls,

    It's interesting to see how many treatments some of you are having. I'm having 30 - not sure about additional boosts. I do know a lady who a public hospital did in 3 weeks by double dosing her - not nice. Told my rad onc about it and she couldn't see why they would do that.

    Maybe it depends on the grade you were. I was grade 3 with clean margins no node involvement. I see Leisa is having 6 weeks too and was grade 3 also.

    Got to go early today, it will be interesting to see what times I get for next week, I did ask for early morning. I wish they would give the whole lot for the 6 weeks, then I could plan around them.

    Sue

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  • LilyLu
    LilyLu Member Posts: 19
    edited April 2010

    I start Monday at 9:30. That will be my regular time. I am suppose to do 33 treatments. Looking forward to getting started, so it will get finished. Also a little nervous about the se. After reading everything, I won't be using any creams before the treatment.

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  • sweatyspice
    sweatyspice Member Posts: 922
    edited April 2010

    I'm grade 3 and getting 25 whole breast treatments.  I would have had a week of boosts too, but I had oncoplastic surgery - they smushed my tissue around and no longer know where the tumor beds were (multicentric disease) - so no boosts.  This freaks me out a bit, so I try to remember I had pretty fat margins. 

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