January 2010 Rads Start

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  • sophie305
    sophie305 Member Posts: 37
    edited January 2010

    Hello to all, I am scheduled for my planning session on Thursday morning.  And it looks as though I may also be a candidate for the prone DS as you've called it!  Depends on how the planning goes I guess but the rad oncologist did suggest this when I met with him last week.  He also mentioned the Canadian fraction but from what the rad technician said when she called to set up the appt, "it all depends" on this planning.  So more details by Thursday or maybe not even until the simulation.  Whatever...I'm getting so much better at this "letting go" thing....in the beginning I made myself crazy trying to get everything understood, organized, planned, scheduled, etc.  Once I let go and let God, I feel so much better.  I can wait.  BUT I'll let you know as soon as I do know!!!  sophie

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  • cookiegal
    cookiegal Member Posts: 3,296
    edited January 2010

    gosh, I was really on the fence about doing the Canadian, and now I kind of wish I had done it. It's just a lot of trips to the hospital!

    Anyway, 3 days off has been good for se's....by this time next week I will be 8 down!

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  • unklezwifeonty
    unklezwifeonty Member Posts: 1,710
    edited January 2010

    Life is full of roads taken and not taken...so not to worry.

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  • DebbieSawyer
    DebbieSawyer Member Posts: 133
    edited January 2010

    Hey girls;  Getting read for rads start tomorrow. The last couple weeks of waiting have seemed like an eternity.

    So in preparation today and tonight:

    Clean house and do laundry---check.

    Grocery shop---check.

    Fuel up truck---check.

    Ride horse and clean stalls---check.

    Shave armpits---check.

    Drink 5oz medicinal red wine for rads burn---check.

    Drink a few more ounces of said wine---check.

    I'm ready.

    For those who have started, is there a certain order in which to apply the lotions? My rads dr is fine with calendula, so I have calendula cream, aloe vera, aquaphor, lubriderm moisturizing lotion. What goes on first, second, third? Or does it matter? Do I apply it as soon as tx is done, or wait until I get home (35 minutes away)? I also heard Remedy by Medline is good; anyone using that? How is everyone doing after a weekend off of tx, how are the SE's?

    OMG, DS for prone position had me ROFL. What is supine position?? Dare I say it...missionary? That was too darned funny.

    I'll update tomorrow, after getting "microwaved"....

    Debbie

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  • DebbieSawyer
    DebbieSawyer Member Posts: 133
    edited January 2010
    btw cookiegal, I read your thread about your breast swelling. Is it better now? Or about the same?
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  • cookiegal
    cookiegal Member Posts: 3,296
    edited January 2010

    thanks for asking, it got a bit better over the holiday.

    Ok, do you know what it looks like when there is a hurricane on the weather radar?

    That is what my breast looks like but in red.

    I have reduction scar around nip (eye of the storm)

    and a swirly pattern of dermatitis.

    They are concerned I am allergic to aquaphor...which I find funny for some reason! Especially since I use it all over my body which is fine.

    So the protocol now is to put on cortizone 1/2 hour before aquaphor.

    IN OTHER NEWS, (camera turn)

    one of my tatoos fell off.....I am serious....the second fell off halfway!

    So today in a panic I drew some little orange arrows toward what is left of it, the tech said that was very smart, and I should do it every day!!!!!!!!

    So for everyone fearing tatoos, I guess they are not always permanent.

    Who knew!!!

    Will ask tomorrow about swelling, rash was so ugly I forgot to ask about swelling. The male tech was like, I can't see anything,and the female tech was like "that's cause she's got a rash!"

    When you get sent to see the nurse it totally feels like detention, they hand you your binder and send your downstairs...so I had the odd experience of walking around the public areas in a hospital gown....not the famous pretty pink breast center ones (if you have read cancer vixen), but the ugly grampa bathrobe ones.

    Oh well 4 down 26 to go.

    Go Pack!

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  • grama5
    grama5 Member Posts: 81
    edited January 2010

    Hi, just got back from what was supposed to be my first rads and now am postponed AGAIN because of my incision. I was supposed to start right afer xmas and was postponed until the 4, now again. I see my surgeon on Wednesday and then go back for rads on the 12th. No gaurentee they will start then unless I am totally healed. My incision was at 6 0clock and am heavy breasted and popped open in the middle of the incision. I can't see the end of rads if I can't get started. Wish me healing in a hurry.

    Flo

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  • unklezwifeonty
    unklezwifeonty Member Posts: 1,710
    edited January 2010

    Dear Flo,

    Sorry to hear of your incision popping. I hope your surgeon is able to fix this asap.



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  • grama5
    grama5 Member Posts: 81
    edited January 2010

    Me too!!!!! Any one else have this problem?

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  • Kim09
    Kim09 Member Posts: 100
    edited January 2010

    Well 1 down, 27 to go. 

    It has been a big day for me since it was also my first day back at work since before Thanksgiving. 

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  • one-L
    one-L Member Posts: 1,110
    edited January 2010

    onty, she didn't give a reason for waiting until rads were over to have the port taken out.  Maybe she doesn't want me to have any more surgery or whatever until after rads.  I don't know what it takes to get the port removed, that is, will I have to be put under again?   I go see the surgeon tomorrow, so maybe I will see what he has to say.

    Flo, I had a lumpectomy and my incision popped open about half way on the 2nd day out.  I had to keep it taped shut after that and the tape just pulled my skin off.  It took it a long time to heal, but it will not leave a bad scar.  At least it doesn't look like it.

    Congrats to everyone getting their daily dose of radiation. I wish I was there with you, but it will be at least another two weeks before I start.  Hope everyone is doing well.

    Juannelle

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  • unklezwifeonty
    unklezwifeonty Member Posts: 1,710
    edited January 2010

    Dear 1L

    Thanks for the update. I don't know if removing the port involved going under again. All my procedures have been done under local with light sedation. Port removal should be possible with that kind of anesthesia.



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  • Sido
    Sido Member Posts: 234
    edited January 2010

    Debbie, I guess you and I are starting on the same day!  My first treatment is tomorrow morning.  I have my corn starch (instead of deoderant) and my sister bought me a special lotion made for radiation by a company called Lindi at our hospital's "breast cancer" shop.  My breast surgeon was there when we were shopping and she looked over the ingredients and said it should help after my tx. I envy you the wine, but being TN, I'm terrified of alcohol.

    Cookie, I'm glad the swelling improved and I hope they can do something about the volitile weather patterns.  How did your tattoos fall off?  Was it because of the rash?

    Flo, I hope everything heals and you can start rads soon!

     I'm also doing rads in the "missionary" position!  LOL! I'll post tomorrow after my session.

    Be well, Sido

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  • dljam
    dljam Member Posts: 3
    edited January 2010

    dljam  New to this start in a couple weeks

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  • catwrangler
    catwrangler Member Posts: 23
    edited January 2010

    Well, today I met with the rads doc, but there wasn't much to discuss.  It was my fifth day of treatment, and things seem to be progressing normally -- no redness or swelling yet, no rash, and I still feel like I have more energy than I did with chemo.  I won't see him again for another week, and hopefully things will be just as smooth then.

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  • unklezwifeonty
    unklezwifeonty Member Posts: 1,710
    edited January 2010

    Sido and DebbieSawyer,

    Good luck for tomorrow gals.

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  • tangi-girl
    tangi-girl Member Posts: 13
    edited January 2010

    Good Morning,

     May I join this group?

    I was diagnosed with LCIS (left breast) and Ductal Invasive Carcinoma (right breast) on Nov. 4, 2009.  I have had bilateral lumpectomies.  I start radiation on Thursday, Jan. 7; 7 weeks/5 days per week.

    I look forward to chatting and sharing with everyone as we move forward!

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  • unklezwifeonty
    unklezwifeonty Member Posts: 1,710
    edited January 2010

    Certainly Tangi. Welcome.

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  • cookiegal
    cookiegal Member Posts: 3,296
    edited January 2010

    Rash seems to be getting better.

    Saw rad onc today,(was supposed to be tomorrow so I was not quite prepared) did not have a great answer to the question "how much swelling is too much swelling?" She said she has never had anyone stop treatment because of edema.

    There is a study from San Antonio about preventing lymphadema during rads with vitamin e and something else that is hard to spell. She didn't seem too excited about it.

    She's all about the canadian fraction which I am not doing, she said well since you are going to be here for a while, I will be leaving for my vacation before you finish, so at some point I will have a new rad onc.

    Not a bad thing I guess.

    5 down 25 to go.

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  • gogo_xago
    gogo_xago Member Posts: 131
    edited January 2010

    cookiegal, do you know the dosage of vitamin E must have, during radiation in order to prevent lympedema?

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  • missmelis1
    missmelis1 Member Posts: 11
    edited January 2010

    Debbie  I like your check list...especially the medicinal red wine! How was your first treatment?

    Cookie I can't believe your tattoo fell off! Mine are tiny and look exactly like a black heads! Kinda hope the one in the middle falls off in about 6 weeks.

    I start my treatments tomorrow morning. Today I went shopping for "no under wire" bras. Hmmm, not sure about them. I'm only a 36 B but I still like under wire support. I also picked up some Tom's deodorant (even though my rad onc doesn't allow it) but I just don't think I can follow the "no deodorant, no shaving" rule.  

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  • Sido
    Sido Member Posts: 234
    edited January 2010

    Well, one down, 32 to go.  Everything went smoothly, I guess.  I was fitted back into my packing material and after much adjusting (and creativity with sharpie markers around my breast), the tx itself took less than 3 minutes.  They said I wouldn't feel anything, so I'm sure the tingling sensation I felt was all in my head, but now I do feel like my breast spent some time in the sun.

    What freaked me out a little was the proximity of the machine.  The dry-run didn't have the machine so close to me, and I kept having flashbacks to the grill of the van that hit me and my DH back in October.  I remember how it just kept coming at me, and the large metal disk of the radiation machine felt a little like that.

    Good luck tomorrow Melissa!  Debbie, how was your session today?

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  • one-L
    one-L Member Posts: 1,110
    edited January 2010

    Good to hear from all  you brave ladies that are forging through this new adventure before some of us.  I am really counting on your experiences to get me through.

    Hope everyone is doing well.

    Juannelle

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  • DebbieSawyer
    DebbieSawyer Member Posts: 133
    edited January 2010

    I am officially ZAPPED. They did yesterday's second simulation with a lot more drawing all over the left boob, underarm, stomach, with markers, mapping out the area to be radiated, and gave me two more tattoos. Five total, but they're really small and barely noticeable. I had to lay perfectly still, arms over head for 30 minutes, while they did their calculations and drawings on me. I've had so many men and women looking at and feeling my boobs, that I could care less about being topless in the radiation room with numerous people in there. Luckily the table is padded and comfortable, and warm blankets are available. They took two xrays to confirm with rads dr that all was aligned correctly, and then they "microwaved" me from two different angles. 20 seconds each angle. The procedure took 45 minutes, but the rest of the fractions should only take a few minutes. Sure hope they're careful about my heart and lungs...  

    Already starting to feel the burning, though. Like when you've been at the beach, and you don't think you're burnt, but when you get home, then you really start to feel that sunburn.   Can't wait to go do it again today.....and the next day....and the next day....and the next day....aargh.

    Thank you for the recommendations of cream, catwrangler and sido. If you use them, let me know how they work.

    For those who have started, what lotions are you using and when? I'm still playing with different combinations of lotions. Hours before treatment yesterday I applied a light moisterizer (approved of course). Last night when the burning started, aloe vera didn't relieve the mild pain, but calendula cream did. I feel like the character in the movie the Karate Kid: Wax on, wax off! 

    Sido--Sorry to hear the reason for your flashbacks. :(  Do you feel more confident now that the first one is over and you know what to expect with the proximity of the machine?

    Onty--Did you finish chemo?

    Cookiegal--Your tattoo fell off? How the heck did that happen? How's the swelling in your breast? And the rash?

    Missmelis1--Your rads dr doesn't want you using Tom's of Maine deodrant? That's one product that's on my approved list of items. I guess it's all at the dr's discretion. How was your first treatment?

    Hello to all, sorry to not address you individually, but I am reading your posts, and interested in hearing where you are in the process.

    Everyone have a great day.

    Debbie

    1 down 15 to go

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  • missmelis1
    missmelis1 Member Posts: 11
    edited January 2010

    Hi girls!

    Sid, glad to hear your first day went well. My first treatment went well, too. The room was actually warm. My two techs were both females. They kept the unaffected breast covered during the session and had music playing softly. 

     Like Debbie, the techs did about 6 more x rays to confirm the correct position and did a little more drawing, too. The actual radiation was very short. Three 30 sec bursts on the inner side and then the machine rotated and did three more 30 sec bursts on the outer side. The hardest part was keeping my arms above head and still. I didn't feel a thing and still don't 8 hours later.

    I asked about the number of boosts. I am to receive 10. Sounds like a lot. I asked my doc about the risk of skin tightening/disfigurement and she said the risk was very small so I'm a bit relieved.

    Debbie-my doc is very old school, although she works at a teaching hospital and is an instructor. The nurse that did my teaching told me what the other docs in her group tell their patients. For example, they can use deodorant as long as they wash it off prior to treatment and the shave with an electric razor.  (big sigh) we'll see how long I put up with wet, hairy pits!  :)

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  • cookiegal
    cookiegal Member Posts: 3,296
    edited January 2010

    hey all....day 6, uneventful.

    They let me put my shoulder down thank goodness. I had really bad bad shoulder pain on the healthy side yesterday, including spasms. I tried to explain it was really hard to stay still with that.

    Stretched and took pill today and that helped. Will try bringing tiny pillow.

    I wish they could re stage me with my good arm up!

    Rash and swelling are better again. Little fatigue today tho.

    have a good evening...6 down 24 to go!

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  • jenn3
    jenn3 Member Posts: 3,316
    edited January 2010

    I finally have my appt to meet with the rad onc and his nurse said that they will do the mapping on the same day.  I will see him for the first time and for the mapping on Tuesday.  My port is scheduled to be removed on the 25th.  The nurse said that shouldn't be a problem, they'll just do the radiation before I go in to have the port removed.  Now I feel like I'm getting something done.  While it feels good to have a break from chemo and doctors, I just want it over with! 

    Question:  Is Aquafor by prescription or do I buy it over the counter?

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  • cookiegal
    cookiegal Member Posts: 3,296
    edited January 2010

    otc....you can get a big tub at costco for 12 bucks, but you may want to buy a small tube as well to take to rads with you. Right now they have a cute little two pack of travel tubes.

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  • grama5
    grama5 Member Posts: 81
    edited January 2010

    Well, I'm back from my appt. w/ surgeon. She put in four stiches and said the painful lump was scar tissue not a blood clot. I go back in a week to get the stitches out and she said I would probably be ok for rads but wait and see, Soooo... I guess I cancel the appt. I have as it is the same day as getting my stitches out. Now I will be looking at the last half of Jan.

    Flo

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  • momand2kids
    momand2kids Member Posts: 1,508
    edited January 2010

    Dear all,

    just checking in to encourage you-- I finished rads in May--- and it was very doable.... I found a couple of things really helpful.  I exercised each morning before the appointment (elliptical trainer 20-30 minutes).... right after the appt I put aloe lotion on my breast and at night I put aquaphor on my breast (it is messy but effective )  washed it all of in the am before I went. I had an am appointment then went right to work----

    I found myself much more tired in the 5th and 6th week and usually came right home after work and did not do anything else.... it becomes part of your daily routine very quickly and it will be over before you know it...

    best of luck to all 

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