July 2009 rads group

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  • Susantc
    Susantc Member Posts: 33
    edited July 2009

    Hello Everyone,

    I have been reading lots of posts and decided to join as well. I will be having my simulation appointment tomorrow and start thirty treatments of radiation for DCIS on the 6th. I'm hoping for the best in terms of side effects. It's nice to say "I had cancer". Good luck to all of you. I look forward to keeping in touch and staying healthy!

    DCIS, Dx May 22, 7mm, 0/0nodes, ER+/PR+

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  • living4today
    living4today Member Posts: 215
    edited July 2009

    Eileen....LOL, you made my day. 

    I had my sim today, only to find out my expanders are too full, so tomorrow my girls are shrinking...than I go back in a few weeks to have the sim all over again and set up rad appts.  (I can't start Rads until after my PET on the 16th). 

    Hoping we all sail through this rad stuff and can get on with our living!

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  • Artemis
    Artemis Member Posts: 759
    edited July 2009
    jdeking ~ I have semi-permanent markers.  I told my sister that my chest looks like I lost a fight with a Sharpie-holding toddler, haha!  I'm so glad to not have tattoos; I was completely prepared to resist them if my team wanted to use them.

    Eileen ~ Oh my gosh, I hadn't heard of the unzipped pants side effect!  Thanks for warning us!
    Tongue outWink

    Today was tx #2, and I was again on the table for an hour.  They kept promising me if won't be like this tomorrow, but that's what they said yesterday.  Oh well.  It didn't hurt or anything, so I just lay there praying and practicing deep breathing.  I found it sort of relaxing if that makes any sense.

    Welcome, new members!

    Hugs to all,
    Artemis
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  • goldenlover
    goldenlover Member Posts: 6
    edited July 2009

    I had my third treatment today. So far I haven't noticed any major side effects other than a slightly foggy, disoriented feeling a couple of hours after. The treatments only take a few minutes except for the days that they have to take quality assurance xrays.

    When they did my planning I received four tattoos. When I told the nurse that I have super sensitive skin and sunburn very easily she suggested that I start using aloe right away and then use aquaphor when I start to turn red (isn't that optomistic). She said I could continue to swim but when my skin gets red I won't want to because the chlorine will sting. My husband commented that I could continue to use our pool as the only thiing that gets wet is my butt and my heels when I am lounging in my floating recliner.

    When I met with my radiation doctor on Tuesday he said that my CAT scan looked good. Then he mentioned that there was some excess fluid around my heart. That isn't his area of expertise so I should talk to my regular doctor about that. Has anyone else had fluid around their heart? That off handed comment kind of freaked me out. Just one more thing I will have to check in to.

    Hoping that everone's treatments go quickly and well.

     Vicki

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  • nanabolini
    nanabolini Member Posts: 61
    edited July 2009

     Had my first treatment yesterday, was extremely nervous going in, petrified is more accurate, but it was ok after all.  I was relieved after just to think 'yes I can do this.' 

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  • jdeking
    jdeking Member Posts: 408
    edited July 2009

    Eileen - laughing my butt off at your unzipped pants SE! Too funny.

    Artemis - I also ended up with dueling blue and red sharpie all over; blue from the doc and red from the 2 techs. This is kind of a fun look! I was glad not to have tattoos also, though they would have probably blended in with my kazillion freckles.

    Vicki - that is my kind of swimming! Floating in a pool sounds heavenly right about now (we had 12 days over 100 degrees in June and at least 3 more months of that to go!)

    The sim was really easy, I was out of there in less than 20 min. They said my first actual zap will be longer as they have to position and take films, so we'll see how that goes. It got pushed back to Tues as they are booked on Monday.

    Everyone welcome, have a great weekend, and here's to getting through this part of our journeys!

    Janine

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  • carollynn79
    carollynn79 Member Posts: 654
    edited July 2009

    Hello all hope everyone has a fun relaxing holiday weekend.  My Sim was also short being 30 minutes in and out.  I did get the tats very tiny ink marks, still do not have all the sharpie marks off, but they will fade!  Had a CAT scan too but do not know any results, should hear more July 9 when I start treatment.  Is anyone else taking Tamox during Rads?

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  • hrf
    hrf Member Posts: 3,225
    edited July 2009

    Carollynn79 ... I have to check with the radiation onc about starting the Tamox during rads. I'll find out next week.

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  • ciarrai
    ciarrai Member Posts: 1
    edited July 2009

    Hello from Dublin, Ireland.

    I started rads on June 29th (the day before my birthday) and I am due to have 25 sessions. I would love to join this group and connect with all you lovely people in the USA. I plan to go to a relaxation group this evening to help me relax as I am having difficulty sleeping and I feel anxious everytime I hop onto that table for the rads. I am trying to continue working and will see how I get on. best of luck everyone and.....at least I have no fear of sunburn here in Ireland.....part of the roof of the hospital collasped last night from heavy rain and thuinderstorms! (thankfully it did not affect the radiography dept). 

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  • NanaA
    NanaA Member Posts: 293
    edited July 2009

    Went in today for simulation,  I was OK but It could have been alot better if they had communicated more.  They told me before they went out the they would be in and out during the process.  When they did come in they did not say one word to me.  It seems like they could have asked if I was doing OK.  And they when the came in at the end he just started marking on me with a sharpie without saying a thing.  I thought he at least should have said , you are going to feel us putting some marks on with a marker to identify where we will put the tattoos.  Other wise it was just over 30 minutes and I was out of there.  Onc came in at the end and said everything looked great.  I am not starting until July 27.  We are on vacation from 17th to 26th.  I will have 37.  I will finish Sept 16. Annette 

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  • Artemis
    Artemis Member Posts: 759
    edited July 2009

    Zap number 3 today; over an hour on the table again.  I surely do hope it's not going to be like this every. single. time.  I'm wondering if I should go to another clinic.  I'll think about it over the weekend, then see what Monday brings.

    Hugs to all,
    Artemis

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  • carollynn79
    carollynn79 Member Posts: 654
    edited July 2009

    I am feeling really fortunate, they were great during my Sim explaining while they marked away, answering my questions.  I am told I will see the onc every Monday and the nurse assigned to me every Thursday.  My nurse and doctor talked to me before the Sim and the nurse sent me a card at home with her contact info telling me to call or request a meeting anytime I am there.  Will see how it goes but so far no compalints!  Good luck to Artemis and NanaA hope it gets better.

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  • gymmom8
    gymmom8 Member Posts: 86
    edited July 2009

    I had a CT scan on Tuesday and was given temporary marks with sharpies.  They said to not let them wash off and covered them with tape to keep them in place.  I mentioned that I was going on vacation and would be swimming so they have me scheduled for my "tattoos" on the 10th, just before I go away.  I am taking my kids to visit my sister in Texas for our only vacation of the summer.  The doctor and nurse were so nice about it.  They want me to enjoy myself before radiation begins on the 20th. 

    They gave me sample packets of Xclair Cream to use 3xday once radiation begins.  They said they would give me a tube of the cream when the samples are gone.  I asked about aquaphor and they said that could be used as well. 

    NanaA - They should have communicated with you more.  I am a talker though and I'm always asking, what are you doing or what is that for?  I never used to be like that but since the diagnosis, I ask questions over and over.   When I first got there for my scan, a nurse sat down with me to discuss the procedure and to answer any questions I had.  They also spoke to me during the scan and let me know everything they were doing and how much longer things would take.  I didn't have to ask much this time. Enjoy your vacation with the kids and grandkids!!

    Living4today - sorry to hear you are too "full" and have to downsize.  My PS filled me up pretty good but I was not told they were too full.  I hope it does not delay you too much.

    Vicki - I am sorry to hear of your excess fluid.  There seems to always be something else, doesn't there?  I hope it turns out to be nothing. Best of luck!!

    Artemis - did they give you any idea as to why the treatment was taking so long? 

    Have a great 4th of July weekend everyone!!

    Cyndi

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  • living4today
    living4today Member Posts: 215
    edited July 2009

    Hi everyone,

    Just a quick update, my girls were deflated a bit yesterday...wasn't that painful at all.  Thank goodness!  Actually my chest is a bit softer...wonder if that is what it is going to feel like when I get my new girls next spring!  I have to have a repeast Sim on the 15th, PET CT on the 16th and if that is clear, should be starting rads on the 20th.  I am one week out from chemo and am thankful to have just a bit of energy to get some things done before the fatigue of rads gets me...I did hear exercising through rads makes a difference on the fatigue?  I am curious...I just hate being so tired and feeling so crappy.  Hope everyone has a great 4th!

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  • gymmom8
    gymmom8 Member Posts: 86
    edited July 2009

    Living4today - The 20th is a good day to start rads.  That is my day too.  I have heard that exercising is good to do so I plan on going back in the pool and start swimming again.  The compression of the water will help my arm as well.  I am worried about lymphedema.  I just have to wait until I get my tattoo's on the 10th.  I currently have markers that will wash off in the pool.  I hope the swimming will also help me lose the pounds I have put on during chemo. 

    I am also curious about the fatigue of rads.  I hear it is cumulative and will get worse as it progresses.  Anyone with thoughts/knowledge of that?

    Cyndi

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  • NanaA
    NanaA Member Posts: 293
    edited July 2009

    Living4today I had a friend who went thru rads while I was in my surgery stage.  She had no problems at all with 33 treatments.  She did say she was more tired at the end, but she continued to work the whole time and only took 1 day off.  Sounds like we should make it thru just fine.  I am looking forward to being done with this whole process.  I realize I will still have to have checkups but I celebrated when I only had herceptin next week and the bone density test the week after.  Who would have thought that only 1 trip to Dr a week would be something to celebrate .  Annette

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  • FeyLynn
    FeyLynn Member Posts: 19
    edited July 2009

    Hi All,

    I had my simulation on June 23 and start rads on July 6 - OMG can't believe it's here already.  I'll be having the 3 week (+3 boosters) intensive treatment.  Is it sick that I'm looking forward to it?  Maybe it's because this journey is nearly over.

    Hope all goes well - hoping to share everyones experiences and suggestions.

    Peace - Lynn

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  • Leah_S
    Leah_S Member Posts: 8,458
    edited July 2009

    I'll be starting Wednesday. Most of the time I try to put it out of my mind. I am so stressed by the thought of it that that's the only way I can cope before I start.

    I went to spend a couple of days with my dauyghter, and my granddaughter did a terrific job of keeping me entertained. Grandchildren are the best.

    Leah

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  • Artemis
    Artemis Member Posts: 759
    edited July 2009
    Cyndi ~ They just can't seem to get all points lined up at once.  They are as baffled as I am which is pretty dang baffled because two family members and one friend have been at the same place with no problems.  Maybe somehow *I* am the problem.  I really don't know.

    Artemis
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  • gymmom8
    gymmom8 Member Posts: 86
    edited July 2009

    Artemis - I'll keep my fingers crossed (and toes too) that next time is better.  I guess it's better that they take the time and get it right but...I don't think I could handle that long each treatment. 

    Cyndi

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  • Rabbit_fan
    Rabbit_fan Member Posts: 166
    edited July 2009

    Hi Lynn,  I was looking forward to it too - I wanted to just get moving and get it done.  I was delayed by over 3 weeks by medical oncology and waiting for my Oncotype, so when they called to book my first treatment I was excited! 

    Hoping it's a breeze for all of us!

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  • kmn0701
    kmn0701 Member Posts: 117
    edited July 2009

    Hi ladies, I'm going to be joining this group. I had my sim on Wednesday & am starting 30 treatments next week. I want to know why some get permanent tattoos & some don't. I "had" to get permanent ones....or so I was told. I mean, they're not big or anything but I really would rather not have them be permanent. I guess as long as it does it's job I won't complain (much anyway).

    Nice to see a couple familiar faces....Artemis & living4today. Smile Hope they get it right for you next week Artemis!

    My Rad Onc gave me some Miaderm cream to use. I have really fair, sensitive skin. I am quite concerned about burning. Please chime in with what's working best for you all. I'd like to be prepared!

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  • Artemis
    Artemis Member Posts: 759
    edited July 2009
    Cyndi ~ Thanks for the good thoughts!

    Hi, Kristine!  Welcome!  I was in the June group with webbie and KerryMac, but my start date got pushed back so I'm in this group now.  The gel I'm using is called Carrysyn or Caryssyn...something like that.  It goes on really well, is non-oily, and dried really quickly.  Good luck to you!

    Hugs to all,
    Artemis
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  • Bethie1
    Bethie1 Member Posts: 393
    edited July 2009

    I'd like to join also.  Technically, I started rads in June, but won't finish rads until 8/4 due to complications from walking pneumonia I got during rads.!!!

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  • peigid
    peigid Member Posts: 3
    edited July 2009

    I was diagnosed recently with DCIS after lumpectomy and had my sim appt on 6/25.  I've been told they will probably call me 7/6 about when I'll start my radiation treatments.  I'm pretty freaked out about the entire process.  The sim took 90 minutes with the tech being very frustrated - so I think she was having a bad day.

    The strange thing to me is that they took digital photographs of me and then of my breasts at the end of the sim appt.  My friend also had radiation treatments for breast cancer at the same place and she said they photographed her every time.  Is this typical?  It makes no sense to me.  Does anyone know why they would need photographs?

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  • kellyless
    kellyless Member Posts: 68
    edited July 2009

    I'm in.  I had mapping and tattoo's on Thursday, whole thing took a very fast 30 minutes.  The tattoo's did not hurt, and they are NBD in my opinion, I have 7 dots. My doc used green and purple sharpies to map it out, it looked like my chest was celebrating Mardi Gras.  We go on vaca next week to the beach, start the day after i get back, 7/13 - 33 treatments, 5 boosts at the end.  Boosts are a more focused radiation at a slightly higher dose at your surgical site, since that's the most likely danger area.  I'm told you can't tell the diff between regular and boosts physically. 

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  • kellyless
    kellyless Member Posts: 68
    edited July 2009

    Hey living for today - sounds like we had about the same thing! I was IDC, 2.2cm, Stage IIb, Grade 3, 1/24 nodes, ER-/PR-, HER2-

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  • DUTCHinAtlanta
    DUTCHinAtlanta Member Posts: 58
    edited July 2009

    Hi Ladies.  I'm going to join this group for my wife who does not do computers or the Internet.  She had her 4th and last chemo infusion last week, and is scheduled for her CT scan on the 17th.  The radiation onc said she will have 35 treatments over 6.5 weeks.  I/we look forward to learning and sharing with you all.

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  • LoriL
    LoriL Member Posts: 185
    edited July 2009

    Hi Ladies!

    I had my first treatment today and must say that it feels GREAT to get going with this! It just all feels like another step in the right direction- not scarey at all. I visualized the beams as being "healing beams" to get every little drasted cancer cell that may have been left behind. Woohoo- so long, fairwell!

    I'm fairly fair skinned, but tan pretty easily. I decided to put aloe gel on after treatments starting today rather than waiting until my skin looks irritated (like they recommended). Good luck, everyone!

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  • Leah_S
    Leah_S Member Posts: 8,458
    edited July 2009

    LorilL, thanks for the idea of the visualization. I start Wednesday, and I need ideas!

    I'm also going to use the aloe vera from day 1 since I have very sensitive skin.

    Leah (who is going nuts)

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