Winter rads 2014-2015

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  • Beachbum1023
    Beachbum1023 Member Posts: 1,417
    edited February 2015

    ThinkingPositive, thanks, had the MO been a little more patient and understanding, I would have pushed for another way but she had ONE plan. And it failed miserably. I was supposed to have immediate reconstruction but the PS had to rearrange the skin around because the incision was a mess, so that failed too. They want it to heal first and then I'll see what to do. Perhaps flat is where its at! I'm just not too sure I want the hassle and aggravation of all that at my age. And since my heart EF is below 50% that is a bit scary as well. This whole disease stinks, I feel like I am going to be using duck tape to piece myself together by the end..............

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  • Annie88
    Annie88 Member Posts: 196
    edited February 2015

    Good evening everyone! 26 down and 2 to go!

    How long have you waited to start the Tamoxifen, those of you taking it? I am not ready, but it is part of ensuring this BC is out of the picture.

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  • quiggy
    quiggy Member Posts: 315
    edited February 2015

    Hey Beachbum1023.... I'm with ya. I don't need duct tape but I totally have "frankenboob" covered! I wonder if we'll ever feel ok about our bodies ever again.

    I'm sad we have all endured this disease, sad for our suffering and pain and for our losses. I'm sad that some of us will suffer SEs forever.

    BUT, I am beyond happy that we're here to share, here for our families and that we are alive. Every time one of us finishes treatment, it's another victory!

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  • quiggy
    quiggy Member Posts: 315
    edited February 2015

    Annie88, good question!

    It's the next step for many of us. I'm not sure it it will be Tamoxifen or Exemestane (Aromasin)for me. Or, what if I do nothing?

    What are others doing? How soon?


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  • Nomatterwhat
    Nomatterwhat Member Posts: 587
    edited February 2015

    CONGRATS  to you Bippy!!!  I am so happy for you.

    Thinkpositive, I had a BMX in August 2014 and had 28/5 treatments of rads. 

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  • ladyb1234
    ladyb1234 Member Posts: 1,426
    edited February 2015

    Bippy, you go girl! I thought I heard a lot of celebrating today! We knew you would make it!

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  • CoyoteNV
    CoyoteNV Member Posts: 575
    edited February 2015

    Quiggy, good answers for Mary. I'd like to add one more question.  How much skin damage from radiation does your office see?  I think this is a pertinent question because my clinic had not seen a severe "burn" in over a year and a half. My experience continued that record.

    ThinkingPositive ~ In 2014, had a recurrent tumor in my unradiated nymph nodes. In 2012, with my first bc experience, I had a BMX and chemo.  Radiation was not recommended by the cancer board. The RO told me that he felt radiation would have been appropriate because 1) my cancer was Triple Negative and 2) Although it was small, it was a Grade 3 (aggressive), 3) It was in a sentinel node.  To him those 3 items were indicators that yes to radiation was the correct answer.  Hindsight says it was.   I remember feeling so relieved when the MO said no radiation was required that I didn't ask if anyone recommended it.  Maybe that would be a good question for you to ask. 

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  • Beachbum1023
    Beachbum1023 Member Posts: 1,417
    edited February 2015

    Bippy, Congrats! I hope you are going to party like a rock star!

    Annie, put those cancer killing butt kicking boots on and keep stompin' 2 more!

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  • SunnySydeUp
    SunnySydeUp Member Posts: 21
    edited February 2015

    Congrats lescover and Bippy, so happy for you!

    Dotwithkitties and Farmerma, we're kicking off the next group! I start this Wednesday the 25th (entered my date wrong initially - must have been the anxiety to get started!). Got my "rad bag" packed with assorted creams and soft cotton undergarments ready to go! (Gotta love Amazon Prime!) Bring it on

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  • zjrosenthal
    zjrosenthal Member Posts: 2,026
    edited February 2015

    I just finished chemo 4 weeks ago and ALND surgery on Thursday. I have my post surgical appointment on March 3 and see the RO on March 5. I don't know if this puts me in the winter rads group. Haven't seen one yet for spring rads. Love, Jean

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  • Beachbum1023
    Beachbum1023 Member Posts: 1,417
    edited February 2015

    Hi zjrosenthal, I am doing rads now, finished #20. How are you doing after surgery? The armpit is pretty tender, I hope you are feeling ok.

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  • farmerma
    farmerma Member Posts: 83
    edited February 2015

    Dotwithkitties - How was your first day? Today was my first treatment along with "pictures". Not sure exactly what that means, but I guess they do them once a week to make sure the tattoos are still aligning things properly (tech explained that people gain/lose weight and they have to make sure beams are being directed at the right spot). It was only after I was all done that he told me when I heard the buzzing noise is when they were actually doing the treatment. Other time in between was for pictures I guess. Even with this "longer" appointment, I was out of there in about 20 minutes! In fact, I got there early and they were just waiting for me. So, lesson learned, I'll get there early every day and maybe get right in (and out)! I'll see the RO every Friday after my treatment.

    Not sure if I'm just getting paranoid, but my radiated side looks a little pinker already. Is that normal? Anybody else notice this right away? I'll definitely ask about it tomorrow if it still looks pink.

    I'm so happy that my techs are all so nice. They do everything possible to make me comfortable, keep me covered when they can, and tell me everything that they are doing and explain what is going to happen. The lead even went and sat with my husband in the waiting area after my treatment and talked to him while I was changing. Hubby was there to take a picture to mark 1 down/32 to go!

    Allmodestyisgone - Good luck tomorrow!

    SunnySydeUp - Will be sending positive vibes to you on Wednesday!

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  • magdalene51
    magdalene51 Member Posts: 2,214
    edited February 2015

    Welcome, Jean! Always good to see a familiar face!

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  • zjrosenthal
    zjrosenthal Member Posts: 2,026
    edited February 2015

    Hi Mags. Nice to see you too.

    Beachbum, My surgery went well. A few drain issues, with clots but minimal discomfort. No real and I had full range of motion almost immediately. God is good. Love, Jean

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  • CAS4
    CAS4 Member Posts: 54
    edited February 2015

    Annie88- I'm on my 7th week of Tamoxifen and have no major complaints at all- I did start Effexor at the same time. There is a group on here Tamoxifen 2015 you might want to join.way to go you are almost done!!!! I received so much love and support from this group- all angels, truly!!!

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  • Mary59G
    Mary59G Member Posts: 139
    edited February 2015

    Thinkingpositive....Yes I had a mastectomy with 1 lymph node involvement, I signed up for a study they were doing and in turn they conducted the Oncotype DX test. When the test came back I had a score of 9 which is low......within the study the next step was to let the computer pick chemo or no chemo. And of course it picked chemo for me. But after doing a whole lot of research if I did chemo it would raise my recurrance a little so I decided to opt out of the study and NO CHEMO....now they are sending me to the radiologist in the morning, as you are I am very nervous about it and will get a second opinion next week I already have an appointment. Have you had the Oncotype DX test? That pretty much was a heads up for me and I will probbly duck out of radiation if it is possible (figures and all are crossed). I feel like a very big chicken and admire everyone that is going thru it, but I just do not see the need for that at this point and like I said am hoping I go tomorrow and they tell me the same thing.

    Good luck with whatever decision you make, for me I have had about enough of feeling like a guinia pig at this point. I just lost my husband 3 weeks before my diagnosis and I don't want to feel like they have all the answers as if they did there would be a cure by now. I'm sorry to rant, but my husband passed after having a stint put in and the nurse let him sit up and he immediately passed with me sitting there. Needless to say I have some real issues with all this too.

    Mary

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  • Sjacobs146
    Sjacobs146 Member Posts: 770
    edited February 2015

    I had a CT scan yesterday so that my RO can start planning for the boosts. Woo hoo,that means that the end is near. No major skin issues yet, except my armpit is a little red.

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  • Bippy625
    Bippy625 Member Posts: 890
    edited February 2015

    i had a bmx, and rads 4 weeks after. We waited a week extra so as to allow healing. I was told that I had to do rads, so no choice. I am sure it is very hard to choose, if in the grey area.

    I cannot believe that I am done with rads!!!!!!!!


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  • zjrosenthal
    zjrosenthal Member Posts: 2,026
    edited February 2015

    Woohoo Bippy. Congradulations. It must feel great to be done with rads. That sure seems to have gone fast. Love, Jean

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  • Professor50
    Professor50 Member Posts: 220
    edited February 2015

    To those asking about when to start tamoxifen, I actually started it prior to starting rads. My MO basically said, "Pick up the prescription and get started!" and I said, "Wait. What? You mean BEFORE I even have radiation? and then DURING radiation?" And she just looked at me and said, "Why would we wait?" Okay, I guess. I started tamoxifen in mid-December and did rads throughout January. It was no big. The only thing I didn't like is not knowing what was what. What I mean is, if I was tired or whatever, I didn't know if it was the tamoxifen or the radiation. Now that I am 11 days out from radiation I think my energy level was affected by the rads but my sleeping has actually improved with tamoxifen. I have no idea why that is but I am sleeping A LOT better.

    Everyone: I wish you good outcomes! I hope the treatments fly and you are on the other side of this step in no time at all.

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  • MagicalBean
    MagicalBean Member Posts: 362
    edited February 2015

    Annie-I started Tamoxifen a month after rads to avoid any SE crossover

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  • Allmodestyisgone
    Allmodestyisgone Member Posts: 18
    edited February 2015

    Farmerma - thanks for the good wishes

    Go today at 3 pm for first treatment. Looking forward to getting this phase started. Said goodbye to my deodorant.

    I am within walking distance of the hospital (2 km) but it is so cold I will have to drive for at least the first week anyway.

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  • farmerma
    farmerma Member Posts: 83
    edited February 2015

    My MO wants me to wait to start Tamoxifen until after I finish rads. I asked if it was to keep SEs separated, but she said it was because the Tamoxifen can have drying/thinning affect on the skin, so you wouldn't want that happening while your skin is being radiated. Made a lot of sense to me. I have the prescription and will start it when I finish up in April.

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  • zjrosenthal
    zjrosenthal Member Posts: 2,026
    edited February 2015

    I have been on Femara since before my surgery. I won't start rads for a few weeks. Does anyone know the protocol for how soon rads need to be started after chemo? We had to put in a surgery first on 2/19, so it seems a long time to wait before rads. I finished chemo on Jan. 20. Love, Jean

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  • Professor50
    Professor50 Member Posts: 220
    edited February 2015

    Ha! I guess my MO just didn't care about my skin! :) On the other hand, once I got started, I suppose we might have noticed if the tamoxifen was affecting my skin (it hasn't yet) then I could have stopped it for the radiation. So far so good on my end....

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  • Beachbum1023
    Beachbum1023 Member Posts: 1,417
    edited February 2015

    Hi Jean, I finished chemo/Taxol, and 19 days later I went for my mastectomy. I started rads on 1/22. They wanted me to heal a bit before rads, and they were too busy to schedule any sooner at rads. Sad they can't get enough people scheduled because there are more people for rads than they have time for.....:(

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  • zjrosenthal
    zjrosenthal Member Posts: 2,026
    edited February 2015

    I just hope they aren't putting my life at risk by waiting too long! Love, Jean

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  • CassieCat
    CassieCat Member Posts: 1,257
    edited February 2015

    Jean, I finished chemo on 12/15, had my MX on 1/9 and started rads on 2/12. They didn't seem concerned at waiting that long, and in fact wanted at least 4 weeks to heal after surgery.

    I'll be starting Tamoxifen, but MO said it would be after rads, so sometime in early April I guess.

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  • Professor50
    Professor50 Member Posts: 220
    edited February 2015

    My RO told me that he generally likes to have between 4 and 6 weeks between surgery and rads for healing. It didn't seem like he was in a huge hurry.


    I love to hear all of you women saying things about ending/starting stuff in APRIL. Will it REALLY be Spring someday? Oh, I hope so. April cannot come soon enough for me!

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  • zjrosenthal
    zjrosenthal Member Posts: 2,026
    edited February 2015

    Ok thanks ladies. You relieved my anxiety about waiting so long between chemo and rads. I guess they know what they're doing. Love, Jean

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