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Starting Radiation Sept. 2019

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  • smackan
    smackan Member Posts: 34
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    Glad everyone seems to be doing well so far! DogMomRunner- looks like we are on the same schedule. I have my simulation on Friday and start rads on Monday. Is anyone who has to do the breath holding doing the prone position? My RO hasn't said a word about breath holding and I am a left-sider as well. I am assuming it's because I am doing it in the prone position. I guess I will find out Friday.

    I only have to do 16 radssince I had IORT so I still may finish the same time as most of you. Then I will deal with this pesky hematoma. I have been massaging like my surgeon said but it's not helping at all and is now the size of a small banana. Plastic surgeon said surgery may be my only option. I am not sure I could wear a regular bra with this (still wearing sports bras since surgery) as the band would lay right on the hematoma. I hope rads are easy than all these surgical issues.

  • UpstateNYer
    UpstateNYer Member Posts: 331
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    Hello everyone,

    Glad Smackan and DogMomRunner will be starting soon. Your treatments will be over before you know it. Love your posts, Pink Armor, (love your nickname), keep 'em coming. I got #6 of 16 today. RO told me to ice my breast and to lie on my back to reduce swelling. I don't notice swelling, however. I am a bit upset as RO reminded me that my 2 tumors, although small, were very aggressive (onco score of 48!!) She addressed the fact that rads are only to prevent local recurrence. Not sure if she was subtly trying to tell me that I am at greater risk of distant recurrence even though I took chemo.That is why I took chemo, of course. I guess that it will haunt me in the years to come. I am trying to remain positive, however. There are so many people who have it far worse than me. Thanks for listening.

  • GiddyupGirl
    GiddyupGirl Member Posts: 196
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    Upstate - don't worry about what your RO said - actually rads does reduce local recurrence but research is showing that it also has an indirect effect systemically. It seems when we kill the little local monsters some of the rogues die as well. (I got this from a study at the National Cancer Institute). You also had clear nodes so I think you have every reason to be positive.

    Pink Armour don't be too concerned about your nipple my went really dark and I am five weeks out and it is almost normal colour now. (it did peel though which was kinda weird but they say normal)

    Yrdorian - I am glad to see you are doing so well.

    For those of you with a long drive keep a snack in the car. My was a banana and it really did help.

    Good Luck to all it will be finished before you know it and then you will be surprised at how much extra time you seem to have.

  • laurencl
    laurencl Member Posts: 203
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    Well, I now have “mapping: the reboot “. My RO wanted my expander deflated a bit, so I have another mapping appointment next week...ugh!

    After reading all your comments, I’m worried about working. I just got back to work (after chemo and surgery). I was so happy to feel sort of like myself (exceptwith less hair, less weight and one breast) and the idea of being exhausted again is not appealing...double ugh. I just want this all done.

  • UpstateNYer
    UpstateNYer Member Posts: 331
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    Giddyupgirl-Thanks for your kind comments. You made me feel so much better. Gosh, I love this thread.

    Laurencl-I just had #6 of 16 and am not noticing any real fatigue, although I don't work outside the home. With chemo, like you, I had extreme fatigue. Rads are much easier, I think you'll agree. The hardest part for me is the drive to and from. Good luck to you. 👍

  • laurencl
    laurencl Member Posts: 203
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    UpstateNYer Thank you! Good to know! I know it’s all a process...but I have my moments.

  • GiddyupGirl
    GiddyupGirl Member Posts: 196
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    Laurenci - I had fatigue from the beginning but it was mostly solved with an hour downtime and the weekends were awesome for restoring energy. I kept working and just carved a little time out for a break and a nap when I got home. Eat protein it helps and honestly a little sugar here and there was very helpful. Good luck

  • polkadot1
    polkadot1 Member Posts: 46
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    Good morning everyone! I wanted to share something from my treatment appointment yesterday. I was sitting in the waiting room and noticed the "bell" that people ring when they're done with treatment. For some reason I hadn't noticed it before. Well just then a man walked out and his two technicians were with him and they made a video of this man ringing the bell. He was so excited! He put his fists in the air and smiled. They all hugged, the two women at the front desk also hugged him and everyone cheered. You could just see pure joy in this man's eyes. It was really awesome to watch and made me tear up when you see a grown middle aged man almost cry. So I can't wait until we all get to "ring the bell" and be done with this part of our journey.

    Hugs to you all!


  • PinkArmor
    PinkArmor Member Posts: 51
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    Lucky #13 today. Well Ladies, it's started. I started having skin issues yesterday. Right at the top of my breast where it meets the shoulder/underarm has gone real pink and the skin is so super sensitive. Some pain and itch. The incision scars are super sore and itchy. Have started putting the gel on super thick more times a day and it really helped. Nurses said I was right on schedule - lol! - probably down hill from here. But that's ok I am almost done.The light at the end of the tunnel is in sight. They had a suggestion for if you must wear a bra. I work so I don't have a choice - my boss said coming to work naked was not an option. I told her I didn't see why not - everyone else has seen my boobs! They suggested putting on like a bottom half of an old soft T-shirt around your chest and then put the bra on over it. Works pretty good. Think I will go to the fabric store and get some soft T-shirt cotton and cut some strips for this purpose.

    Thought for today- . Never be ashamed of a scar. It simply means you were stronger than whatever tried to hurt you.

    Tomorrow is Friday and after that we get a 2 day break- YAY!

    Have a good day today everyone!


  • PinkArmor
    PinkArmor Member Posts: 51
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    Polkadot1- We have a bell at my clinic also. My first day of rads there was a woman just finishing her txs. She had a special shirt made celebrating her victory and put it on to ring the bell. It was awesome. I can't wait either! I'll probably do a happy dance.

  • Xxxxxxxxxxxxxxx
    Xxxxxxxxxxxxxxx Member Posts: 551
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    14/33 done. My skin is fine ( I am very white so I was very worried about my skin, but so far it is behaving like a good girl, I hope it continues like this).

    Polkadot1, I can understand the emotion of that man ...

    There is no bell in my center and I personally prefer it that way, I do not want any celebration in front of other patients who may be in more delicate situations. But I will raise my glass when we are all done, for a great virtual toast of the september rads sisters! ❤

  • dogmomrunner
    dogmomrunner Member Posts: 492
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    Hi Smackan - I’m glad that you are getting started. I will be laying on my back and holding my breath. I think I am still on for 20 treatments but I’ll find out tomorrow. My seroma is finally starting to go down so hopefully your hematoma will resolve. Good luck to you on the dry run!

    UpstateNYer - hopefully your dr. is just giving worst case scenario. I would think/hope that the chemo gets rid of those tiny cancer particles floating around - that’s why I also did chemo!

    Laurencl- I hope the remapping goes well and they can get you started. The waiting is sometimes the worst part.

    Hi Yndorian! Hope you are doing well!

    Hi to PinkArmor and GiddyupGirl and everyone else!

    Polkadot- I rang the bell after my last taxol (mainly for my MIL who died in May and didn’t get the chance to ring) and it was a good feeling. If there is one at my RO, I’m ringing it as well after the Herceptin is over. Too bad there wasn’t one outside the surgery suite, I’d rang that one too! Little victories

  • polkadot1
    polkadot1 Member Posts: 46
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    PinkArmor- I'm sorry your skin is starting to show the effects. My doctor and technicians have been telling me from the start to go without a bra but duh, I do work. So i devised pretty much what you are describing. I wear a very soft thin cotton tank type undershirt with a pretty loose bra over it. It works wonderfully and is very comfortable. Hopefully your skin holds up and doesn't get much worse!

  • Xxxxxxxxxxxxxxx
    Xxxxxxxxxxxxxxx Member Posts: 551
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    Pink Armor: Someone from the August thread said that Silvadene cream did the trick when things started to get bad ... you could ask your nurse ...

  • PinkArmor
    PinkArmor Member Posts: 51
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    Thanks Ladies. It's been better today. Not near as touchy as yesterday. Hoping this will be the worst of it. Only 3 reg txs and 4 boosts. YAY!

  • dogmomrunner
    dogmomrunner Member Posts: 492
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    Hi PinkArmor! We must have posted at the same time so I didn't see that you were having some skin issues. I glad it's doing better today. I have to wear a bra also so I may try the tshirt trick

  • Spoonie77
    Spoonie77 Member Posts: 532
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    Hi ladies - just stopping by to add some encouragement to everyone. RADs is such a journey....one that changes hour by hour. Hang in there! Plus, Pink Armor love those posts! Great source of empowerment & finding inner strength.

    Two things that I learned after my RADs that I wish I would have known beforehand were these:

    1) Putting the creams in the fridge for a bit of cool relief! I wish I had this earlier but even after RADs I kept my Calendula and Miaderm in the fridge. Amazing!

    2) Scar Silicone Gel Sheets (medical grade like Sammons Preston) are a great friend to have around for angry nipples or red, painful skin. My lymphedema PT taught me about them and i sure wish I had known about then when skin was falling off my nipple. Just put some Neosporin on the areas you don't want the scar patch to stick to and it acts like a comfy cool pillow over the angry bits. Best thing is they are reusable (wash & air dry). Bought one scar sheet for $55 bucks off of Amazon and have used cut them into a few different sized pieces. Have lasted for the past 3 months with daily use.

    Good luck y'all! Its tough but there us an end in sight. You'll get there one day at a time.

  • Xxxxxxxxxxxxxxx
    Xxxxxxxxxxxxxxx Member Posts: 551
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    Hi Spoonie, thanks for stopping by. The other day I recommended to someone (now I don't remember who) your technique of boob lasagna ... LOL. I hope you are well. Kisses

  • KatherineGrace
    KatherineGrace Member Posts: 4
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    HI,

    I am also in upstate NY. I was fine until week 2 than they moved my markers and last night the burning started. I have very sensitive skin I have been using the 100% Aloe. I actually have had issues with the table from hell and my rib cage but everyone at the treatment center has been wonderful.So going into week 3 I cannot wait until this is over but I am glad I am getting better.

    Hang in there

  • Xxxxxxxxxxxxxxx
    Xxxxxxxxxxxxxxx Member Posts: 551
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    KatherineGrace: I'm sorry you had those problems ... You already did 30%. We have to make small victories count, right? Sending healing wishes to your way ❤

  • PinkArmor
    PinkArmor Member Posts: 51
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    Good Morning Ladies,

    YAY it's Friday! We get 2 days off to rest and relax. Please remember to use these days for yourself and let your bodies recharge.

    Finished # 14 today. I actually overslept this morning and had to rush to get to txs. I was so tired. Glad for the 2 days off. Skin seems to be holding were it has been- no worse. Thankful for that.

    Welcome KatherineGrace- hope you start to feel better. The tables are awful but it least it's a short time.

    Spoonie- thanks for the tips and checking in on us. Gives us a light at the end of the tunnel to hear from you.

    Thought for the day - Cancer may have started this fight; but I will finish it and I will win!

    Have a great weekend ladies. Take extra care and be good to yourself. YOU are most important right now!

  • rlws
    rlws Member Posts: 37
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    Finished 6 of 20 yesterday and met with RO. All apparently going as planned. Skin still holding up, just tired at times.

    Good luck with dry run day for dogrunnermom, it think it is today.

    Hope all the SE's are okay and improve with two days off. Never knew how the weekend could feel so differently!

    Thanks for the encouragement Spoonie, I love hearing others done.

    PinkArmor - you are almost there too, congrats and glad skin is doing better.

    Rest and recover for next week. Agree with PinkArmor, take care of YOU! we all need to stay healthy and finish this process.

    Have a blessed weekend. You are all in my prayers.

  • Xxxxxxxxxxxxxxx
    Xxxxxxxxxxxxxxx Member Posts: 551
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    15/33 done. Everything is still fine...

    Friday yeeeeahhh!!!! Have a good weekend and take care of your skin more than a Thanksgiving turkey, beautiful ladies

  • dogmomrunner
    dogmomrunner Member Posts: 492
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    Happy weekend everyone!

    I did have my dry run today. And have even more sharpie markings on my left side. This time in blue and black. I'm starting to resemble a Picasso painting. Possibly one where the nose of the subject is on top of the head or underneath an ear. Or maybe it's Jackson Pollock. The real thing starts Monday and I'm practicing holding my breath. :

  • smackan
    smackan Member Posts: 34
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    I had my simulation today also and the real thing starts Monday too. I don’t have the sharpies, I got tattoos but they are on my back so I can’t see them- and verified no holding my breath.

    I am so glad that no one has any really bad side effects yet. Have a wonderful and restful rad free weekend

  • Xxxxxxxxxxxxxxx
    Xxxxxxxxxxxxxxx Member Posts: 551
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    DogMomRunner: you have to see the bright side, you're a living art piece now, LOL

    Smackan, I love your new avatar.

  • UpstateNYer
    UpstateNYer Member Posts: 331
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    DogMomRunner&Smackan- Will be thinking of you both on Monday. Prayers that first rad session goes smoothly for you both.

    Smackan- glad you won't have to hold your breath during txt. Great news for sure.

    Yndorian1- Glad things are running smoothly for you and skin is still doing fine

    rlws & PinkArmor- glad you are both doing well, with skin issues not worsening for you.

    Giddyupgirl, Laurencl, Polkadot- thinking of you too

    Laurencl- hope your remapping goes well.

    KatherineGrace- what part of NY are you in? I am in Rochester, NY. Hope week 3 goes better for you. It helps to have compassionate techs.

    Spoonie- thanks for checking in and for all of the great encouragement and advice you share with us.

    I finished #8 of 16 last Friday. 1/2 way through.. Yippeee!! Skin is holding up great, only slightly pink.

    Hope everyone is having a restful weekend.


  • Acucindy
    Acucindy Member Posts: 8
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    I have 20 total .. 4 down. At the end of my 1st week I am super achy!! I feel flu-ish with aches. I am also really tired. I was surprised to feelnso much so early. Is anyone else achy??

  • ananda8
    ananda8 Member Posts: 1,418
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    image

  • Xxxxxxxxxxxxxxx
    Xxxxxxxxxxxxxxx Member Posts: 551
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    I feel the same as you. My knees and feet aches. My arm is bothering me too (they said it is because of the posicion on the table) I have being tired from the beginning, but it has not worsened. I also have a runny nose. My skin looks good, but my breast started to get a little sore too