Intro / just started rads

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  • Lisa1637
    Lisa1637 Member Posts: 101
    edited March 2013

    Glad it's going well for you, Pacools!  The comment you made about where your incision is has got me thinking.  It'll be interesting to see how saggy and draggy do sans underwire....:) 

    It all begins the day after tomorrow...

    Hope everyone is  doing okay today...cold St. Patty's day here in Chicago!

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  • Tomboy
    Tomboy Member Posts: 3,945
    edited October 2014

    just finished my 3rd week of rads which i am also getting supraclavicularly. ok. 25 out of thirty nodes tested positive for cancer at the axillary dissection. so, i am already having huge problems with lymphedema on affected side, in the arm, and in the breast before starting rads. so, the rad nurse asked me on friday, am i putting lotion on my upper back shoulder area. no,why, i asked. supraclavicularly, it. goes. all the. way. through. you.!!!!! Freaaked me out. can anyone say "radiation induced plexopathy? i really want to stop. plus, it can worsen LE........great. what the fuck. just let me die. mar 16,13

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  • april485
    april485 Member Posts: 3,257
    edited March 2013

    kathec, I know you don't want to die! You will get through this!

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  • Tomboy
    Tomboy Member Posts: 3,945
    edited October 2013

    but everything that could go wrong with me during tx seems to. i dont want to drag around a useless arm. thanks april485.

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  • Waitingforthenextstep
    Waitingforthenextstep Member Posts: 251
    edited March 2013

     Hi everyone,

                 I just had my 1st rad tx today.  It went well.  So much waiting and the tx time was less than 10 minutes.  I can't wait until later when I have more time to read this entire thread.  I am concerned about the SE's, especially the fatigue.  I've barely gotten over the fatigue I had from chemo tx's.  Is anyone doing herceptin at the same time?  I am wondering will they do the herceptin on the same day as RT?  Feel good everyone.

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  • MsW2012
    MsW2012 Member Posts: 226
    edited March 2013

    Hey, Waitingforthenextstep, we are in the same boat! I'm just about a week ahead of you. I too was worried about the fatigue, after just getting over the worst of the chemo. They gave me six weeks before starting the rads, but the Herceptin is going on every week at the same time. Luckily it's all in the same place so my weekly Herceptin infusion is scheduled for 1/2 hour after rads.

    I started a week ago Wednesday and so far, no extra fatigue. My skin is just now starting to feel sensitive in some areas and looks ever-so-slightly darker there. Unfortunately, since just a couple of days ago, I can't wear a bra. I use camis, but I don't feel comfortable walking around looking lopsided. I still feel nervous about it, even though it is going smoothly and the techs who run the machine are great. I just don't feel great about my doctor. One doctor did my orientation and treatment plan, then they turned me over to another one. The first one is only there one or two days each month. We'll see how that goes!

    Good luck. This will be a walk in the park after chemo!  :)

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  • Waitingforthenextstep
    Waitingforthenextstep Member Posts: 251
    edited March 2013

    Hi MsW,

        What type of lotion or gel are you using?  Today was my 2nd tx, in and out very quick so that was all good.  We have similar pathology too, Er-, Pr-, Her2+.  I am also doing herceptin, now every 3 weeks.  Finished with chemo. Are you getting herceptin on the same day as RT?  I am trying to find out what to expect. Feel well everyone.

              

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  • MsW2012
    MsW2012 Member Posts: 226
    edited March 2013

    Hi Waiting! Yes we do have very similar pathology. Would have been even more so I think, if I had caught mine sooner.

    I still get Herceptin weekly, because the last time I saw my onc she hadn't yet seen the followup echo report, plus I was having rapid heart rate for quite a while.

    As my surgeon explained it, Her2 positive cancer is very aggressive and fast growing so that's why they use the powerful (nasty!) Chemo drugs no matter what stage.

    On my Herceptin days I just walk over to chemo right after. No problems at all. It will be good to get down to the 3-week Herceptin schedule, but that's small potatoes compared to being done with the Tax and Carb! Woohoo, right?!

    They say drink plenty of water during rads. Oh yeah, on my skin I use a heavy vitamin e cream right after my shower in the morning, then 100% aloe gel right after my 9:30 treatment, more cream in the afternoon if I remember, then Aquaphor at night. The aloe is nice and soothing but Aqua seems to be best at keeping the skin moisturized. I may drop the e cream.

    Keep in touch, ok? I'd like to hear how you are doing.

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  • JPH
    JPH Member Posts: 35
    edited March 2013

    I have my first treatment Monday, March 25 and have not been given any type of cream or lotions?  Should I have something before I go? Or will I be given something the first day!  I feel a bit unprepared for this first trip?  I also wonder about getting the tattoos?  Is this a no brainer - they will make life easier??!!  Also I do not know how many treatments I will be getting until I get there on Monday, is this normal procedure??

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  • MsW2012
    MsW2012 Member Posts: 226
    edited March 2013

    Hi JPH. These are all questions you should ask at the radiology dept. Do you have an appt with a radiation oncologist? Maybe start by calling the American Cancer Society. They are very helpful! You should have an orientation appt with the radiology oncologist first. Hopefully that's what March 25 will be. That's when you learn all the details.

    Generally they suggest putting a good moisturizer on the area every day for a week before your treatment begins. Aquaphor is great. It's like Vaseline but it really gets the skin conditioned.

    Best wishes to you.

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  • Megroy23
    Megroy23 Member Posts: 32
    edited March 2013

    Hi JPH, I start six weeks of radiation on mon the 25th as well. I got the cat scan and fitted for my mold and my markers last week and will have an appt on Friday as a test run and any questions answered and they will give me a cream to use when I get there for first treatment. Are you sure you actually get your first round Monday? All offices are different but I didn't get from your post that all of the prep steps were complete.? They have to do their planning and marking from CT scan. And I'm a derm nurse so I pre-prep my skin w a good aquaphor or whatever you like-I always have, never hurts to keep your skin moist and supple and hydrate inside out girl- water water and then... More water! Best of luck. Private msg me if u want, the threads confuse me after awhile. Chemo brain! Ugh. Temporary .... All of this will pass and we will be some seriously strong women! Best of luck to all.

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  • Cancer-schmancer
    Cancer-schmancer Member Posts: 19
    edited March 2013

    Hello everyone. This is my first post in this thread. I start my rads today! Yikes. I have been anxious to get this thing going, but now am feeling pretty nervous. I have already started drinking water, eating protein bars and loobing the boob. I hope it helps to get a jump start. I will have 33 treatments, which takes me through May 3rd. I'll be so glad to finish before summer gets here.

    I bought some sparkly stickers at Michael's so I can wear a different message on my good side every day. Yesterday, the technicians were surprised to see "F Cancer" when they set me up for simulation. Today my message will say "It's spring" and I have some really cute flower stickers. One of them is big enough to cover my nipple, just like a pastie. Haha. I decided to do what I can to lighten up this whole experience.

    Good luck to everyone!

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  • RMlulu
    RMlulu Member Posts: 1,989
    edited March 2013

    Cancer-schmancer - LOL luv the stickers...great idea think I will add some sparkle to my laser tag. Today is 5/30 marching on :))

    Good luck to all!

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  • Lisa1637
    Lisa1637 Member Posts: 101
    edited March 2013

    Cancer Schmancer...You're making Cancer fun!!!

    I finished 4/33 today.  Am I not in the know??  How come no one has told me to start with the lotion?  Almost one week behind me and really no symptoms except a little pink or darkening. 

    Thrilled to get eggs, toast, and drink for under $3.00...can't beat a hospital cafeteria! :)

    Glad it's going along well for you RMlulu!

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  • Nat23
    Nat23 Member Posts: 45
    edited March 2013

    Hello all ;) I finished 28 rounds! Yey! I have five more! The remaining 5 are boosters...mainly focused on my scar ;) my skin held up pretty well! My shoulder, arm pit, and bad are red and sensitive but overall look really good. I wish the doctor would have told me radiation goes through! I was not pitting any cream on my back! ;( oh well...it's gonna heal!

    Great job everyone! Lotion up! U'll get through

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  • RMlulu
    RMlulu Member Posts: 1,989
    edited March 2013

    Nat23 - Yippee! The end is near:) didn't know that the rad goes through:(. Thanks for the info will add more aloe. Was told to add 1% hydrocortisone & aloe for the itch. Did you have any PT? I've got some tightness & wonder if should be massaging the area to keep soft.

    Next week Happy Dance- you will be done! Best Wishes for the boosters.

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  • MsW2012
    MsW2012 Member Posts: 226
    edited March 2013

    Evening ladies. Hey, I think it's terrible so many people here like me were never told the radiation goes through to the back. They go to so much trouble to encourage you to use the special lotions but don't tell you about the back! In fact both my RO and the techs told me "just a little where you can reach, behind your shoulder." Ha!  I have a huge rectangle of darkening skin, maybe 8" square or bigger!  And you can see clearly where I have been putting the lotion it's lighter. Also the back of my neck is getting red. (sigh) Even with the chemo, I kept feeling like there should be a general informational handout on this stuff.

    I haven't figured out why, but I keep getting this pain in a small part of my breast near the implant port. Not right where the port is but kind of next to it. Why would rads bring that on? I will have to ask.

    I have run into a lot of problems with doctors and nurses making mistakes with my treatment, big and small. I can't stress enough that we really have to be assertive with our caregivers. Everything is so compartmentalized in care now. No single person really has your whole medical picture. Even my current RO said, you have to approach your health care like you would any business. If you're not satisfied, or you have questions, get satisfaction or change providers. This is our life, ladies. We don't have to put up with inferior care. Yesterday I asked if I could see a copy of my treatment plan. The doctor came in and talked with me about what kind of information I was most interested in, and the dosimetrist is going to customize a report for me, complete with pictures. Now, that's good customer service! lol No really, it made me feel really good that the doc cared enough about my comfort level to go to all that trouble. I can't wait to see the report on Monday, showing the treatment fields, angles, doses and even the x-ray and CT images. I know not everyone wants to have that much information but for me, it will help me feel confident that I am getting the best possible care.

    Have a nice weekend!

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  • tuxtails
    tuxtails Member Posts: 39
    edited March 2013

    MsW2012,

    I had a pain close to my incision and they said it might be scar tissue and will settle down, well let's hope so! You will find the report interesting, seeing yourself on the CT scan and the angles and fields, even to see your heart and lungs...pretty cool! The Dr. also told me how much of the "allowed percentage" I would be receiving.

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  • Nat23
    Nat23 Member Posts: 45
    edited March 2013

    RMlulu ;) thanks! I'm so excited to almost be done!!! ;) boosters seem to be a piece of cake. It's only 15 seconds ;)

    what's PT? Lol ;) my skin is holding up...it started breaking... I keep putting the cream on. It should get better soon. Then I'm back to plastic surgeon to continue reconstruction ;)

    RMlulu- have u met my PS yet?

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  • gemini4
    gemini4 Member Posts: 532
    edited March 2013

    Hi all -- I feel that, because I started this thread, I should check back in to announce that yesterday was my 30th and final rads treatment!  Laughing

    It started off a little bumpy, as you can see from my earlier posts.  However, once I started consciously hydrating and had some acupuncture treatments, I felt much better.  I did develop an itchy case of folliculitis, and my underarm got a sore burn that peeled and stung.  But after Day 23, things got much better.  My underarm and whole breast were no longer treated.  Days 24-25 were boost and sup clav, and the last five days were boost only.  That break allowed the tender skin to heal up quickly.  Now that I'm one day out, at times my incision scar gets a little itchy and sometimes has quick little tinges of pain.  But nothing unbearable.

    Today I went back to the gym for the first time since early December.  It was a little scary, and I had a moment of feeling self-critical for being inactive for over three months.  But that passed, I forgave myself, and acknowledged that this is the first step of the next phase of the journey.

    I hope everyone has a smooth ride through rads!  Hugs to all.

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  • RMlulu
    RMlulu Member Posts: 1,989
    edited March 2013

    Gemini4 - Yippee! Happy Dancing :))). Must be a big sigh of relief and pride... Now life your way not focused on tx. Enjoy (((hugs)))

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  • gemini4
    gemini4 Member Posts: 532
    edited March 2013

    Thanks, RMlulu!  You know, I didn't mind going, as crazy as that sounds.  I really liked all the staff, nurses, and my RO.  The hospital was convenient, and the facility was pleasant.  I was a little worried that I might get choked up on my last day.  Fortunately, though, all hell was breaking loose at the radiation center yesterday!  There was a maintenance crew fixing some leaky ceiling tiles, the rads machine's computer wasn't booting up so I got called to come in a little later for my appointment, and the waiting area seemed crowded with a whole new batch of patients (not my usual crew).  So I had no problem making my escape out of that scene!  Wink

    One bright note, I said goodbye to a cute little old man (I'm guessing native Italian from his accent) whose treatment time was the same as mine each morning.  Anyway, turns out yesterday was his last day, too.  I was glad I was able to see him and wish him well.

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  • MsW2012
    MsW2012 Member Posts: 226
    edited March 2013

    Yay hooray! Congratulations! On to the final stretch, feeling your old self come back, woohoo! Some of us are right behind you.

    Good to know the hydrating helped. You mean drinking more water, right? It's comforting to know too that if an area gets too bad they will give it a rest.

    Happy dancin for you, whoopie!!!

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  • gemini4
    gemini4 Member Posts: 532
    edited March 2013

    Yes, hydrating = consciously increasing the water intake! :-)

    My RO said my symptoms of slight nausea and headache sounded like dehydration. Definitely improved when I upped the water! I always strived for pale or clear urine, if that makes sense.



    Actually I didn't get the break to the rads areas because my skin was breaking down. It just turned out that by the time my skin seemed like it couldn't take any more, the sessions for those areas were finished. I have read that other people here have indeed been granted a break if things get too bad.

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  • MsW2012
    MsW2012 Member Posts: 226
    edited March 2013

    Thanks gemini for clearing that up. Not looking forward to skin getting worse and possibly needing to go braless. I am quite lopsided! But looking forward to the healing phase. Then it's up to me when to do the next surgery. Yay, my life will be my own again!

    Have a great weekend!

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  • RMlulu
    RMlulu Member Posts: 1,989
    edited March 2013

    Nat23 - Yippee!!! Happy Dancing :))). So happy for you. Let us know how reconstruction goes...perky new girls soon...future is bright!

    Your PS is nice...will keep him by back pocket for now. I'm 10/28+5, but now that you shared about boosters I know this is doable...so I've got my light saber I hand and zap.

    May do so e PT physical therapy for range of movement and tightness on left side...using all services at EMC&LCCC as long as I'm here...can't wait to escape back to Horseshoe and hit the Lake:)

    Take care (((hugs)))

    Cindy

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  • Lisa1637
    Lisa1637 Member Posts: 101
    edited March 2013

    Congrats Nat & Gemini!!!!

    So I finished 8/33 yesterday and the non-event I thought this would be has given way to some SE's. 

    The radiated breast is swollen and tender..,will this last the full course of treatment?  The nurse said it's an inflammation response, which makes sense, since the rads is making it a challenge for the cells to repair.

    The journey continues...comfort for everyone! xo

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  • RMlulu
    RMlulu Member Posts: 1,989
    edited March 2013

    Hi Lisa1637 - Your score today drum roll please...9/33 another day closer to completed zaps, but so sorry that your breast is swollen and tender and inflamed ugh:((. Someone on another thread to use cool gel teething products...I'm going to get some for backup. One more day and our breast/skin/mind gets a break. Sending cool calming thoughts your way...cool breezes off Lake Michigan. (((Hugs)))

    Cindy

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  • placid44
    placid44 Member Posts: 497
    edited March 2013

    I started on Wednesday and have five weeks to go...28 total. I finish on May 3.

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  • RMlulu
    RMlulu Member Posts: 1,989
    edited March 2013

    Welcome Placid44! Yeah your 2/28! Does that include boosts? It is such a relief to begin treatment and have that unknown element over. Hope your rad team rocks and you have your light saber in hand for serious laser tag ... we're serious warriors!

    Cindy

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