Winter rads 2014-2015

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  • quiggy
    quiggy Member Posts: 315
    edited January 2015

    thanks justjean! Venting is helpful.

    I don't know why it got to me but I'm still so upset with the ROs behavior. Just another kick to the gutt like every thing else related to cancer. Plus, today is one of those emotional and stress / weepy days, tomorrow will be better. I have 28 more RADs, so I pray it won't be like this the whole time.

    BTW, I'm two months out, I mis-typed, sorry about that (Don't type and cry). 6-days of RADs done. Had a large seroma that took weeks to clear. Guess I'm a slow healer.

    The RAD nurse gave me gel pads for the burns, they are helping but hard to keep in place.

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  • PoppyK
    PoppyK Member Posts: 1,805
    edited January 2015

    LadyB, I'm having 25 treatments. I was originally scheduled for 30, but during planning it was determined that my tumor bed was destroyed during the surgery. This meant that the final 5 treatments, which were to focus on the tumor location (boosts), would not be beneficial.

    Quiggy, I don't know what kind of surgery you had, but two weeks is not that long. If you are concerned, contact the doctor that performed your surgery. They may think it's normal, or they may want to see you for an evaluation. Don't worry about your RO, they do have a narrow focus and the pain is most likely not from rads. When I get frustrated or hesitate to ask a question, I remind myself that the doctors work for me. Your RO works for you so don't worry about the looks they give you... or call them on it. "It looks like you don't believe I am in pain!" It most certainly not is all in your head! Big Hugs!

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  • quiggy
    quiggy Member Posts: 315
    edited January 2015

    thanks Poppyk. :)

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  • sweetbanker
    sweetbanker Member Posts: 22
    edited January 2015

    Five boosts to go. Have to set up tomorrow was supposed to go today but the storm had different plans. Can't believe how fast it went and it gave me a purpose of something to do everyday. My breast is a lovely pink, rash on my chest and a band of radiation burn under my breast but it's so much better than chemo. I use after treatment and before bed Cetaphil and went to the dermo for cream for the chest rash and it's has gotten better. The burn I've used A& D and that's helped RO said if it starts to peel will need to get Silverdine (sp?) My treatments have been done with me laying on my belly to minimize the exposer to my heart . It is uncomfortable but only on the days of the set up and weekly xrays .Each zapping is quick once they have you lined up.

    Quiggy- My RO and nurse both told me I may have pain in my breast some stabbing and possible itching issues they said it may come and go during treatment. So talk to the RO again and insist you do have pains and don't let them tell you any different or upset you. You make the decisions it's your body and you know what's feeling right or wrong with you.

    Still taking one day at a time but want the next 5 days to go fast lol.


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

    Well, ladies, I learned there is another side effect, and I have it. I saw RO today and mentioned I've been having trouble swallowing. She quite matter-of-fact ly told me that they are radiating up into the neck and sometimes this is a side effect. She prescribed something (don't have it yet) that will numb the throat to relax it so I can swallow.

    There's actually a whole thread on this, apparently most ROs do not want to admit it can be rads related. Mine had no qualms.

    Today was awful, they had to reposition me so I was in there way longer and shoulders in so much pain.

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  • quiggy
    quiggy Member Posts: 315
    edited January 2015

    thanks Sweetbanker. I need to be stronger, sometimes I just get lost in all this. Congrats to you my dear! The finish line is close. I'll be cheering you on.

    Madalene51, sorry about your throat. Hopefully the medicine will ease the pain. Sounds like you have a good RO, or at least she listens and responds.


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  • funthing42
    funthing42 Member Posts: 418
    edited January 2015

    Ok so here is a quick question .

    What is a chest wall recurrence.? I'm asking this because, I was told I have a chest wall recurrence and a skin recurrence locally. But I spoke to a surgeon who said that this is one in the same. So anyways I am going for Rad Sim this week. I need to be clear on this.

    I have already had rads. I'm Now on my second time.

    I was hoping that if in the skin since locally it could be taken out surgically. Wishful thinking most likely.

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  • CoyoteNV
    CoyoteNV Member Posts: 575
    edited January 2015


    mqt64 - So sorry about that. I have several excuses I can use: chemo brain (which I am finding to be invaluable), peripheral neuropathy, chemo affected my vision, bad keyboard skills, or most likely, the cat sits between me and the keyboard (facing me and staring into my eyes) I'll fox tjat ritgh niw.

    Hello ladyb1234 - Here we are together again. It's nice to see you, but sorry that you must do this.  My rads # was 28 - no boosts. I understand, we all get about the same total radiation, just divided up differently. 

    intothewoods2 - I say this all the time, but it's true; you will get great support here.  I hope your meeting with the RO goes well and you get to get started soon - so you can be finished before Spring.

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  • CoyoteNV
    CoyoteNV Member Posts: 575
    edited January 2015

    This is our list of Winter Warriors as of January 27, 2015 - I'll do my best to keep it current. Let me know if it needs a change. 

    October / November Start

    MeneK – Oct 24 ThumbsUp.................... MagicalBean - Oct 28Happy......... Mmtagirl - Nov 3 Happy

    MarieBernice6234 - Nov 4 Happy ... Hope50 - Nov 5 Happy..................  dennyvol - Nov 5 Happy

    CAS4 - Nov 6 Happy........................ Beachbaby65 - Nov 4 Happy.......... CoyoteNV - Nov 10 Happy

    Lush61 - Nov 13 ThumbsUp.................... Rosa54 - Nov 13 ThumbsUp.................  Beachlady28 – Nov 17 Happy

    Nomatterwhat - Nov 17 Happy......... LMVerma  Nov 18 Happy................ katieC12 – Nov 18 Happy

    Lorrilynne - Nov 18 ThumbsUp.............. Gongshow18 - Nov 20 Happy.........Yikes1 - Nov 20 Happy

    Birdgirl11 - Nov 23 Happy.............  Perfectlyimperfect39 - Nov 23 HappySingsing1020 -Happy

    December Start

    Pita119 - Dec 1 Happy.................. SandyLovesLucy - Dec 1Happy......... AnasNana - Dec 1 ThumbsUp

     HockeyCat - Dec 3 Happy......... . CanuckMom Dec 4 Happy................  MeanMomto3 - Dec 4 Happy

    JustJean - Dec 5 Happy...............  runningcello - Dec 9 Happy............... carynbrit - Dec 10 Happy

     ForHisGlory - Dec 10 ..................... Davida58 - Dec 10 Happy..............SCMom - Dec 11 Happy

    ILCMom - Dec 15...........................  eileenpg - Dec 16 ...................... Linzer – Dec 16 Happy

    WndrWoman - Dec 16 .............. sweetbanker - Dec 16 ....................  labelle - Dec 17 

    Slavrich - Dec 27........................InGodshands - Dec 18 .................... Catie57 - Dec 18

    lilactulip - Dec 18?..................... PoppyK - Dec 29 ............................. kpmacmill - Dec 29 

    Jlynn13 - Dec 29 ...................... gretchy - Dec 29 .............................  Bellegirl - Dec 30

    January Start

    reader425 - Jan 2..................... Purrrrana99 - Jan 5........................... Cath57 - Jan 5 

    Proffessor50 - Jan 5 ..................fossf - Jan 7 .....................................Lulubelle1 - Jan 8 

    lescover - Jan 8 ........................Nancy6540 - Jan 12 ........................ Saltygirl - Jan 12 

    aj103014 - Jan 12 .................... Fionascottie - Jan 13 ....................... Magdalene51 - Jan 15

    quiggy - Jan 19 ........................ Bippy625 - Jan 20 ............................ Dacre - Jan 20

    feelingoverwhelmed - Jan 20 ... KYBLUEEYES - Jan 20 .................. Beachbum1023 - Jan 22

    Cavalier - Jan 22 .....................  mqt64 - jan 26 .............................    Sjacobs146 - Jan 26

    Windgirl - Jan 28 

    January Start Dates Not Known

    KGotThis - Jan ? ..................ckr1956 - Jan ?

    February Start

    JeniferE - Feb 1 ........................ LARock - Feb 2 ............................. Chrissie29 - Feb 2

    ladyb1234 - Feb 9

    FebruaryStart Dates Not Known

    CassieCat - Feb ? .................... Texas94 - Feb ? .............................. intothewoods - Feb ?

    MaggieCat - Feb ?

    No Start Date Yet

     funthing42 - ?

    zjrosenthal  - Rads delayed by surgery, until ? SadHonorary Winter Warrior

    Warriors who stopped for a visit, but for various reasons didn't stick around. No start date determined.  We wish them well.

    Minnielee; surrrana99; Coloradocancermom; Shuf; bjeaneg, gemmafromlondon, knittingPT, Shayne36


    Happy= Reported Completed

    ThumbsUp = Should be Complete by now.


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  • Bippy625
    Bippy625 Member Posts: 890
    edited January 2015

    quiggy, well, I am about 7 weeks post bmx, and I still have pain and stiffness! Only when I stretch now, though, but you bet i was sore for many weeks just from swelling and surgery. In fact my RO put it off so I would not hurt so much, as I had difficulty even lifting my arms. The RO should realize it is still sore for you!

    Are you doing any stretches, or PT? I am getting PT too, even though My ROM is near to perfect, it is still stiff. Been doing my own stretching and exercises. No one stressed the importance of this to me, except in a passing way, and it is very vital to prevent frozen shoulder and preserve mobility.

    oh, I have a job interview today! i told the guy before setting it, my situation, rads schedule, etc. I said I did not want to waste his time, so if it scared him off, I understood. Guess what? He said they have a BC survivor there that finished tx last month! He said if we came to terms, my tx plan is NO PROBLEM, they work around it. What a nice change from my employer of 6 years, who could not wait to dump me at the first sign of frailty. And making me exchange my final paycheck in order to dock me 2 days, as I left earlier than expected.

    anyways, it will be good practice and nice to know someone may want to employ a BC gal. I still have things to offer


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  • quiggy
    quiggy Member Posts: 315
    edited January 2015

    Thanks Bippy625. No PT but it's ordered, just waiting to get it set up.

    No one said anything about stretching, EXCEPT here on the forum! So lucky for me, I followed advice from you all. :)

    Good luck with your interview. I imagine you'll knock it out of the park!!!

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  • Bippy625
    Bippy625 Member Posts: 890
    edited January 2015

    quiggy

    Ditto for me, this board. Learned all about it here. So many other things too....

    Well, off to rads. Lost count which number! All I know is it is gettin less each da

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  • MaggieCat
    MaggieCat Member Posts: 346
    edited January 2015

    Hello Ladies!

    Been reading your forum as I prepare for radiation therapy. Met with the RO in December. Needed to wait through 12 weeks of targeted therapy before radiation begins. See RO 2/17 and guess the sim will be scheduled at that time. Left breast, being told we'll use the breath hold technique...Being told to plan for 4 weeks away from home, living in an adult "Ronald McDonald" style house near the UNC Memorial hospital complex. In many ways I am more concerned about being away than the therapy!!!!

    Thanks for everything I've learned reading your journeys with rads!!!!

    Maggie

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  • Professor50
    Professor50 Member Posts: 220
    edited January 2015

    Oh MaggieCat being away from home that long really does sound awful. But it can only help with things like fatigue. Many people I know are just exhausted by the travel back and to. Holding my breath for my treatments I close my eyes and think about swimming in a beautiful blue ocean.

    I just finished day 18/30. The last 7 will be boosts. The techs have been just amazing: Funny, down to earth, and professional. So far, no big side effects. I told my RO that I feel like I am waiting for the other shoe to fall, that at some point, something really bad will happen... and he said, Who knows? you might just fly through this. Fingers crossed. By the way, my RO looks to be about 17 years old.

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  • mqt64
    mqt64 Member Posts: 103
    edited January 2015

    quiggy: Go for the PT. A PT can show you exercises you can do safely that will help but not hurt. I bless mine every day. No one should dismiss your pain or any other concerns. I had a major problem after my lumpectomy from the methylene blue. I had an open royal blue area on my breast and kept asking the surgeon about it and the pain and hardness and swelling in my breast. He was totally dismissive and said see you in 6 months. Eventually my mo sent me to a plastic surgeon who immediately said I needed surgery to close the wound so I could start rads. He took out a chunk of necrotic tissue and closed the wound. I still have hardness,tenderness, and shooting pains. Hope it eventually goes away. My PT also has dealt with the fat necrosis problem and has a plan for after rads are done. Good luck and trust yourself.

    Has anyone out there heard about the LIVESTRONG program through the YMCA? It's a free program for cancer survivors which attempts to focus on the whole person improving physical and mental/ emotional wellbeing. I signed up today hoping to avoid the winter doldrums.

    Take care everyone.

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  • Slavrich
    Slavrich Member Posts: 50
    edited January 2015

    MaggieCat-I've heard great things about the UNC Memorial Hospital complex. You should be in great hands there. A fun area too-lots to see and do. As my RO has said and I have found true-the best defense against the radiation fatigue is exercise. If I sit down- I can be asleep in 5 mins. But if I am active, I have so much more energy. Despite the fatigue supposedly being cummulative, I have been feeling better than I have felt in a year-when I started chemo. My radiation was delayed by a broken machine and the New England weather, but I have 4 more treatments/28 and will be finished Tuesday! Good luck to you.

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  • PoppyK
    PoppyK Member Posts: 1,805
    edited January 2015

    MaggieCat, I'm on the West Coast, but my med center has housing for those who must travel for treatment. It also has activity programs scheduled for those in radiation treatment as well as those who have travelled to obtain treatment. The activities include a local gym membership, potluck dinners, tennis and golf, lectures, tours of the city and so on. Perhaps UNC will have similar program. BTW, my Daddy lives outside Raleigh. It is a lovely city with much to see... even with rads.

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  • JustJean
    JustJean Member Posts: 327
    edited January 2015

    I wish I had been one of the lucky ones that could have benefited from exercise to get rid of some of that fatigue. Sure did not work for me and yet I still had to pay the bill for the gym, lol!

    Got a little surprise last night, a week after finishing rads. One of the areas under my arm that had been fried the worst just sloughed off - about a 2x4" piece and a smaller area about an inch below it. Break out the Silvadene!


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  • PoppyK
    PoppyK Member Posts: 1,805
    edited January 2015

    I have never, ever had to stuff my bra. But now I have a soft, fuzzy sock in my bra to protect the black area in the crease under my breast. My irradiated, red breast hurts to much to go braless. I'm wearing the loosest stretchy bra I could find. I must say, after 4 weeks of treatment, the SE are getting pretty bad.

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  • WndrWoman
    WndrWoman Member Posts: 333
    edited January 2015

    JustJean I am now peeling in two areas and RO said to be sure to dab on the Silvadene, not to rub it in. If you rub, you can rub off the newly growing skin which she described as little islands that will eventually hook up. Sure hope it works quickly.

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  • WndrWoman
    WndrWoman Member Posts: 333
    edited January 2015

    Sorry PoppyK that you are so uncomfortable. What are you using? I used Aquafor in the fold and I only just started with a little peeling area around #25. Now told to put Silvadene there. I kind of miss the soothing Aquafor but must deal with breaks in the skin now. I go back and forth between bra of some kind and no bra, cotton bra against skin and bra outside cotton top. Hope you get relief soon.

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  • Beachlady28
    Beachlady28 Member Posts: 54
    edited January 2015
    Hello to all,
    Anyone have this problem: Am 4 months pst surgery and 3 weeks post rads. Did some snow shoveling yesterday and day before. Probably should not have done so because now I have more frequent sharp and shooting pains plus more itching. Just too eager to get back to normal but I see that I still have to take to easy. Only cleaned the steps and made a path for my dog to go outside. Hope I did no damage. Using a warm compress which seems to help. Any thots from fellow winter warriors?
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  • JustJean
    JustJean Member Posts: 327
    edited January 2015

    WndrWoman, that's what I'm doing. I read the directions very thoroughly before using but there's nothing there right now but red oozing flesh, no skin at all. I know it will come in time, but my preference would have been to avoid any more pain than I already deal with every freaking minute of every freaking day.

    This "gift" can stop giving any time. I'm really really really really sick of it.

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  • quiggy
    quiggy Member Posts: 315
    edited January 2015

    JustJean, no words but sending you gentle hugs. 😞

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  • quiggy
    quiggy Member Posts: 315
    edited January 2015

    Hi BC sisters;

    After RADs today, nurse wanted to talk. She'd seen my chart and said she wanted to follow up on the pain and burns.

    I lost it, cried and then explained that the doctor was dismissive and questioned the pain I mentioned. I told the nurse it cracked me to the core and I was upset still. Happy to report she seemed genuinely concerned and reassured me the pain was typical and valid.

    I felt better but could not stop crying. Took another hour after my drive home to finally pull myself together.

    I'm feeling like a drama queen! I'm not sleeping, hurting, stressed, tired (mentally and physically).

    Thinking we all need a nice, long vacation on a warm sunny beach, with boat drinks!!!

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  • PoppyK
    PoppyK Member Posts: 1,805
    edited January 2015

    Gentle hugs, JustJean and Quiggy.

    I'm so sick of all this cancer crap, too! If I thought my liver could handle it, I would join you in a boat drink!

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

    JustJean, Quiggy, and PoppyK, where are the boat drinks? I would love to join you! I'm pretty sure we can all say what is necessary, drama or not! I want to see the person that gets through cancer without ranting, raving, drama, and tears. I've had all of those at the same time! I'm going to rad #4 Thursday, and my treatment area feels warm and tender tonight. I was told that I shouldn't notice anything until the end of week 3 or 4. Not so sure about that one. And all the sharpie dots, very attractive. I look like I got attacked by some crazed dot to dot coloring book artist! Seriously, I thought sharpie markers were school supplies. I'm glad that it's cold in Ohio, and I can cover it with a big collar and a scarf. So for those ahead of me, what should I expect to happen? I've seen some pretty scary things about rads. And it kinda creeps me out, not sure why, and I thought chemo was a trip!

    Have a great day all, I hope you feel well.

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  • Fionascottie
    Fionascottie Member Posts: 78
    edited January 2015

    Professor50, I have used the same imagery......ocean waves on the beach.....during my breath holding treatments! I've also tried picturing the radiation as a colorful beam, turning red cancer cells to nothing!

    Radiation time has turned into a kind of reflection time for me. The last of the 3 major components of treatment. I found my tumor the first week of April last year and I've just been ploughing through treatment sine the end of May. It took almost two months for diagnostic tests and a treatment plan to be put in place. Then chemo, surgery, and now, radiation. After radiation there will be hormone therapy to ward off recurrence, but treatment per se will end. I find myself tearing up a lot. I haven't cried through all this, even during some hellish SE s from chemo. Now, anticipating the end, I am so emotional....I guess it is kind of like letting yourself relax after a crisis.

    Today, treatment 15 out of 33. Checking them off. Wondering what life will be like after treatment. Tearing up again!





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  • Bippy625
    Bippy625 Member Posts: 890
    edited January 2015

    fiona, you nailed it.

    Rads is surreal. i too will complete all tx by July, then be on pill. It will be scary and weird to not be doing any tx, though I do not want it either! At least now I have herceptin.....

    But, I want my port OUT. I want my life back, with no labs, ivs, or dr appts each month. No more weigh ins. I want to work amd travel

    Is anyone else putting off recon? My PS will not do anything till after rads anyway. I was pissed at first but now.....happy to wait, even a year or more. i just need a break.

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  • WndrWoman
    WndrWoman Member Posts: 333
    edited January 2015

    quiggy I've had enough "sun" but I'll join you at the swim up bar for a rum drink with a little umbrella. Glad the nurse was more understanding and responsive. I find a caring response often is what releases the tears. As my kind techs are always saying, "that's normal". A couple of good night's sleep would help a lot.

    JustJean Your road has been long and hard. I have a friend with a son with Juvenile Diabetes and I came to understand how the day after day after day dealing with it wears you down. There is never a day off. I feel for you.

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