Winter rads 2014-2015

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  • dacre
    dacre Member Posts: 84
    edited March 2015

    To: WheelyGirl - I started with the aloe/aquaphor right from the beginning, even though, I didn't need it immediately. I didn't know when I would, so I figured it certainly couldn't hurt to be ahead of the game :) Although it seemed like an eternity, the 6 1/2 weeks have gone by pretty quickly. I think it's just realizing that this is going to be everyday that seems overwhelming in the beginning. Was used to going to the Oncologist once a week, but everyday, wasn't sure I could handle that....I was pretty hysterical at the very beginning and I had a huge melt down....but after that, everything was better, I hesitate to say "fine" b/c under the circumstances, it's never going to be "fine".

    Quiqqy - I should've been done on Monday too! Alas, was too sick with a cold ... add 1 day, then President's day they closed the office, add 1 day! On Monday, while I'm having my "boost" I will be "cheering for you - in my mind of course"! CELEBRATE! :)

    Regarding the question: "cancer free"....my oncologist told me from the very start...I will never be cancer free. She wasn't trying to scare me, but she was being honest. I appreciated her honesty, b/c I kept thinking in my mind that "if I did everything I was supposed to, then the cancer would be gone and I would never have to worry again".... My oncologist is the sweetest, kindest, caring person, but she also wanted me to realize that this is something I will have to be dealing with for a while. I love knowing and being told the truth....but sometimes it takes my breath away.


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  • kayfry
    kayfry Member Posts: 481
    edited March 2015

    mqt64, I talk big :) In reality, I wound up shoveling a ton of very, very heavy snow and freezing my ass off doing it, and I laugh at the thought of the elliptical machine now. Nor have I yet gotten much work done on my way-overdue revisions for what I laughingly call my "work." And now I'm too pooped to really get excited about cooking anything for dinner, either. Ha. I knew that as I get into rads, I'd battle the predicted fatigue, and with all the driving to and from treatments, the work deadline, my poor, neglected horse, my dogs, keeping up a reasonable amount of exercise, probably cooking and housework, such as it is, would have to go. But I didn't expect that to happen by Day 2 of rads. Winter doesn't seem to care about my little breast cancer issue :) At least I don't notice any skin effects yet, although I must admit the boob feels a little sore one the inside, somehow.

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  • kayfry
    kayfry Member Posts: 481
    edited March 2015

    quiggy, I think NED is pretty fine. Because when you think about it, how can anyone ever be declared "cancer free"?? How many women, and even just people in general, are walking around with cancers, or pre-cancers, or early cancers that they aren't even aware they have? Even when we've successfully beaten back the cancer we had, we're still human beings, and human beings get cancers. So do dogs, by the way. It's kind of what we get for living, that little bit of risk. Once I get through rads, I will be happy to take NED. At least we've been poked and prodded and imaged and radiated, and had the cancer cells cut out of us, and had the remaining ones poisoned in many cases. So at least we kind of know where we stand, better than a lot of folks. That's my take, anyway.

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  • kayfry
    kayfry Member Posts: 481
    edited March 2015

    I was advised to start putting on the recommended product the day I started rads, though on the product info it even suggests starting a week or two before. My RO team recommends a product called Miaderm, rather than Aquaphor, though I was told Aquaphor is fine, they just like Miaderm better. It's basically calendula, hyaluronate, and aloe vera, more of a lotion than the greasy, sticky Vaseline-like Aquaphor, so I'm happy with that recommendation. I will not hesitate to use some hydrocortisone should I need it at any point. In the many weeks between surgery and finally starting rads, I had collected a little stash of skin products. I used Jean's Cream for about 2 weeks prior to starting treatment this week, but I was advised not to use it during treatment because it has Vit. E which may interfere with the effectiveness of treatments. But it's really nice for general moisturizing. I have a small tube of Aquaphor, and one or two other things. Some free samples I was given by my dermatologist. I figure all of them will be fine for other purposes, nothing wasted. Cracking fingers in winter are always a big issue for me, so I'm fully prepared to deal with it now! For years and years . . .. . .

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

    Beachbum, I had the same experience (but may be not as painful as yours?) and told my RO. She immediately asked if I needed something for the pain. I say WT#@ with your RO. Fortunately, I already had a stash of Norco left over from surgery. I also get PT once a week to help with streching that area during RADs.

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  • mqt64
    mqt64 Member Posts: 103
    edited March 2015

    Beachbum, I'm sorry you're having so much pain. Part of what might be happening with your axilla is spasm of those tendons due to inflammation. Then they pull on the breast/ chest tissues and muscles. It's similar to the cording after surgery. I had them due to all the inflammation from the dye and they took my breath away. I still get the shooting pains to my nipple. Believe it or not anti- inflammatory meds might help.I got a muscle relaxer too which helped more because they were fewer and not as hard. You definitely are not crazy. Take care.

    Quiggy, belated congrats on finishing!

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  • JeniferE
    JeniferE Member Posts: 130
    edited March 2015

    Cbooklvr,

    Are you at Herrick in Berkeley for your treatment? (Alta Bates Summit Comprehensive Cancer Center) This is where I had chemo and my current rad treatment. Had #20 today. The techs are really great. Still a couple of weeks to go. I repeat in my mind "kill cancer cells" as the beams zap my breast!

    Jeni

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

    Lotions, etc: I started calendula once a day, right after treatment, and aloe in the evening, from Day 1. I now do some aquaphor too, as things are getting pinker. I use hydrocortisone for itchy spots.

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  • WndrWoman
    WndrWoman Member Posts: 333
    edited March 2015

    So much has been going on here! Such a great group including all you newer March folks.

    Thanks to those who responded to my question about creaming post rads. I am sick of Silvadene for sure For those just starting my instructions were to put stuff on right from the start. Tried a few things but settled on Calendula cream which is not so sticky and messy and the gooey Aquafor as needed. Did it right in the dressing room.

    I tried cotton seamless bras from Fruit of the Loom and Bestform. Quite nice and soft but not full enough for us D cups. Wore a sports bra over a t-shirt or cami. Favorite is a cotton front closure leisure bra from Vermont Country Store because it has sizes for various cups. It has seams but I just wear it inside out.

    Sorry for those in pain. Thrilled for those about to finish. For those just underway, wishing you smooth sailing and caring providers.

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  • chtease
    chtease Member Posts: 24
    edited March 2015

    I need some advice. Should I go with The Macallan 12 tonight and save the Bowmore 18 for the weekend or should I go with the Bowmore twice?

    I FINISHED RADS TODAY and my first wee dram since New Year's Eve seems to be in order.

    I have no idea what I'll do with myself at 2:15 pm tomorrow. Need advice on that too.

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

    chtease - congrats are in order for such a huge milestone! 12 tonight, 12 tomorrow, you get it just repeat! Be safe.

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  • WheelyGirl
    WheelyGirl Member Posts: 181
    edited March 2015

    Okay, another stupid question...where do you buy calendula cream?  And can you use the cortizone at the same time?  I have extremely dry itchy skin especially in cooler weather so I am more worried about the itching being bothersome than anything else.

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  • WndrWoman
    WndrWoman Member Posts: 333
    edited March 2015

    Chtease. Way to go!

    WheelyGirl. I got the Calendula cream from Amazon and at Whole Foods (probably any healthy foods store with health products). There is a gel and a lotion but I used the cream. In the end including some post treatments I used 4 tubes (sold in a box).

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  • WndrWoman
    WndrWoman Member Posts: 333
    edited March 2015

    WheelyGirl. With your type of skin be sure to drink tons of water to stay hydrated - 64 oz. a day. You could ask the nurse about using both. I was told it was ok for the Silvadene and Calendula to mix. You may find the itchy area is limited and can target the cortisone there. Hope it doesn't give you much trouble.

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  • WndrWoman
    WndrWoman Member Posts: 333
    edited March 2015

    Farmerma. LOL - loved your story about exchange with techs.

    About gift for techs even though it is too late, I had brought sweets over the holidays so at the end I brought a bag of Clementines. The lead tech is an expectant grandmother so I had also made a booklist of board books for her. Wonderful techs make all the difference.

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  • kayfry
    kayfry Member Posts: 481
    edited March 2015

    WheelyGirl, because I live kind of out in the country far from good stores, I tend to order a lot of stuff from Amazon, so I know you can get calendula cream, aloe vera, and all that stuff that way. Also any good drug store or, as already mentioned, Whole Foods or Wegman's. I have very itchy, dry skin in the winter, too. You can put any moisturizer you like on the rest of your body, just not on the treated breast. I just picked up a big pump bottle of Aveeno extra-moisturizing, unscented lotion for the rest of me. You can buy the lower-strength cortisone over the counter at any drug store or the above places too, and I'm sure you can use it judiciously while also using calendula, but I'd ask. For more severe skin reactions, which I hope neither of us will have, you can get a stronger cortisone by prescription, probably from your RO? I've heard either mometasone furoate or betamethisone cream are very helpful.

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  • CoyoteNV
    CoyoteNV Member Posts: 575
    edited March 2015

    This is our list of Winter Warriors as of March 6, 2015 - We are still growing!  The Winter Warrior sign up will be over soon.  Our Spring will be a new beginning.

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

    eileenpg - Dec 16 Happy.............. Linzer – Dec 16 Happy....................... WndrWoman - Dec 16 Happy

     sweetbanker - Dec 16 Happy........  labelle - Dec 17 Happy.......................  Slavrich - Dec 27Happy

    InGodshands - Dec 18 Happy....... Catie57 - Dec 18 Happy........................ lilactulip - Dec 18 ThumbsUp

     PoppyK - Dec 29 Happy.............. kpmacmill - Dec 29 Happy....................  Jlynn13 - Dec 29 ThumbsUp

     gretchy - Dec 29  ThumbsUp...............Bellegirl - Dec 30 Happy

    January Start

    reader425 - Jan 2 Happy................ILCMom - Jan 2 ThumbsUp....................... Purrrrana99 - Jan 5 ThumbsUp

    Cath57 - Jan 5 ThumbsUp .................. Professor50 - Jan 5 Happy....................fossf - Jan 7ThumbsUp

    Lulubelle1 - Jan 8 Happy............. lescover - Jan 8 Happy.......................  Nancy6540 - Jan 12 .Happy

    Saltygirl - Jan 12  Happy...............aj103014 - Jan 12 Happy.................... Fionascottie - Jan 13 Happy 

    Magdalene51 - Jan 15 .............. quiggy - Jan 19  Happy....................... Annie88 - Jan 19 Happy

    chtease - Jan 19 Happy................ Bippy625 - Jan 20 Happy......................Dacre - Jan 20

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

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

    Windgirl - Jan 28 .......................  Hotdogmommy - Jan 29

    February Start

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

    gemmafromlondon - Feb 2 Happy.keri71 - Feb 6?.............................  ladyb1234 - Feb 9

    Mm68 - Feb 10 .......................... CassieCat - Feb 12 ..................... Texas94 - Feb 16

    Leslie58 - Feb 16 ......................  farmerma - Feb 23 .................... Dotwithkitties - Feb 23

    SunnySydeUp - Feb 23 ............ Allmodestyisgone - Feb 24 ............ brandyrose - Feb 26

    Scubawoman - Feb 26

    February Start Dates Not Known

    intothewoods - Feb ?..................... MaggieCat - Feb ? ..................... ThinkingPositive - Feb ?

    March Start

    gtlucky - Mar 2 ............................. sybilskelton - Mar 2.....................  Kayfry - Mar 4 

    WheelyGirl - March 5 ................... Booklady1 - Mar 9 .................... zjrosenthal Mar 16

    Redhead01 - Mar ? ...................... cbooklvr - Mar ? ........................... Shelleym1 - Mar ?

    Special Sister Warriors and 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, knittingPT, Shayne36, KGotThis, ckr1956, funthing42

    Mary59G Happy- No Rads needed !!

    Happy= Reported Complete

    ThumbsUp = Should be Complete by now.


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

    I had my sims yeaterday and am scheduled to start rads on March 16th. May I stay here or should I move to spring rads when it opens? Love, Jean

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  • CoyoteNV
    CoyoteNV Member Posts: 575
    edited March 2015


    Quiggy ~ somehow I missed your "I'm done!" post.  I'm sorry. I want to get that smiley on board asap.  Congrats to you!

    chtease ~ congratulations for finishing rads.  Have a super week end!

    zj ~ You can do both!  The Spring group will need your experience and can offer even more support... we all need that for sure.  ladyb1234 created the August chemo group and was an active part of the July group. 

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  • quiggy
    quiggy Member Posts: 315
    edited March 2015

    Thanks CoyoteNV. I'm done on Monday the 9th. Close enough!

    Thank you so much for keeping this special list and for creating this discussion group.

    Through your work, so many of us have found comfort and help when we needed it most. For me, this is the only place I can discuss my cancer and all the issues. I'm grateful for this.

    Be well sister. :)

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  • DaisyQ
    DaisyQ Member Posts: 123
    edited March 2015

    For those of us starting radiation this spring, I created a new Spring 2015 Radiation thread. I have been following the Winter Rads thread and feel like I'll be going into treatment next week prepared and ready to go.

    Congrats to all who have finished radiation and to those on their way .. godspeed and healing thoughts!

    Amy

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  • mqt64
    mqt64 Member Posts: 103
    edited March 2015

    Congratulations chtease! Onward and upward!

    Coyote NV, Thanks for keeping us all straight! When you get time I'll take that smiley face! They gave me a signed diploma too! So glad to be done. Tears of joy and thanksgiving on the way home.

    Just a word about creams and lotions...get the unscented kind with as few additives as possible. Someone gave me a jar of calendula butter and I reacted with itching and redness. Could have been something else in there too. You can also get hydrocortisone cream with aloe otc that my ro said was ok. He also prescribed a combined aquafor/ hydrocortisone cream so that must be ok too.

    Quiggy, sorry, I misunderstood and thought you were done! One more! Beachbum, 3 more! Almost done!

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  • gemmafromlondon
    gemmafromlondon Member Posts: 138
    edited March 2015

    CoyoteNV - thanks for compiling the list of the roasted and toasted. Over 100 of us in just this little site; imagine how many women there are worldwide. Grim. But we are the lucky ones to have had treatment and the support of others here. Many thanks to all.

    Interesting news here today of new research into culturing genetic killers for cancer. A leading London hospital has just got a mega grant to try and see what they can do. Let's hope excision, chemo and rads will be dinosaur treatments in the not too distant future.

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  • SunnySydeUp
    SunnySydeUp Member Posts: 21
    edited March 2015

    Officially 25% done with rads- 8 of 32 completed! Just staring to notice a faint tanning- calendula cream is lovely and soothing! Came in to work afterwards and received a sweet care package from my coworkers celebrating the end of my first full week of treatment. So grateful for all the love and support!

    wheelygirl- Amazon has been a godsend! For awhile I was getting daily deliveries of creams and bras. Just like shopping for a trip (that I didn't want to go on)!

    Chtease- congrats on finishing!

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

    Finished 19 of 25 today! Yippy! My skin has been darking since week 2 and continues to get more tender under the arms, on the clavicle and around the nipple. The mixture that a slather on is oh so soothing. RO feels I may need pads to help next week but praying that I don't. The mouthwash that was prescribed to me is taking care of the sore thoart that has occured from RADs to the clavicle area.

    Chtease- congrats on finishing!

    CoyoteNV, thanks for keeping all of us straight! I love the way you have animated the progress for each of us. Can't wait to see the finished sign next to my name.

    All have a treatment free weekend and take care of that skin!


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  • WndrWoman
    WndrWoman Member Posts: 333
    edited March 2015

    gemmafromlondon. HBO has been running a show in the States on using viruses against certain cancers - particular blood and brain cancers. Pictures show the virus cells eating the cancer cells like Pac-Man video game. They hope it will be effective against other types of cancer.

    Ken Burns is doing a show called Emperor of All Maladies (same as book) on PBS at the end of this month - 6 hours featuring doctor author of book.

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  • mqt64
    mqt64 Member Posts: 103
    edited March 2015

    Off to dinner at our favorite Italian place to celebrate being Done, Done, Done with rads! Might even indulge in a glass of red!

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  • gemmafromlondon
    gemmafromlondon Member Posts: 138
    edited March 2015

    Thanks Wndrwoman for the info. Have a good evening mqt64! A good weekend to everyone.

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

    Congrats mqt! Enjoy dinner. :)

    I'm getting herceptin right now and then head downstairs for rad #17 after I'm done here. This is how we party on Fridays around here. ;)

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  • WndrWoman
    WndrWoman Member Posts: 333
    edited March 2015

    Super Duper news mqt64!

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