Fall 2012 Rads girls......come on in!

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  • Marcia1111
    Marcia1111 Member Posts: 368
    edited September 2012

    Hi,

    I have found so much support from this site throughout my dx and treatment.  I finished chemo on Thursday and had my mapping for rads today.  I'm glad to be moving on, but feeling like this is never ending.

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  • tina_jason
    tina_jason Member Posts: 147
    edited September 2012

    Day 2 finished and so far still feeling "normal" (whatever that means).

    I can relate to the feeling of being the youngest.  I am also 41 and have felt like this at my oncologist's office, at chemo, at my surgeon's office and now at radiation.  Ugh!  Too bad we can't go to our appointments together so there will be other young ones there.

    The part I hate the most so far about rads is that when its time to start the treatment they leave you alone in the room.  For some reason that bothers me and I'm glad the tx don't last long.

    Still waiting for SE's to hit!

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  • Rose_d
    Rose_d Member Posts: 144
    edited September 2012

    Hello all.  Well #1 down, 27 to go.  It was uneventful as expected but as I keep trying to explain to my family and friends, very unsettling.  I am clearly not completely convinced that I need this part of my treatment which is not making it easier.  And I am so worried that I am screwing up my implant.

    We had a tornado watch today when I was driving to my treatment and my car battery died right before I started driving yesterday for my simulation.  Of course I keep thinking "are these signs that I should not be doing this?!".  I know that I need to just tell myself that this is the decision I have made and therefore it's the right one but I'm having a hard time doing that.  I guess I get #27 more times to try to change my attitude!

    I'm 40 (39 at diagnosis) and always feel the same way about being the youngest in the room.  At chemo every 2 weeks I usually had one of my parents with me (husband was working) and I know people were always surprised when they realized it was me there for treatment rather than them.

    I try to keep reminding myself that if I were 70 instead of 40 perhaps I wouldn't be feeling as good as I do.  But it's very hard. When I was first diagnosed I had quite a few of my mothers' friends come talk to me to tell me their own stories of cancer diagnosis and treatment.  They were all very kind and supportive and meant well, but I wanted to scream at all of them "you are 70 and I am 40!! Hearing about you having cancer does NOT make me feel better!!".

     Ok, attitude adjustment by tomorrow. I am going to see Bruce Springsteen!

    Rose

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  • Cottontail
    Cottontail Member Posts: 374
    edited February 2013

    Ladies who have already done the simulation/mapping... You have to put your arms over your head, right? The images I pulled up on google show a pillow thing the arms are resting on? Or are they flat on a table?



    Since I had a late start on my arm exercises, I'm a little behind on my arm mobility. My simulation appointment is Thursday afternoon but I'm not sure I'll be able to raise my arm by then. I was able to put my left hand on top of my head today, so I think I'll be ok if I have the pillow thing. I hope. Doing my stretches three times today and tomorrow instead of twice a day.



    I already know my actual start will be delayed because of my infection, but I really want to get the mapping done. I already have the time off work and I'm going to be really unhappy if I have to take more time to go back again. :/

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  • Jeni1962
    Jeni1962 Member Posts: 31
    edited September 2012

    Ok Ladies,

    I need your help. Hard to go back and read EVERYTHING everyone has written. I am on day 5 of RADS and have turned red from day 2 and now looks like I've been in a tanning bed for a few hours. I don't mean tan...but burned.

    So, here's where I need help.

    What are the best lotions to buy....and where do I buy them? Any suggestions everyone?

    Thanks so much!!

    Kiss Jeni 

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  • ladyfighter
    ladyfighter Member Posts: 184
    edited September 2012

    Hi ! I had simulation and mapping yesterday.



    I was laid on table arms over my head they molded my arms neck and upper back for fitting. Had cat scan. Three pen markers dots then tattoo over them. That was it. Nurses were super nice! My RO was great with me! My 1st radiation will be on 25th.



    I assume there were music during procedures ? Some of you may not know, Im deaf, I have to lay there and let my head do all the talking and thinking!? Ugh wish they had some tv with closed captions but it was supposed to be quick, in and out. I was told 45 min for first two days then 10 min for the rest.



    My friend has big aloe plants and she gave me bunch of them, I have them in refrig so I use them after treatments. I was instructed to use unscented dove soap all throughout treatments.



    My RO and my nurses told me if I ever have any questions ANY, that I shouldn't hesitate to ask them. Their number is 24/7. :)



    I also feel youngest there too I'm 49 (48 when diagnosed). Even when I had chemo, I was the youngest one, all old people like 70 to 80's . I find it hard to believe because in here in this BCO, I see all young people???



    Much love to all of you xoxox





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  • Tazzy
    Tazzy Member Posts: 2,546
    edited September 2012

    Found you again... somehow knocked this thread of my favs ???? Undecided

    Have my date of first rad October 4.  5 weeks worth of being nuked.   Had my mapping session yesterday.  Happy to have a date and be moving forward.   I agree that machine is so big and high tech and intimidating.    I am really trying my hardest to be positive that this is the last leg of this bc crap.  

    Hugs and positive healing thoughts to all

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  • Justsayyes
    Justsayyes Member Posts: 34
    edited September 2012

    Poor Jeni to be red so soon, I was pink right from the start and didn't get in trouble for another 2 weeks.  You should be seeing your doc every week, do tell him/her your concern and also ask the techs what they think.  They can tell the doc that this is going on, and help you get what you need.  My prescription Biofine was pretty good.  Also be sure you are not agrivating your skin my hot water, harsh soap. I used basis soap under my arms, very soothing.  Don't rub dry.....pat, pat, pat if you must.  Early on I did like Aquafore and a aloe gel.  Also used hydrocortisone cream for any itchiness.  These are from any drug store or grocery.  Get the aloe in the organic section of the grocery for a pure one.  Avoid color and other additives.  Mine was 99% pure, I thought that was good enough.

     Cottontail... as for the arm over the head question.  They do a mold of your upper body that helps you stay in position, and you hold onto these bars above your head that makes it easier.  Best of luck to you, I'm sure the nurses and techs will help you.

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  • Sun44
    Sun44 Member Posts: 10
    edited September 2012

    Figured I'd jump in here. I know I'm starting rads in the next month so I guess I qualify! So, I should start moisturizing myself now? I'll be honest, I am more unnerved after reading some of these posts...because I'm fair skinned. My incision for my lumpectomy is way on the side, like 2 inches from the lymph node biopsy scar (which is so bumpy and hard right now). How much skin gets affected with the rads? I'm worried it's going to wreak havoc with my biopsy site as well....thanks for letting me join you ladies!

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  • Jeni1962
    Jeni1962 Member Posts: 31
    edited September 2012

    Thanks for the ALOE adivce Justsayyes!! I will go to New Seasons this week and get some. I didn't know I would react so quickly.  Sun44...EVERYONE is different. Don't freak out by my situation. Some people have VERY little reaction...and they are fair skinned people too. So it just depends. It never hurts to start loobin' the boob right now. How much skin is affected depends on where it is in your breast. I thought just my breast only would be affected but it's a much larger area. Mine is from the middle of my chest...above and below my breast, under my arm pit and a little to my back. That is because they have to come at it at an angle. Mine is on the left side...so they have to avoid the heart and lungs as much as possible. You will be ok Sun....it's a process but...it has an ending! Wink

    I have 15 more treatments to go. Gonna lube that boob as much as possible!!

    Thanks Ladies!

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  • Andrea623
    Andrea623 Member Posts: 959
    edited September 2012

    Hi everyone! Looks like I'll be one of the fall club too. I had a BMX two weeks ago, but high grade DCIS was found in the margins, so I'm being referred to an RO. My appointment with her is next Tuesday. I had TEs put in after my surgery, and I hope they can be filled before starting rads. 

    I'm nervous about radiation treatment. It was something I was hoping to avoid, but it looks like that's not going to happen. After reading many posts, I've purchased some Glaxal Base moisturizing cream, and will be picking up pure aloe vera gel. I've read of people having good results with emu oil; has anyone tried it?

    I sure wish none of us belonged to this club, but here we are, and at least we all have each other. Good luck to everyone!

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  • Junif
    Junif Member Posts: 100
    edited September 2012

    Hi--just got back from the simulation and will start the real thing next week.  I am doing prone position and that was a little wonky with the CAT SCAN.  You are face down and moving in and out of the Scanner...all of a sudden I started feeling seasick and sweaty and then it was over.  I thought I might have to rethink the prone thing, but my RO said that I won't be moving with the radiation, the machine will move around me.  I had 4 Tats done--they are on the sides of my back.  The tech that does them actually has one on his arm to show you!!!  End date is November 9....was so hoping to be at our home FL but guess that won't be until after all the holidays...yuck...I hate Michigan winters!

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  • Andrea623
    Andrea623 Member Posts: 959
    edited September 2012

    What determines your position? I have a hard time being on my stomach. It hurts my back.

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  • Sissydi
    Sissydi Member Posts: 516
    edited September 2012

    Hi girls! Six out of 28 rads done......so far no redness , some itching, but mild....getting my energy back slowly from Taxol....been walking everyday, I'm so thankful!

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  • Junif
    Junif Member Posts: 100
    edited September 2012

    Andrea, most radiation is supine, which is face up.  I wanted prone because my cancer was in the left breast and radiation on the left side has more implications for heart and lung involvement.  Prone position was pioneered at Sloan Kettering in NY and was developed to protect more of the heart and lung.  There are a lot of different types of radiation and unfortunately most RO's don't tell you all the options and some centers only offer certain types.

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  • onestepatatimetosurvive
    onestepatatimetosurvive Member Posts: 16
    edited September 2012

    Hello Everyone!  I go tomorrow for my simulation, then they are hoping for me to have my first tx the first week of October.  I've been finished with chemo since Aug. 24, but I still have an open incision from a previous surgery for infection that they are hoping will heal up soon.  It's not completely healed, but much smaller, so I hope we can proceed because I don't like the fact that tx is being delayed. 

    Quick question...for those of you with hormone receptors positive, did you start your tamoxifen during or after radiation?  My MO said to wait until after radiation is complete, but one of the RO said to start it now before tx and just continue taking it.  I'd love to hear your experiences. 

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  • Junif
    Junif Member Posts: 100
    edited September 2012

    OneStep....my MO gave me the script and told me to wait until I was finished with RADS to start the AI..

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  • xtina
    xtina Member Posts: 60
    edited September 2012

    Hi to all of the new ladies!!

    Onestep - my med onc also recommends starting tamoxifen after rads - he still wants me to "think about it", so I have to go back to get the scrip in Oct.

    Junif - I'm in MI too - I'd love to have a summer house somewhere else - the snow stinks!!!!!! Otherwise I love MI. 

    Jeni- it seems like there's a variety, but many are using aloe in addition to other things. Just make sure it has no additives or anything that ends in a "paraben" or "aben" of any sort.  I got mine at the pharmacy at the hospital - Fruit of the Earth I think? Any "natural" store should have it as well. Oh and I love your duck analogy - so true!

    SherBear - I love your sense of humor!  Okay your situation is obviously completely NOT funny, but your descriptions are just killing me!  "Whaddya mean ‘we'?"  I am just cracking up.  Not to mention that the door to get into the actual room (which is open when you arrive, prolly so you don't freak out about it) is like an 11 inch thick 10 foot wide vault door with those giant radiation warning symbols all over it.  I guess we have to pick our poison, what is it they say, "sometimes the cure is as bad as the disease"?  So true.

    I refer to my sessions as my She-Hulk appointments, it makes my dd and my co-workers feel less freaked out about me I think.  There actually was a She-Hulk, though she had ginormous boobs, which I no longer have since the lumpectomy and reduction!

    Ladyfighter - yes, there's music, but it stinks!  The kind they play at my center is like the
    kind that they put on CD's to help you fall asleep - so it's all quiet and new-agey.  Think like the music that you think sparkling stars or a stream might make, that's it. Mine also has this light display thing above the table that you can watch, it looks like stained glass.

    Either way, I keep my eyes closed when they leave the room until they come back in.  I am really weird about things to do with eyes, like in movies when aliens stick a bracket in your eye to keep it open and then shove a needle in your eye, or in horror movies when an eye pops out. Just thinking about anything near my eyes freaks me out, which is funny since I wear contacts.  I certainly know that the machine isn't zapping my eyes, but somehow I feel like it's going to grow crazy and shoot my eye out.  I have a weird imagination.    I just don't feel like looking at that machine while it's nuking me either.

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  • xtina
    xtina Member Posts: 60
    edited September 2012

    Everyone seems to have the same sort of feelings about being so young. 

    They also keep pumping the support groups at my hospital and center, but everyone is old.  It's not that they wouldn't understand or be of some support I suppose, it's more that I don't feel like I belong there.  It's just a weird feeling.  It's like an "I'm not like them" thing.  I know you guys know what I mean.  Like JPmom said, it's not going to make me feel any better sitting there through that. 

    At least we all found our way here. 

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  • Junif
    Junif Member Posts: 100
    edited September 2012

    Xtina--I'm in Grand Rapids....and OUCH--you 'young' ones are really dissing us 'older' ones!  I'm 59 (get to say that for another two months)!!!

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  • virginiab
    virginiab Member Posts: 205
    edited September 2012

    As one of the Old Ones (I'm 66), I really understand that the younger folks feel that their issues may not be understood by the older folks. First of all, everyone who hasn't already gone through menopause naturally seems to have twice the SEs compared to those of us in the postmenopausal set. Second, a lot of the younger women have young families that they are juggling along with all the hassles and time-suck of BC treatment.

    Anyway, I'm holding on to good thoughts for young and old as we all get ourselves through this hassle and back to our regular lives.....

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  • Andrea623
    Andrea623 Member Posts: 959
    edited September 2012

    I'm 56, and would just like to send good wishes to all of us. We are all sisters in the battle against bc.

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  • havingfaith
    havingfaith Member Posts: 93
    edited September 2012

    Hello everyone- I just had my last chemo tx today and I will be going in tomorrow for my simulating appointment.  I was told by the nurse that I might start on Monday with the radiation.  I'm still a bit confused on what to do to keep the skin as healthy as possible.  Where do you start first.

    Hi Marcia- I'm so glade to see you here.  Your such a comfort. How is this going with your work?

    Kelli

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  • rn4babies
    rn4babies Member Posts: 409
    edited September 2012

    OneStep......I was told both last year and this time to start the Tamoxifen after I'm done with rads.

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  • jpmomof3
    jpmomof3 Member Posts: 643
    edited September 2012

    hi guys,

    I had number 7 of 33 today.  still minimal to no side effects.  My skin feels slightly tingly and sensitive for a few hours afterward but no redness and it is normal feeling the next day so far.  I am very fair skinned and all freckles.  the skin color isnt as important as other factors, thickness, oiliness etc.  Lots of different factors contribute to our reaction to rads so the fairs ones dont worry, it doesn doom us to getting fried!

    This does seem never ending I have been doing this for over 8 months now.  I can see the light though... A woman with BC just finished her last treatment today was leaving just as i was waiting for mine.  she was kind of dazed, crying and happy at the same time.  we will get there soon ladies.

    Older (59 is not old by the way) vs young cancer patients... we all have fucking cancer.  this shit isnt fair at any age.  but what i really hate is that i feel fucking robbed of my youth.  I am not supposed to have cancer at this age.  damnit! 

    re lima beans for nausea??? blech, that would make me nauseous... but i should probably hold my tongue cause you really never know and it cant hurt so its worth a try!

    Shebear, hope  you heal fast and can start again... this is all so surreal.  That door is something out of a bank vault of science fiction movie.  Why the hell am i going in there??? this better work...  It is hard adjusting to the new cancer me.  I dont like it.  time to get this crap over with and try to get backt o a normal life. aaahhh normal.  what's normal anymore?

    Cotton hope you can start soon!  Like others mentioned, they make a mold of the head and shoulders with you lying with your arms over your head.  gets you in the same position each time.

     Jeni, I am using alra ointment recommended by my RO.  People on another thread swore by miaderm but i havent tried it.  Aquaphor is good when you really get blistered according to my ro too... i havent gotten there yet but I am sure I will.

    Loobin the boob, i love it!

    Onestep start the tamoxifen after rads.  tamoxifen suppresses the cancer cells, if they are there we want them active- it makes the radiation affect them more.

    Whats with that prone position stuff?  seems counterintuitive to lie prone, wouldnt the heart get closer to the chest wall that way?  I am curious and will ask my RO about it next time.  she is very up on research but that was never discussed with me.

    Ladies, have a great night.  stay strong or at least try to look that way.

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  • Nkb
    Nkb Member Posts: 1,436
    edited September 2012

    I'm starting my arimidex after rads also. I asked my MO why after and he said there is some thought that since they use different mechanisms to kill or prevent cancer recurrence they might compete with each other and be less effective.

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  • Aruba
    Aruba Member Posts: 543
    edited September 2012

    Hi gang,

    Well let my countdown begin.  I had mapping , xrays and first real rad treatment all in one today. And I got the extra pleasure of doing this with that breathing device to further move my heart out of the way.  Apparently my heart lies close to the chest wall (I still chuckle when I heard that and thought....where else should it be??) so they want to move it away.  All went fine with the worst part being my arm stuck above my head for probably a full hour as they did all the prep work. Usually I think that is two separate appts. So they fitting in my times and tomorrow is 8:30 AM but Friday is 6:00 PM..hello.  As long as they get me appts for next week and beyond in the morning as my work picks up as the day goes on and i am on phone non stop some afternoons with business. My issue is I have not met with my RO since initial visit and clinical trial discussion etc.  I saw she was there today in the outside room looking in etc...but I had breathing device on etc...could not talk.  I am not even sure how many actual tx I am having ..i know about 30 some but not sure exact.  And no one has told me a thing about creams and care yet...I am asking about all this tomorrow..but if I would not ask....would they tell and when?  Always have to be my own advocate!  Think after rads over, I am to then remeet with MO who I am sure will head me toward Arimidex.  One step at a time....

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  • wintersocks
    wintersocks Member Posts: 922
    edited September 2012

    Hello Ladies,

    UK lady here. I will be starting Rads in October. My 1st appt to see onco-radiologist this Fri.

    May I join you?

        

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  • jpmomof3
    jpmomof3 Member Posts: 643
    edited September 2012

    Winter socks, welcome! Of course join us, sorry you are in the club but hope you can Get some comfort with us.



    Aruba, glad you are starting... That sounds like quite a contraption, I hope it's not too uncomfortable.

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  • Ellendou
    Ellendou Member Posts: 139
    edited September 2012

    I had my first treatment today -- only thing that bothered me was the thing they put under your neck - sure did hurt my neck, will be more careful tomorrow.  It took them about 45 minutes today, with x-rays and all, but then I need it on both sides.

    Have moved into the city and staying at the Compassion House - it is very very nice, there is 6 of us women here.  Hubby is with me til Friday, then he will head back to work.  I'm not going to bother going home on the weekends as nobody is there - so will just stay here.

    Hugs sto you all. 

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