July 2011 rads

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  • PSU222
    PSU222 Member Posts: 127
    edited July 2011

    Hello Ladies,

    I am on the July schedule as well.  My simulation was done last week and tomorrow is treatment #1 of at least 33.  

    I am confused on the do's and don'ts...  Can you wear deodorants?  Natural type like Tom's?  

     Holy cow it's 95 degrees!!  I just can't imagine working all day and then going to rads w/no deodorant.  My instruction sheets advise corn starch for underarms.  Is this for real?

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  • pejkug3
    pejkug3 Member Posts: 902
    edited July 2011

    I know I'm not trying the corn starch.  When I've used cornstarch powder in the past for *ahem* sweating and chafing issues, I've ended up with boils.  No thank you. 

    My Tom's deodorant was approved by the RO.  He had never heard of it before but I had it in my purse and it was given a green light.  :)

    My office has mentioned NOTHING about skin creams.  Not a word.  But I'm using things recommended on BCO and not mentioning it to them.  They already think I'm a troublesome patient - I'm not arguing with them over creams.

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  • Merilee
    Merilee Member Posts: 3,047
    edited July 2011

    I am happy to report that I had a very nice experience with the RO. The first thing he did was reassure me that they were not going to make my hair fall out, make me radio active, make me nauseous, or burn me. I was a little surprised. He said that the worst it will get is that my top layer of skin may peel like an old sunburn might. I will be evaluated weekly to see if anything needs to be adjusted down and if I have any problems in between he will see me that day.

    They put me in a cat scan that has the capacity of a computer  lining up the beams so that they do not hit my heart, lungs or thyroid. Pretty nifty equipment. I will get 30 beams of healing light monday - friday. He does not want to start till the 25 of July to give my body time to regenerate itself after chemo.

    Then he revealed to me that he is a Cancer survivor- Ah ha he gets it Wink

    Yippy! Two weeks of freedom, I won't know what to do with myself. lol

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  • Lena
    Lena Member Posts: 1,036
    edited July 2011

    Merilee, I was thinking how I had a week and a half of pure freedom -- the time from after the simulation until going for the films (the 12th) and beginning actual treatment (the 13th), which got pushed out several days due to computer issues messing with the calculations for my plan, so then I actually got HAPPIER: films are now on the 15th and rads start on the 18th. They called to tell me this yesterday morning. OK, so more free time to feel good, right? No dammit, I had to get a kidney infection! If I'm sounding even crankier than I usually am (and I know, that's pretty damn cranky LOL) it's because I got NO SLEEP AT ALL last night -- the pain was so bad; I took my sleeping pills, went to bed and hoped I'd pass out, but couldn't it hurt too much. My Pack Rat ended up having to take me to the emergency room (at 1-something AM). So that's how I know it was a kidney infection. Given the nature and location of the pain, I was really surprised by that diagnosis: I'd thought it was either a blocked bowel or appendicitis! Well the pain meds (they gave me Dilaudid in an IV while there plus Zofran since I was also nauseous), then Percocet pils to take at home) work completely and I'm picking up an antibiotic at the pharmacy in a little while, so hopefully I'll kick this bugger's butt quickly enough so I can enjoy most of the "extra" few days before rads. Oh, and that's great you have such an understanding radiation oncologist too. Did he tell you what kind of cancer he'd had?

    Enjoy your free time! Live while you can!  :-) 

    Pejkug, my radiation oncologist said no deodorant during rads unless I use cornstarch or Tom's (which she had to explain to me since I'd never heard of it). I'll look into finding out where to buy the Tom's, but...I know this is going to sound gross maybe but I think I'll be OK with just showering regularly and just taking a break from deodorant until I finish rads. I've been using Secret stick deodorants for years, but truth be told, ever since my estrogen dried up from chemo and AIs, I don't think I really "need" deodorant anymore, not like I used to. I just don't "smell" as much! I don't get it -- before I had chemo, at the end of the day I KNEW I NEEDED to take a shower in a big way (I take NIGHTLY showers), but since then, unless it's really hot and I've been really physically active, I hardly even smell at all anymore (and not very BADLY). Weird huh? Well, OK, so I maintained my same shower rituals from habit and also because I sometimes wanted to ENJOY a nice cool (or nice hot) shower, including continuing to use the Secret deodorant anyway (currently still using it since my rads haven't started yet) after losing my estrogen, but only because I think it smells nice on its own merit. So, I'm going to see how it goes with just my nightly showers only, and THEN get some Tom's if it turns out I estimate wrong on on this one.

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  • Merilee
    Merilee Member Posts: 3,047
    edited July 2011

    Lena

    Mind sharing which AL you are on and how that is going? How did you decide which one to use?

    Sorry to hear about your infection, sending you healing thoughts

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  • Lena
    Lena Member Posts: 1,036
    edited July 2011

    Merilee -- what's an AL?  A typo? LOL! I took *AIs* (Aromatase Inhibitors) -- all three of them, in order: Femara, Aromasin, Arimidex. *I* did not decide to take them -- as in, they were not my idea in the first place and I almost went off them "prematurely" due to the fact that I could not stand the side effects -- horrible! I'll never take them again. What happened was that as soon as I finished chemo, my oncologist put me on Tamoxifen, which I seemed to be doing fine on and it was keeping me stable. Unfortunately, when I'd been taking the Tamoxifen for 5 months I developed a deep vein thrombosis in my splenic portal vein. It was totally asymptomatic, I had no idea I had it. My onc found it on one of my routine cancer scans.

    So no more Tamoxifen; he started me on Femara and the 16 months of hell began. AIs were so awful for me (I could only just BARELY tolerate them on an antidepressant, which only partially helped and of course couldn't stop the horrible joint pains, hurting hands and feet, and feeling like a 90-year-old). I was actually GLAD I had PROGRESSION because that made my oncologist say I could go off it (I was on Arimidex at the time). How bad is THAT?

    Oh and I'm also on Coumadin for the DVT. Fun fun fun! LOL

    Thanks for the well wish. Picked up my antibiotic today and started it.  Pain and nausea are gone. :-) 

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  • Elizabeth1889
    Elizabeth1889 Member Posts: 1,036
    edited July 2011

    Merilee,

    I am glad that you had a good experience with your RO.  You deserve it!  I wish mine was as understanding as yours. 

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  • Elizabeth1889
    Elizabeth1889 Member Posts: 1,036
    edited July 2011

    I know what everyone means about enjoying your free time before the daily rad treatments begin. Today is my last day of freedom before the routine begins.  DH and I went to Cape Cod and had a fantastic time.  The memories will carry me through the next six weeks.  Tomorrow I go for the dry run and treatment #1 will start on Monday.  For some reason, I am dreading this procedure more than chemo. 

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  • DenimBlue
    DenimBlue Member Posts: 23
    edited July 2011

    My first treatment was yesterday, July 6.

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  • DenimBlue
    DenimBlue Member Posts: 23
    edited July 2011

    The radiation nurse told me I could use deoderant - just to put it on after the treatments, not before. He didn't ask me what kind of deoderant I use; I do use Tom's because my skin is sensitive.

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  • Maybe484
    Maybe484 Member Posts: 170
    edited July 2011

    Wishing everyone well.  I just realized that today I'll be having rad 7 on 7/7.  I should've bought a scratch-off!

    With all of my paint markings I officially look like some sort of weird bc tribal priestess.  I have taken photos (perversely I somehow want to "document" this "journey") of my tribal markings as they become more and more extensive.  Yesterday, as two of the techs were "painting me" and I was looking at all of the machinery, I started thinking about being on the set of a bad sci fi flick. 

    Would've appreciated the advance notice from my RO or someone that after every 5th treatment I'd have to lie "in position" for 45 min. to an hour as I did at rad #1.  I'd read about periodic x-raying for re-positioning on the June thread and had asked one of my nurses, but he didn't indicate that the time required would be as extensive as it was the first time or when I'd have it. I wish I'd taken an anti-inflammatory and also an anti-anxiety med.  With two axilla surgeries, it's even more difficult now for me to keep my arm above my head and "in position" for extended time.

    Off to the lab to be what's on the slab.

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  • LovesChristmas-Barb
    LovesChristmas-Barb Member Posts: 706
    edited July 2011

    Maybe484 Wow...45 minutes for x-rays? I had mine Tuesday and they took about 5 minutes. How awful for you!

    I had number 8 today and I just find the whole experience a bit humiliating and surreal. I loathe the whining noise the machine makes when it's working. I've been dreaming about it at night and in my dreams, they're hitting my face or some other part of my body accidentally. Can't even escape the experience at night!Tongue out

    Welcome to all of the new ladies! I'm losing track of who everyone is...

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  • LindaJanette
    LindaJanette Member Posts: 71
    edited July 2011

    Hi Girls Thanks for all the cream advice- 

    The first time I went in the nurse said dont worry I have ton's of cream

    When I finished my mapping i asked her about the creams, she gave me a chapstick sized aquafor

    cream... I was like geez thanks..

    So some of the other creams you mention you can just buy over the counter?

    someone mentioned a food chart I could not find that would you mind telling me a little more specifically where it is..

    Thanks- put off start date until Monday scar to red under my arm - saw onclogist and she went to run the onchotype won't have those results for 2 1/2 weeks...

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  • LindaJanette
    LindaJanette Member Posts: 71
    edited July 2011

    Wow Lena.. my onc said I should be starting the Arimidex in two weeks I am fundamentally against it and have only read horrible things about it.

    I dont know... 

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  • pejkug3
    pejkug3 Member Posts: 902
    edited July 2011

    Today was #7/33.  My incisions (that are right under my arm) are sore and burning.  No redness or anything yet.

    Barb58 - I'm finding this whole process a bit humiliating as well.  I don't know why rads upsets me so much!  I was scared before chemo, but I wasn't MAD.

    The receptionist asked me if I was settling into a routine today.  I didn't know how to answer her!  I still hate this with every fiber of my being.  NO - it's not routine.

    I think I may be sinking into a depression.  It's been a LONG year (for all of us!) and I just need a vacation.  Oh, yeah - I can't go on vacation...I'm teather to a machine everyday for the rest of summer.  *sigh*

    I've been fighting the desire to quit and take my chances.  But I think those feelings are being driven by my 4 continually fighting kids and the fatigue that has built from all this medical stuff.  I fantasize about when the kids go back to school, but then the hectic fall schedule kicks in.  And I need to hit the ground running for that.

    I'm tired.

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  • lrw333
    lrw333 Member Posts: 215
    edited July 2011

    Hi everyone I went for my mapping yesterday. The treatments start one day next week. You have to hold your arm over your head a good 40 mins or longer. I came out crying and in so much pain. They asked if I had not been doing my exercises??? NO ONE bothered to even tell me about them. MY BS told me I did not need radiation treatment. He referred me to this Dr. Then told me he would not write me anymore medicine That the radiation Dr. would have to.  Seems like MY BS is upset I went against his wishes???   Not crazy about my Rads Dr.  My BS started me on arimadex last week. The radiation Dr. took me off of it till after I am through with treaatment. I asked for something for anixety for treatment. He gave me 1  2mg ativan. whoo hoo that should do me 6 weeks. LOL Is it me or is he lacking just a little bedside manner. This is really weighing heavy on me. Truly scared of what it is going to be like and to have a Dr. like this does not help. I am in a constant state of being dazed and confused. It is hard enough w/o having the proper information and such .  Any suggestions???

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  • Merilee
    Merilee Member Posts: 3,047
    edited July 2011

    You may not have to see the doc much. It is the techs you will see every day. I hope you like them.

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  • pejkug3
    pejkug3 Member Posts: 902
    edited July 2011

    I have the opposite problem - I like my doctor, but don't like the techs. 

    LRW - did you have chemo?  My MO  prescribed Ativan for chemo and I never took it. But I've taken it every day since starting my rads journey.  WOuld your PCP prescribe something?  I have Xanax from my PCP, but it wasn't good enough for me during rads.  I'm a basketcase!

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  • Merilee
    Merilee Member Posts: 3,047
    edited July 2011

    Well I take lorzapan ( ativan) every night for sleep. I have PTSD and have nightmares about recurrences without it. I am working with a therapist to try and get off it but I am not ready yet. Tried 2 nights ago and did not sleep.  My brain is afraid of the nightmares and won't shut off.

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  • lrw333
    lrw333 Member Posts: 215
    edited July 2011

    No Chemo so far. I have been lucky. My pcp gave me a month's worth  (Ativan) but I drive 4 hours to see him. He said he felt better if the cancer specialist treated me on this part. LOL I think just a little compassion for what we have to go thru would be nice. I feel like a number sometime not even a person. I feel almost certain if some of these people treating me had to go through it I would be treated better...Just praying it is over soon or I find another Rad Dr.

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  • Huskerkkc
    Huskerkkc Member Posts: 536
    edited July 2011

    lrw...I changed rad doctors and while it was very upsetting and I am now driving 95 miles one way for daily treatment instead of 25 miles, I am glad I did. Unfortunatley I had already done the mapping, simulation and tatoos, but had not started first treatment. then decided i could not go back, even though he is the only RO in town. He was so unprofessional, even if I did only see him weekly. 

    Got a referral to a new RO and got new simulation, mapping, but these tatoos are black light, so are not visible until they put a special pen light to my chest. I started my first rad on Wed. Yesterday they told me the rad doc hires a massage therapist to come in weekly, so after my appointment I got a very nice 15 min chair massage. She was very careful to ask what kind of cancer I had, where, if I had nodes removed, and then used less pressure on that side and used a motion that moves the lymph fluids the right way. She is specially trained to treat chemo/rad patients. I will seriously consider going to her spa and paying for a full hour treatment. I want someone who KNOWS what they are doing. 

    It's not too late for you to find someone you trust. It is not unreasonable to have anti-anxiety drugs. I would venture that 80% or more of the women here take (or have taken) an anti-anxiety, anti-depression, and a sleep aid! One ativan is not going to cut it. See if your center or clinic has a social worker and enlist his/her help.  

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  • LovesChristmas-Barb
    LovesChristmas-Barb Member Posts: 706
    edited July 2011

    9 down.....22 to go! Starting to get a little pink.

     We have our nephew's wedding tomorrow. It's extra-special because my brother is married to my husband's sister and this is their oldest son getting married so both of our families will be there.

    I hope everyone has a restful weekend!

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  • ImJulie
    ImJulie Member Posts: 58
    edited July 2011

    Hello ladies, I have been reading a lot on this thread, but haven't posted much.

    Huskerkkc: Wow, a massage therapist sounds wonderful! You have certainly found the right RO!! I am going to a therapist, but have only received instruction and information on particular exercises for LE prevention. I would LOVE to have someone give me a massage that knows about LE! I'm sure it makes the drive even more worth it!!

    I had my mapping done this past Wednesday and am expecting a call from the CT tech to let me know when my "dry run" will take place, then they will schedule the treatments. Do you have them at the same time each day? The nurse said they will also give me a lot of cream/lotion samples. I found the Fruit of the Earth Aloe Vera at Walmart. What is everybody's favorite and where can it be purchased? I live in the Atlanta, GA area and we have Publix, Kroger, Ingles, CVS, Walgreens.

    Thanks for your help and have a great weekend!

    ~Julie 

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  • pejkug3
    pejkug3 Member Posts: 902
    edited July 2011

    #8/33 done.  No skin issues yet.

    I asked the techs today - "So, next week is when I should be expecting my skin to start falling off?"

    Their reply:  "Yes.  Women with large breasts usually have a difficult time with their skin."

    Fabulous. 

    I guess I'll enjoy my last weeked with my breast covered by skin.

     Sheesh...

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  • leftfootforward
    leftfootforward Member Posts: 1,726
    edited July 2011

    anyone else here doing the " holding breath" technique? Evidently my  heart is in the way of the radiation fields so I have to hold my breath in order for them to give it to me without hitting it.  This means I can't irradiate the lymph nodes in my neck.  I get to wear cool glasses and try to make the yellow line go into the blue line to make it green. Like playing a video game.  Just wondering if anyone else was doing this technique.

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  • Elizabeth1889
    Elizabeth1889 Member Posts: 1,036
    edited July 2011

    Hi Huskerkkc:  The massage sounds wonderful.  You deserve some TLC after your bad experience with the first RO.

    Hi pejkug3:  The bedside manner of your techs sounds awful.  No assurance whatsoever.  Obviously, you are worried about your skin.  Couldn't they have told you what they would do to help you?  Sending hugs to you.

    Hi everyone:  I went for my dry run this morning.  The first treatment will start on Monday and I am already tired of being there.  Today, I met a woman nearing the end of her treatment for throat cancer.  Her neck looked horrible.  Not very comforting for someone who has only just begun. Wishing everyone a happy and side effect free weekend. 

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  • PSU222
    PSU222 Member Posts: 127
    edited July 2011

    I truly dislike rads.  Not that any of this crap was fun.  I hear all of you speak of creams and I was told "no, we don't do that".   They are always running behind and I feel like a big old piece of meat on a slab table with 6 people staring at me.  2 hours yesterday and 1 1/2 hours today, very time consuming.  Not in good frame of mind today.  

    Pejkug3 - You are right on with all of this.   

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  • pejkug3
    pejkug3 Member Posts: 902
    edited July 2011

    Hmph...yeah, I was told that my rads office doesn't do creams until the skin starts to burn.  Whatever!  I started doing creams 1 day in.  I'm secretly hoping that I don't even pink up so I can flaunt my success in their smug little faces!  ::grumble::

    Since I get no private area to change in, I get dressed with the four techs standing around and then I beeline into the bathroom to disrobe and slather on the Miaderm.  And I'm mad everyday that I have to do that.

    One of my oncology nurses is a big chested woman and she had BC 5 years ago.  She told me today that she never had a problem with the skin breaking open - she just got a little pink.  The way the techs talk, they're getting ready to fry me and I better hang on for the ride!

    PSU222 - I hear ya'!  I truly dislike rads.  I try to be agreeable and pleasant but it seems like any question that I have is met with opposition.  Grrr...  Thank God for the weekend!!  Have you started the treatments yet or are you still in sim?

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  • PSU222
    PSU222 Member Posts: 127
    edited July 2011

    Pejkug3***  Can you please tell me what cream you are using and where I might find it?    Other ladies have also told me about slathering it on but is this done after treatment.  I had simulation done last week and treatment started yesterday.  They keep doing x-rays, placements,markings and rechecks and then comes the zap..  I have Sharpie pen markings of red and blue on my boob and torso.  Dignity, what is that?? 

    I am gonna have a mental meltdown!!

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  • Huskerkkc
    Huskerkkc Member Posts: 536
    edited July 2011

    Julie, my RO's office likes to have people go the same time every day, but will work around that. this week (my first three days) I went at 3pm, but that means leaving home by 1:15. Next week I will go at 8:45 in the morning. I hate getting up early but at least I will have some "day" left. The next week I will probably go different times because I have some appts to work around and will probably start spending 1-2 nights at my parents instead of driving every day. Just depends on how I feel. 

    Pejkug3, I only got little samples of Aquaphor but I don't like that for the day. They said I didn't need anything yet either, but I went and got some Baby Aveeno (on the first page of the June 2011 list). We use lotions to prevent sunburn, why wouldn't we use lotions to prevent this burn? I have not yet found the Fruit of the Earth aloe vera. I hate Wal-Mart, and have checked Walgreens, Target and Shopko with no luck. Amazon.com has it but it doesn't qualify for free shipping. Any other ideas (besides Wal-Mart?)

    While I was waiting today for #3 treatment there were 2 old guys talking about how they were almost done with radiation (prostate I think) and were comparing diarrhea stories. At least we don't have to worry about that (do we?!)

    yorelh, I don't have to hold my breath, but my treatment is on the right side no heart involvement. However, the glasses sound fun! Cool

     PSU222...why did your appointment take so long? My first day was probably 45 minutes with digital x-rays, then days 2-3 were just 10 minutes.  

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