March 2009 Rads Group?

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  • Rachel_BC
    Rachel_BC Member Posts: 1,386
    edited June 2009

    Hey Catherine- I noticed you were missing and figured you had rejoined the Land of the Living so to speak- and GOOD FOR YOU!!!!

    Yes it was an very positive experience and it has motivated me to do better on my diet.  Hum... should have gotten a workout in today and it's probably not good to do it now.  My profile pic is from the reunion.  That's my best gal pal I've mentioned before in black and another best gal pal from high school I don't see as much- but they were both huge support for me with BC.  We lost our other cohort from high school to BC in 2007 and she was well remembered at the reunion.  

    A word about my cleavage here... I have no nice clothes that fit me.  Between the economy and my weight gain and trying to diet back into my size 12s and 10s- which fill my closet and have been waiting so long they actually came back into style... THE FREAKING 80s MAN!  Sheesh. My gal pal in the pic went out and shopped and bought the black dress for the reunion, I didn't have time.  So I was wearing my normal kinda schlubby mommy clothes.  I did a quick check in my closet to see if anything fit when I heard she was going out shopping for a dress.  She's already in PA and I have to drive 2.5 hours to get there.  I had stashed that blue dress, size 14 from a while ago.  It fit but my jog bra showed.  I also have an irritation on my RADs boob argh.  I had sacrificed 3 of my six white jog bras during RADS and again, I don't want to buy more, I want to lose weight and then buy more.  I dug around in my underwear drawer and found that nice nude bra, again, from years ago, probably 2005.  Would it fit?  No time to try it on, I grabbed it and the blue dress and got on the road.  

    When I got to my friend's house to meet up with everyone before the party, I asked if I looked OK.  They were, as you can see, dressed nicely.  So I pull out this blue dress and they both were like... that is so NOT you!  (I'm the wild one of the bunch these days...) My gal pal who is very conservative said "It looks like something I'd have bought today, not you!"  We were roaring with laughter.  So I tried on the bra alone int he bathroom- it fit!   Wow, that was nice.  And with the dress too!!!  But... wow... a lotta cleavage there, right?  I may dress funky but I am not accustomed to showing that much cleavage... but the gals said Hey- you got to keep them, so why not flaunt 'em?  

    And so... I did. :) 

  • Mary22
    Mary22 Member Posts: 779
    edited June 2009

    Good for you Rachel.!!!!Kiss

    For the ladies taking tamoxifen, Benadryl(diphenhydramine generic name) are off limits it is a CPD2Y( or whatever the letters) are inhibitor. Diphenhydramine is the main ingredient found in otc sleep aides and the Tylenol and other brand PM meds. Just an FYI. Sad thing is benadryl really worked for my allergies.

    Happy Monday to all.

  • Rachel_BC
    Rachel_BC Member Posts: 1,386
    edited June 2009

    whoa- benadryl is what i need when I get hives!  bummer.

  • Mary22
    Mary22 Member Posts: 779
    edited June 2009

    That is what I said, since it will quickly stop and allgeric reaction. Rachel glad to see on the other thread that once in a while is okay.

  • Jeanne_D
    Jeanne_D Member Posts: 175
    edited June 2009

    Nelia, keeping you in my prayers! 

    Jeanne

  • Rachel_BC
    Rachel_BC Member Posts: 1,386
    edited June 2009

    Mary- I asked my ONC (by email):

    "During my Tamoxitime, may I take benadryl (for allergic reactions),  tylenol, the occasional bottle of wine/stiff drink? Any thing I should avoid?"

    He wrote back:

    "Yes you may! There are no interactions with any of those things especially on an infrequent (occasional) basis."

    I forget who it was who said (on which thread) that we couldn't but whoever posted it sounded reasonable, that's why I asked my ONC.  I don't know if its do with something else someone else might be taking. 

    During RADS I forgot we were not supposed to drink, because I rarely drink, I just didn't think about it.  But near the end I had a good ol' sit down yakathon with a galpal and we enjoyed a whole buncha wine.  RAD ONC said no problem, just don't do it again.  I think it did start some of the issues with my skin.  Oh well.  

    When we get together... if I ain't driving home... LET'S DRINK!!!! :D 

  • Mary22
    Mary22 Member Posts: 779
    edited June 2009

    Sounds good to me Rachel. I do not drink much anymore either. I did the whole college think and when I was working retail we would go out after work, then once I started having babies I just did not drink. Now I drink rarely.

    I may have been the one that posted. I looked up Drug-Interactions w/ Tamoxifen and it had a list of CYP2D6 inhibitors.  I was actually making sure I could still take sudafed, because that is the only me that works for my sinus. www.Drug-Interactions.com I hope this helps.

  • Rachel_BC
    Rachel_BC Member Posts: 1,386
    edited July 2009

    Heya Mary, I just dont spend my calories on alcohol... any spare change there goes to CHOCOLATE.  I looked briefly at www.drug-interactions.com, thank you... it became the University of Indiana School of Medicine web page, somehow related to Perdue, that looked pretty reliable but... I didn't go looking for the information.  If I saw something there that contradicted my ONC, that would just make me worry.  I used to double check and question everything he said, but in the end, he'd turn out right.  So now I just rely on him.

    And... I bet those thousands of women in the Tamoxifen drug trials for 5 years were drinkin!  But... in moderation of course.   

  • Jeanne_D
    Jeanne_D Member Posts: 175
    edited July 2009

    Anyone still have some redness just at the booster site?  I still have a lil bit there.  The radiation

    oncologist said it is hyperpigmentation and will go away.  But, I didn't know if anyone else had

    experienced it or not. 

    Laughing   Jeanne

  • Rachel_BC
    Rachel_BC Member Posts: 1,386
    edited July 2009

    nelia- thinking of you today :) {{{{hugs}}}}

  • kristifromsandiego
    kristifromsandiego Member Posts: 271
    edited July 2009

    Sorry, Jeanne didn't have the boost.

    but I will let you guys know something that I have found very valuable.  I am done with all mandatory treatment so I am left with "whats next?".  I have asked all my doctors about what I should and should not eat, what kind of exercise I should do etc. but have never gotten any real good answers.  I finally found an oncology nurse - not mine - that told me about a book....and I love it.  It is written by a doctor that was diagnosed with cancer.  It give you suggestions of good food, tells you what you should buy organic and what doesn't really matter, talks about you body AND your sole, talks about exercise, I am only about 1/3 of the way through it and I have learned so much so far.  I would recommend to to anyone with questions regards to nutrition.  The name of the book is "Anticancer - A new way of Life" by David Servan-Schreiber.

    I hope that it helps anyone who reads it.  

    Hope all is well...Kristi

  • Mary22
    Mary22 Member Posts: 779
    edited July 2009

    Kristi, the library is on my list of errands for today, so I will check out the book.

    I hope evryone has a safe and happy 4th of JUly weekend. Put all your worries aside and celebrate!!!!!!! :)

  • Jeanne_D
    Jeanne_D Member Posts: 175
    edited July 2009

    Kristi, no boosters?  May I ask why not?  I guess I thought everyone had the boosters with

    radiation treatments.  And, thanks for the info on the book.  I will look for it!

    Have a fun July 4th!!!!!!!!!!!!

  • Mary22
    Mary22 Member Posts: 779
    edited July 2009

    Kristi, I could not find that book at the library, but I did check out 2 other books "women's Cancers" by Kerry McGinn adn Pamela Haylock. And "The Truth about Breast Cancer A 7 Step prevention Plan" by Joseph Keon. So far I just glanced at the 2nd book and on pg 13-14 it talks about alcohol comsumption, which went along with alot that was said on these threads.

  • Jeanne_D
    Jeanne_D Member Posts: 175
    edited July 2009

    Wishing all of you a great 4th of July!  We are going down to our cabin at the lake in the morning

    and spending our time there.  The fireworks over the lake are so romantic!  Looking forward to it

    with my hubby!  Kiss  Jeanne

  • nelia48
    nelia48 Member Posts: 539
    edited July 2009

    Rachel, thank you for your thoughts, and hope everyone is having a great 4th!

    Jeanne, I still have a little redness, and believe it or not, it is still warm to the touch!

    I went for my PET scan on Thursday.  They said I would probably know on Monday.  Since the Dr. said he only calls if it's bad, I just might call late in the day on Monday and ask one of the girls to check my chart.  I just can't stand the wait and then the gradual "well, if he hasn't called by today, it must be ok" crap!

    I also got my mastectomy bra and form.  There was no way they could do reconstruction for me, so I'm stuck with this.  Amazing, though, how perfect it looks.  I forgot how I looked in a bra, since I haven't had one on in a year or so.  My tumor had broken through the skin, and it hurt too much to wear one.

    But I'm really aggrivated with the place that fitted me and "sold" me the bras -- or should I say, ripped me off.  Since I am on the Women's Breast/Cervical Cancer program, I have a medicaid card for my treatments, etc.  It allows 2 bras, and 1 form per year.  So I call around, and this is the only place that accepts Medicaid.  OK --- so I go.  After being fitted, etc., she comes back and tells me that Medicaid will only paid about $40.00 per bra and that I would owe another $80 if I wanted the two bras.  OK.  So I did purchase them.  medicaid did cover the cost of the form. 

    But now, in searching the internet and Ebay, I see that the best of bras costs less than $40.00 altogether!  I feel like I got took!  Bummer!!!!!

    I went out with it on today and felt that I had a sack of sand in my bra!  It was SOOOOOOOO heavy feeling.  I never realized that a boob weighed so much!  She told me that eventually I would have posture and back problems from being loppsided like that.  I believe it if this is how much one boob actually weighs!  Wow! 

  • Rachel_BC
    Rachel_BC Member Posts: 1,386
    edited July 2009

    nelia- that "we'll only call you with bad news" policy sucks dog poop.  I agree, I'd call them bunches until someone confirms the results have arrived (stuff happens, especially on a holiday weekend) and then I'd call until a doctor tells me what the story is.

    One kinda nice thing is that they sound like they don't expect anything.

    On the bras, can you take them (or one) back? Are you sure the ones you saw online were not out of stock or from less reputable vendors or full of hidden charges?

    Funny about the boob weight!

    Thanks for letting us know your progress!  

    Hugs 

  • kristifromsandiego
    kristifromsandiego Member Posts: 271
    edited July 2009

    Jeanne, they did not give me the boast because my margins were good and it was even tentative whether it was worth doing radiation, but they said it improved my diagnosis by about 12% more so I went for it. 

    Mary, Did the book you read say no alcohol or just occasionally.  Mine stated occasionally red wine with a meal.  I think the Breastcancer.org site has had articles that state NO wine.

    Nelia, Sorry about the lead weights.  There are people out there that have no conscious.  

    Take care everyone.  Kristi

  • helena67
    helena67 Member Posts: 357
    edited July 2009

    Nelia,

    Idiotic that these bras would have to cost so much! Stupid little piece of cloth! I think we should boycot these fitting stores, we don't need them.

    I bought only one, which was about $50. It is not even that comfortable. You may just want to buy your own regular bras and make a pocket in there yourself

    Smile

  • Mary22
    Mary22 Member Posts: 779
    edited July 2009

    "The Truth About Breast Cancer  A 7 Step Prevention Plan" page 13-14, states 'It has been shown that alcohol raises estrogen levels in the body and increases the risk of breast cancer.. Reseachers at the National Institue of Environmental Health Sciences found that one drink a day was sufficient to increase .. by 10%'  It does no say to drink or not to drink. The book seems to talk about lifestyle changes to prevent bc. Eating healthier, high fiber, low fat; the obvious. But there is no way I can completely change my lifesstyle. I try to eat healthy, but it is nice to enjoy good food and alcohol once in awhile. My motto is everything in moderation.

    Getting ready for a BBQ at my mil's today. Everyone had plans for the 4th, so we are having a Sunday dinner.

    Have a great weekend!

  • eadsla
    eadsla Member Posts: 217
    edited July 2009

    Nelia--What a pain about your bras.  The BC experience has shown me a lot of things.  Some great and fascinating, some not so much.  How healthcare "works" falls into the latter category.  But I'm hoping there was a reason why you were charged the amount that you were.   Although it's hard to fall into that "getting ripped off" mentality.  It's annoying to find yourself going negative, but it's even more annoying to be placed in the position to feel that way in the first place.

    Here's a "gettting ripped" story for you:  When I went in for my frst Neulasta shot, they MADE me go to a private room where I sat for about ten minutes until they came to take BP and give me the shot.  Later I got the statement from my insurance provider:  They charged 21K for the room I was in for all of ten minutes.  21K!  And my insurance paid for it.  The second and third shots I had done at the nurses station.  But the last one...again, they insisted I go to a room...and then billed the same again.  Funny thing is, with the first room, I was in this penthouse suite of a room.  The last time, I was in a much less nice surroundings, but they charged my insurance the same amount.

    Of course this is much less personal an insult compared to your bra experience.  But it does make me upset that there's always someone out there who takes advantage of someone who is already going through tough times...and for what?

    I hope your PET scan results are positive.  I agree with Rachel that you should call for the results.  Waiting is waiting, for whatever reason.  If you can get the results faster, then I'm all for that.

    Hope everyone had a nice weekend.

    Catherine

  • Rachel_BC
    Rachel_BC Member Posts: 1,386
    edited July 2009

    Waiting like that is at least a day in hell.  Every time the phone rings ... and then at the end of the day no real closure because we ALL know of the INCREDIBLE lack of sensitivity of those  who handle out test results.  Like the BRCA test woman I had such a long chat with who "forgot" that I wanted to have the results ASAP, she had them on a Friday, "forgot" to call me, when I called on Tuesday about something else, actually accidentally was transferred to her, she revealed that she had my test results and still made me wait through a series of questions just to tell me that I did NOT have the BRCA genes.

    4 days of my life I wont get back.  Idiots.  Call them Nelia. :) 

  • Mary22
    Mary22 Member Posts: 779
    edited July 2009

    I go Wed for my BRCA test results. My hubby is watching the kids. Not sure if we are all going or if I will go alone. I am a little nervous, but either way at least I will know my options. If positive I will get my ovaries and tubes removed! Which will be good for so many reasons: no more period, no more worry about pregnancy, no more worry about ovarian cancer( which is the cancer I was always worried about).

  • TorchSong
    TorchSong Member Posts: 348
    edited July 2009

    What's the news, Nelia? Praying hard here...

    How is everyone? I'm OK, emotionally up and down, but that's just life, I think. 

    My breast is still a little swollen (it's the same size as the other one and it used to be smaller, that's how I know it's swollen, lol). No redness at the booster site, though.

    We'll see how July treats me--I have a conference next week, come back on SUnday and fly out again on the Wednesday for a week's vacation. I'm going to try not to overdo it, but there are so many people I want to see adn things I want to do... And yes, I will be wearing my compression sleeve on that airplane, you betcha!

    Hope everyone is well!

    Hugs

    Martha

  • Jeanne_D
    Jeanne_D Member Posts: 175
    edited July 2009

    I hope everyone had a great July 4th weekend!  We had a wonderful, romantic few days at our cabin.  The fireworks over the lake were awesome, as always.  It was so relaxing, so wonderful, just what we needed.  And, I even got a tan!   Kiss

    I had my monthly radiation oncologist appointment and everything was fine.  He still says no hot tubs..darn it.  lol  But, I think next year, I will have to try.  Tongue out  He saw that the hyperpigmentation

     is getting better and fading more, which is good!  It was right where I got the 12 boosters.

    Well, hope you all had a great day and are enjoying the summer!

    JeanneCool

  • nelia48
    nelia48 Member Posts: 539
    edited July 2009

    Thanks, all of you, for your concern for me!  I appreciate you gals so very much!

    I still don't know anything.  I think now I've waited an "appropriate" amount of time, and I'm calling first thing tomorrow.  Rachel is right, everytime the phone rings, I get this panic feeling go through me and I freeze!  Can hardly pick up the phone!

    Somewhere on another thread, someone mentioned that the American Cancer Society has mastectomy bras for sale.  Went there to look, and by golly, they have the pockets already made that you can sew into your own bra yourself.  Wish i had known that before.

    It's really strange wearing a bra again.  I've been braless for a year now.  Since my tumor was right at the bra line and it was a big, open wound, I just couldn't wear one.  I am very much aware, though, that my ribs are tender where I got the radiation and that bra really presses on them.  Off it comes first thing when I get home!!!!!

    Jeanne, sounds like you had a great time!  That dark skin is getting lighter for me, too.  I am noticing it is dry, so I'm still using creams on it.  The cream goes right in, so I must need it!

    Good to hear from you, Martha!!!!!  Sorry about the swollen boob, but I can understand.  I'm still swollen on that side, especially just below the stitch line.  Glad to hear you are travelling!  Hope you have a great time and see everyone you want to see!!!!!

    Let us know the results, Mary!  I'll be checking back!

  • Rachel_BC
    Rachel_BC Member Posts: 1,386
    edited July 2009

    Wow nelia you are wild... waited two days for this nonsense!  Thank you for posting, I have been holding my breath.  Well literally, no news is good news.  

    :) 

  • kristifromsandiego
    kristifromsandiego Member Posts: 271
    edited July 2009

    Martha it is so great to here you again, why are you swollen?  I thought you were done with all treatment?  Nelia good luck with picking up that phone. We are all here for you!  Jeanne, glad you are healing so well.

    Talk soon  Kristi

  • nelia48
    nelia48 Member Posts: 539
    edited July 2009

    You gals are so great!!!!  I called first thing this morning, and the gal said  she would pull my chart and a nurse would call me back with the results.  I waited what seemed like forever, and then she called.  She told me that my scan was clean!  No problems at all!  I think I sighed the biggest sigh of relief ever!!!!!  Then she said something that made me think, OH NO!  She read my Blog!!!  She told me that I should feel feel free to call for test results anytime and not to wait next time and worry like that!!!!  Now where else would she know that except from my blog!!!!  Well, I'm glad she did.  Maybe she told these Dr.s that it is NOT NICE to do that to patients!

     Thanks, all of you, for your concern and prayers!  It sure helped me a lot this week!

  • eadsla
    eadsla Member Posts: 217
    edited July 2009

    Nelia--On so many levels, YOU ROCK!  And it's excellent news about your scans.  YAY!!!!

    Catherine

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