GRRRRRRRRR I HATE LE..........

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  • Binney4
    Binney4 Member Posts: 8,609
    edited August 2012

    Teka, that's not nice!YellSurprisedFrown Don't be too slow, for goodness sake!
    Binney

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  • Teka
    Teka Member Posts: 10,052
    edited August 2012
    I'll give them until 11am.Wink   Still have the twinge of pain.  
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  • GmaFoley
    GmaFoley Member Posts: 7,091
    edited August 2012

    Hi all, for the first time I had a nice Longgggggg talk with my Onc and he explained to me why he thinks I should be on an AI but said it was up to me.. Then we discussed which ones and why - he would rather have me on an AI and not tamoxifen.. I told him being it has almost been a year and I am willing to try one more time - I will be starting on arimidex again and praying no severe headaches this time.. He told me if they come back to get off immediately.. and will give me a month to detox if we have to change.. 

    I have about 5 left over from the last time and it only took 4 days for the headache to appear, so am thinking of not buying the new script until those are done... He is definately opposed to chopping them in half and start on them gradually - says that won't work - has anyone else tried this? did it help? I will post this on an arimidex board but wanted you all to know how my onc appt went... Off to bed - 4am comes early... 

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  • 3jaysmom
    3jaysmom Member Posts: 4,266
    edited August 2012

    im soo aggravated with my urologist.. i wear gloves heavy ones when i don't have the compressions on. he alwas calls in Micheal Jackson for me to come in, the gloves, and hat, for partial alopecia..

      then, he'll lecture me on self esteem.. this past week, he got it, in spades.. ive been giving him space, as he's in chemo for lymphoma: but, i told him.. this could be YOU so lighten up!!

      i don't let anyone discourage me from wearing my garmewnts.. i wear the heavy ones for rennauds, which was chemo induced, as well.. thank you bc..

     im just amazed at peoples lack of coutesy!!

     its good to "see" you all here. my health is still really poor, infections, wise.. but, other than being in bed so much, and swelling with the truncal from that, i do what im suppossed to do for the le.. often mld, wear my gloves, even in bed part of the time, and excersize a bit, so the darn stuff will move.. im sooo thankful to the ladies here, for the good sense they've given me, to keep track of my le, even when so sick...3jays

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  • Estel
    Estel Member Posts: 3,353
    edited August 2012

    Wrapped myself bilaterally for the first time. I find if I only wrap my left, my right fills up. :( So....it truly was a show. When I re-rolled my gauze from the last time, I did so too loose, so as I'm putting the finger gauze on, the roll starts coming apart from the middle. I forgot to cut pieces of tape before the gauze so I'm tearing the tape with my fingers...which then the tape got stuck in the gauze...nightmare. This is the very first time I'm going to try to sleep with both arms wrapped...I'm going to drink a glass or maybe two of wine...



    I've done some praying today for you all and for the whole LE issue in general....that our plight would get some recognition and we could get affordable help and garments.



    This whole thing is such a nightmare.



    Appreciate you all.

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  • GmaFoley
    GmaFoley Member Posts: 7,091
    edited August 2012

    3jays - I don't know why some of these docs "don't get it"..

    Dawne-Hope - I'm praying you find what works for you!!!

    I HATE BUGS.....I HATE LE!!!!  There I said it.....ahhhhhhhhh........I got bit on my elbow last night - I'm not a "under the cover" sleeper!! I circled the bite with a pen and put some cortisone cream on it... waiting..... and watching.... 

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  • Estel
    Estel Member Posts: 3,353
    edited August 2012

    GmaFoley - Thank you!  Praying for that bug bite.  GRRRRR!  Yell

    A Wrapping Report:

    My left side is my bad side, my right is one I watch carefully.  I used 3 gauze wraps on my left fingers and hand and 2 on my right.  My left is DRAMATICALLY better!  It IS like magic!  I ohhh and ahhh when I took the wraps off my left fingers and hand.  Wrinkles, baby!  Laughing  The wrap up my arm on my left side didn't last long.  It hurt and so I awoke at 2 and took it off my arm ... but left the gauze wraps on my left fingers and hand.  

    The right side ... everything stayed on all night.  Not the big, noticeable difference as the right ... but my right side isn't as bad as my left.  I primarily wrapped that side because it tingles if I wrap my left side and not that side.  Undecided

    I wrapped both arms loosely ... but my left still hurt so I'm not doing something or I am doing something I shouldn't ... I don't know.  I still am curious if it is OK to wrap the fingers/hand and not go all the way up the arm ... just go about to the elbow.  I'm afraid, though, I'm asking for trouble if I only wrap halfway up my arm.  Undecided

    Can't stop smiling, however ... at my fingers on the left side.  They're beautiful!  Kiss 

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  • GmaFoley
    GmaFoley Member Posts: 7,091
    edited August 2012
    Laughing
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  • FireKracker
    FireKracker Member Posts: 8,046
    edited August 2012

    wouldnt you know it Ducky...your fav.song could this be magic was my wedding song to my X.

    Today i finally go for my evaluation for this damn LE....#3 therapist...just maybe this one will get it right.I brought all my bras to show her along with my pocketbook so if anywone wants to jump in i made room.

    I think this LE is worst then the surgery and rads combined....along with the pain and fear this is for life.grrrrrrrrrr.

    end of rant.hugggggggs everyone.

    Does this LE ever go into remission or NED? ha.dumb question right?

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  • GmaFoley
    GmaFoley Member Posts: 7,091
    edited August 2012

    fuzzy clucker

    I think this bird knows exactly how we feel Grannydukes - Doesn't he look like he is growling himself GRRRRRRRRR!

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  • duckyb1
    duckyb1 Member Posts: 13,369
    edited August 2012

    Hi ladies..........reading and wanting to write, but my arm is wrapped, and it makes it that much harder............God I wish I could get out of this dark hole............crying jags, and it comes on all at once.............so much shit to deal with.............its LE, the shore bullshit, kids,  just everything in general.............knowing I am going to face the long horrible winter..........God it gets lonely.....the disappointment of not getting to the shore, better yet, the possibility of going, but my son and his wife, 3 kids, and the great grandchildren said they are going..................sounds like fun right............it would be, but they do nothing...........I will be stuck figuring out meals, and they don't eat everything...........not ready for that shit at the end of the season.................this is when you are wnding down, and trying to keep the place clean, and using everything left in the freezer, fridge, and pantry........I don't need  a big crowd now, plus none of my daughters are going.........one her son has a golf game for the HS, and the other refuses to go when my sons family is there cause she says..............."Mom, I am not waiting on all them"......she is 2, and they are 5, who do not help, and they are fussy eaters......................love them, but do not love waiting on people who don't chip in and help.............

    God help us all

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  • FireKracker
    FireKracker Member Posts: 8,046
    edited August 2012

    He does look like meeeeee.

    well i went for the evaluation.ha.this #3 said i have stage 0 LE.The swelling i had in my breast is not LE.She said you dont get a swollen breast with truncal LE....I must have done something for it to swell AND I did remember i picked up the 22lb.baby.The burning pain and the fact that all bras are cutting me right where they removed the nodes is scar tissue.She stuck her hand right where it was killin me and she said its from the nodes removal..when she rubbed it i screamed.thats from the surgery.She also got from a conference for LE this thing called breast spots.it covers the entire breast and i should wear it to sleep only on top of a bra.She also told me to go to NYand co.for this cami.....she was wearing it and it looked real good.no seems cause my skin is so sensitive.

    Sooooooo now i have stage 0 LE...it means still treating it just like i treated it before.I remember someone said THE BIGGEST RISK OF SEVERE LE IS HAVING MILD LE...Ill be the same nut about stage 0 as i was when i thought it was bad...im still scared...

    Does anyone think this #3 dr.is tellin me wrong?

    If she was in it for the $$$$$ dont ya think she would have offered me PT?

    hmmmmmmmm.I will go to NY and Co. and try on those camis.hey 15 bucks sounds real good to me after all the bucks i spent on all these other bras.

    Can I say YAY!!!!!!!

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  • FireKracker
    FireKracker Member Posts: 8,046
    edited August 2012

    Oh she also said i could have stretched my arm too hi and pulled something.

    If it all makes sense why am i questioning everything she said?

    All comments are welcome and actually needed.

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  • proudtospin
    proudtospin Member Posts: 5,972
    edited August 2012

    well we need you dear to not do so much and chill a bit, I am thinking that I know where a NY & Co is close to us so maybe a good place to visit this weekend unless you get there before.

    I think if you listen to her, it will not hurt you and maybe help you, make sense?

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  • Leah_S
    Leah_S Member Posts: 8,458
    edited August 2012

    Grannydukes, she said you don't get a swollen breast with truncal LE? Oh, I get it. The LE delicately and modestly tiptoes around your breast but politely doesn't touch it. Hmmm.....

    Um, no, I'm not too impressed with her.

    Leah

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  • proudtospin
    proudtospin Member Posts: 5,972
    edited August 2012

    hmm, never been told what sort of lympho I have technically but the boobie is swollen so what is it?

    good point and it sounds like a non answer

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  • Teka
    Teka Member Posts: 10,052
    edited August 2012

    grannydukes,

    Maybe JO-5 was right!

    Husband and I see the MO on Friday in the AM.

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  • FireKracker
    FireKracker Member Posts: 8,046
    edited August 2012

    The more i think about it the more i realize that i did a lot over last week.

    yeah i went to 3 PT and they all said different but she made me feel so different then the others.

    My arm is exactly the same size as the other one.

    When she touched my armhole it killed me.she said it was from the 3 biopsies in 1 yr. & Its scar tissue.

    She also said how could a bag of peas used 1x bring the swelling down in the breast...that would never happen with LE.

    Im so confused now sooooooo I do think Jo5 has something there.I will still be very careful,go get the camis,use the swell spot at night and pray a lot.Im so tired of all this and im not goin to give it anymore power...i know stage 0 is dangerous....but knowledge is power....

    thanks for the pocket party.hugggggs everyone....K

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  • proudtospin
    proudtospin Member Posts: 5,972
    edited August 2012

    good logic Granny and that cami, well it sure is worth a try

    now sleep on it and relax, stress can not be good so try not, we will get the cami this weekend

    aren't you glad you have so many pals to help you?

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  • FireKracker
    FireKracker Member Posts: 8,046
    edited August 2012

    The boards are just wonderful BUT you dear one are the best.

    In case anyone is interested Proudtospin is my neighbor...she brought me to the NJ reunion and has been a wonderful pal....always volunteering to help me...Thanks once again for always being there for me.

    I still would like to hear what Binney or Kara have to say about all this...

    huggggggggggs everyone.I wish all of you pain free days forever.K

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  • GmaFoley
    GmaFoley Member Posts: 7,091
    edited August 2012

    Granny, I just got home and read this... Oh not right! Even my surgeon took one look at my swollen breast and told me after 2 weeks I need to start doing the MLD again... I was shocked he said that because I had to talk him into a referral... I think he might have researched it a little since June and the info I gave him must have helped...

    What your doc/PT?? said was the same thing that my docs told me for a full year...  They sure know how to make you feel like you don't know s!@#$!@$... if you know what I mean... That cami sounds great! See if they have one in xxl - maybe I can order one *wink wink*.. Love you Granny and try to have a great rest of the week...

    BTW - I finally got the gumption to try the arimidex one more time... down the hatch at dinner... we shall see what happens. 

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  • FireKracker
    FireKracker Member Posts: 8,046
    edited August 2012

    GmsF---im confused with all this soooo im goin to get that cami and if i see your size i will pick it up and send it to you.really i will.my GD wants 1 too.I gotta try it on to see what size i need.im a 35 DD...should be fun but it does have quite a bit of compression.

    #3 PT...WTF....and this is the only one i really liked.....im done for now....drained from all this LE crap.

    Im on vacation for all the stretches for a few days....wish me luck!!!!!!!!

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  • GmaFoley
    GmaFoley Member Posts: 7,091
    edited August 2012

    Granny Good luck!

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  • Teka
    Teka Member Posts: 10,052
    edited August 2012
    Wink
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  • whippetmom
    whippetmom Member Posts: 6,920
    edited August 2012

    Please feel free to cross-post....

    I am posting the bio excerpt from the MD Anderson webpage of Melissa Crosby, MD., who is a plastic and reconstructive surgeon at MD Anderson in Houston. She is doing a great deal of research with lymphadema and improving outcomes in breast reconstruction in this regard. 

    Melissa A. Crosby, M.D. is an Assistant Professor in the
    Department of Plastic Surgery at The University of Texas M. D. Anderson Cancer
    Center. Dr. Crosby specializes in complex microsurgical reconstructive surgery
    in cancer patients, with a directed focus in breast reconstruction.  Her
    research interests are directed at improving outcomes in reconstructive surgery
    for breast cancer patients, including surgical treatments for lymphedema. Her
    current projects include research in evaluating the clinical outcomes and
    efficacy of using the paravertebral block in breast surgery, fat grafting for
    partial mastectomy defects, and lymphaticovenular bypass for patients with
    lymphedema. She has authored numerous abstracts, book chapters and articles in
    peer-reviewed journals and is actively involved in educating the public on
    breast reconstructive options.

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  • cookiegal
    cookiegal Member Posts: 3,296
    edited August 2012

    Ducky...take us down the shore. We eat everything!!!! I'm totally serious. Labor Day weekend, swell sisters at the shore! 

    We can all wear our sleeves and not feel funny! And swim! 

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  • GmaFoley
    GmaFoley Member Posts: 7,091
    edited August 2012

    Thank you for the info whippetmom.

    Cooklegal - I so wish I could get on the East Coast and go with Ducky too! - my debt is so bad I can't even go visit my family 9 hours away :( in CA.

    I'm having a hard morning ladies - my bite itches like the dickens and my new surgery scar decided to wake up - it hurts so bad this morning.. I might have to get that bite checked if it gets any worse - found another one on the back of the same arm... Its not fleas, maybe spider or mosquito - but I've been getting them in our room at night - it is closed off from the house and outside.. can't figure out where they are coming from. I really hate life this morning not just LE........Tongue out 

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited August 2012
    Thanks, Whippetmom. Do you know if she is doing clinical research on the outcomes of node transfer along with DIEP or node transfer by itself? That would be so helpful.




    Lymphaticovenular bypass surgery is supposed to help improve LE but is not the same thing as node transfer. In case anyone here is curious, Binney gives a brief description of it in this thread from 2010:




    http://community.breastcancer.org/forum/64/topic/758149?page=1#idx_2
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  • GmaFoley
    GmaFoley Member Posts: 7,091
    edited August 2012

    I've got a call into my PCP to look at the bite - instead of pea size it now is no spreading in a strip toward my elbow - i have a red warm patch about 3 x 6cm.

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  • prayrv
    prayrv Member Posts: 941
    edited August 2012

    Gma,

    Glad you are keeping an eye out and have a call into your pcp.  I would insist on being seen or have an antibiotic called in if they can't fit you in today.  Celluitis (if that is what is happening) is not fun.

    Trish

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