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

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

    NatsFan - Ha!  "Now I can watch the MLB Baseball network in the morning while doing my Lebeds - much more fun! Cool"

    My kind of gal!  Wink 

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

    HMmm, chocolate sounds like a BP reducer to me.

    I "require" person in onco office to tell me a dumb joke prior to BP reading~~

    it has been known to reduce my sky hi BP by 20 points!  Yoga breathing in advance will also help me.  Clearly it is my "white coat" syndrome as the nurse in my gym always gets a good BP reading... 

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  • nibbana
    nibbana Member Posts: 464
    edited September 2012

    Thanks for the information NatsFan. I think I may be getting some of those DVDs soon.

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  • Quail
    Quail Member Posts: 21
    edited September 2012

    Thanks for that. I think I'll one, too.  My husband is going to the States next week, and I'm going to get him to bring it back for me. I'll be over on that excercise board before you know it!!! Oh, that's a thought, I could buy a pedometer at the same time--can't figure out which one of those to get either. All these confusing BC shopping options do my head in.

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  • purple32
    purple32 Member Posts: 3,188
    edited September 2012

    I avoid surgery like the plague.

    I will say something here and some may think I am crazy, but here goes:

    I really wish this damn BC wasnt even found !  I probably would have died of my damn lung disease.

    I had VERY early stage ki-67  5%  Luminal A cancer.  Bet I would have dioed of one of my other illnesses forst.  Had NO rads due to my chronic lung disease I was managing and no hormones due to my bad bones  and no tamox due to my already compromised circulation etc ...

    so all I had was LX and SNB with 2 nodes out.


    No, I dont have  a death wish. I know young ppl ( 40s) who had cancer surgery and died. I often wonder if they would have been alive today.  Who's to say?

    Anyway, I had the lX and SNB. THREE weeks later , I noticed ' something' in the lower half of the L. breast.  I am ALMOST 6 mos out and had to figure out on the internet (Thank you ladies) it is breast/truncal lymphedema.  It seems it has gotten much worse .  Two weeks ago, I took  my wedding band off.  Now my ring on my RIGHT hand wont fit ( ggrrrr!)
    No, I dont want to ask ' whats  next ?"

    I dont trust drs- period. I dont .

    Sure, you can control  a chronic disease to " some ' dregree, but it's  a lot of stress- ESP when you have more than 1.  I know.

    Oh, and then there's the cancer too!

    I for one would like to know if ppl. with LE are more/ less or the same when it comes to recurrence likelihood.  ANYBODY KNOW?

    Sigh.

    I dont like DRS!

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

    I have no idea if LE has anything to do with recurrance, but I can surmise it reeks havoc on our immune system so then we have other complications besides the cancer issue...

    Me neither Purple, I don't like doctors.. but I have to remember - they are only people too, trying to guess at what is right for us... even though, I think some of them make bad choices for us and we need to let them know that... 

    {{{{{{{{{{HUGS}}}}}}}}}} but gentle ones... 

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  • purple32
    purple32 Member Posts: 3,188
    edited September 2012

    Thanks GmaFoley.

    I'm all done with the guessing games. My cancer can go to hell.

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

    Guess what ladies... I sprung another leak.. I got severe chest/breast pain a couple of hours ago, then about 20 minutes ago my scar hole opened up and started leaking; not as much as last time.. Got a hold of surgeon on call - he said to gauze it with a little of topical antibiotic and let it drain. Isn't that an oximoron? The antibiotic would clog up the hole? How can it drain?

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  • Cindyl
    Cindyl Member Posts: 1,194
    edited October 2012

    So I had a PT appointment today.  The pt tells me that she talked to my LE therapist about how loose my sleeve is getting... Said my LET wants to see me so she can remeasure  me for new sleeves.  The the PT looked at my arms and says that she thinks my left (good) arm is swollen and maybe I need a sleeve for that arm too.

     Argggh

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

    Cindy I understand that one. I just started with my good arm sleeve last week. It's best to get the swelling down in the beginning.

    My LE T said my arm is looking great. But to wear the sleeve during the day for a bit longer :-/ Now if I could keep the swelling down in the bad breast & stop leaking things will be great.

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  • Cindyl
    Cindyl Member Posts: 1,194
    edited October 2012

    GMA not to make light of your leakage... but sometimes I want to get rid of the fluid so bad, I feel like I'd welcome leakage. Frown My bad arm looks good, my good arm looks bad my good boob is smaller than the bad one, and my back is swole.  I can't even begin to explain to people that aren't here what a pain in the butt this all is.  I'm grateful that I had an uncomplicated surgery, simple lx, no huge problem with rads, tami not as bad as she could be.  But damn.  Not one thing in my wardrobe fits the way it used to.  Not even my LE sleeve.  The quest for foundation garments has become ridiculous. Blah.

    I went and cut my hair shorter than it's been in years (I feel like such a jerk, again, whining about this because, at least I didn't lose it) but it was so damaged (by rad?) (trauma?, tami?) who knows that it broke and frizzed like crazy every time I ran a comb through it.  It looks better, but the person in the mirror is NOT me.

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  • hugz4u
    hugz4u Member Posts: 2,781
    edited October 2012

    GMA, Just thinking about you. I think you need a rest and slow down abit. I am sure this will give you more energy to heal. big hugz!

    Cindyl, You took the words right out of my mouth. I feel the same way as you. Nothing fits and worse, when I am a good little girl and wear my garments daily, then I am having to constantly adjust them, Worst thing is wearing the compression shaper to bed with the swell spot and then it starts slipping up and starts twisting your armpit like a indian burn. I feel like I could be in a freak show with the label above my cage." crazy women being swallowed by compression shaper" I just want to scream to make it all go away. :)


    I love your thick hair. I know you want that long crowning glory back. I get it! :) What I want is my hair to stop thinning from those stupid AI's I was on because if I lose any more hair I will have to consider a wig and I just can't imagine wearing a hot, sweaty wig/shaper/glove/sleeve/swell spot. I would really need to be caged for sure!
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  • GmaFoley
    GmaFoley Member Posts: 7,091
    edited October 2012

    So no one has a garment that is comfy - I was thinking about asking my church to help me buy one being I have no insurance.  At this time I haven't found anything except sports bras that really kill my shoulders... I need a night garment... any suggestions??

    Cindy- I love your hair! Mine (no chemo here either) is coarser and still thick - I gave up and cut it real short but noticing lately I have cowlicks I didn't have before so I look like the old character "Alfalfa". Anyone even remember him LOL???

    Alfalfa

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  • Cindyl
    Cindyl Member Posts: 1,194
    edited October 2012

    I don't know that there exists a comfortable le foundation garment.  The ones that control well are hot and tight, the ones that are less binding don't control the swelling, at least that's my experience...

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

    Cindy - Which one do you use?

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  • Cindyl
    Cindyl Member Posts: 1,194
    edited October 2012

    I have tried all of these, listed in order of least comfy/most swell inhibiting to most comfy/useless. Just mho.

    http://www.amazon.com/gp/product/B007RFMJOG/ref=oh_details_o04_s00_i00

    http://www.amazon.com/gp/product/B0017VX6FM/ref=oh_details_o05_s00_i00 

    http://www.amazon.com/gp/product/B00544BXEE/ref=oh_details_o03_s00_i00

     http://www.amazon.com/gp/product/B0044WVU7M/ref=oh_details_o03_s01_i00

    http://www.amazon.com/gp/product/B000CSX9BM/ref=oh_details_o04_s00_i00 

    http://www.amazon.com/gp/product/B001L5CYX4/ref=oh_details_o06_s00_i00 

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

    Thanks Cindy - Thats what I wanted to know - I guess I might need that most uncomfortable one to get rid of the truncal swell...

    Still leaking, but is getting less and less - my LE T gave me a strip of foam gauze with no adhesive (allergic to adhesive) and told me, "I am going to give this to you as long as you promise NOT to look up the price of it on the net."  Doesn't that make you WANT to look it up??? I haven't - and it is nice stuff.. stays where you put it without rubbing and irritating the hole... Thanks Jeffrey!!! 

    Funny/not-so-funny Question: How many of you have smacked yourself in the mouth trying to pull up your sleeve??? OUCH!!! I really don't like this bi-lateral sleeve stuff, but the swelling is going down  UndecidedSmile  Guess that is GOOD NEWS, even with a fat lip LOL..

    Oh and all the chatter I hear about people making comments... I'm one of the lucky ones I guess.. the generic beige sleeves matches my color so well that only a few have even noticed them... Of course the few comments I have heard - I could have used on "OMG..there is a cure for stupid".

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  • Cindyl
    Cindyl Member Posts: 1,194
    edited October 2012

    GMA-

    Ha, I think your foam gauze is what the gave me for the rads burns.  It was great stuff.  I have a small stash I've saved. I hope it has a good shelf life, would hate to see it dry up and go to waste.  It's spendy stuff.   http://www.amazon.com/s/ref=nb_sb_noss?url=search-alias%3Dhpc&field-keywords=self-adherent+dressing&rh=n%3A3760901%2Ck%3Aself-adherent+dressing

    Glad to hear the leakage is less.  I go in tomorrow to see the LE therapist and see what she recomends re:1 sleeve, 2 sleeves, etc.

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

    Cindy Good Luck with LE T.. I see mine today...  

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  • Cindyl
    Cindyl Member Posts: 1,194
    edited October 2012

    GMA I hope your appt. goes well.

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

    Cindy - I have been blessed with an awesome LE Therapist and he is the only one near me . Knowing I really have no insurance or money, he gets creative in what we can do to control the LE without spending alot of money.... The next one is either 1.5 hours north or 1.5 hours south of us.

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  • Rockym
    Rockym Member Posts: 1,261
    edited October 2012

    Anyone know about the Juzo tie-dye sleeves.  Are they comfortable?  The person who measured me yesterday was going to give me a Medi, but I told her I wanted something a bit hipper.  I tried to find the Juzo sleeves online and only found one picture.  Sent an e-mail to Juzo and asked where I could look at one.  After three e-mails back and forth, she couldn't figure out that I just wanted to see a picture online so I could make a choice.  Turns out she is sending a catalog.  I hope it has the tie dye style in there.

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  • nibbana
    nibbana Member Posts: 464
    edited October 2012

    I have a purple and white tye die, they're fun, and yeah, hip. Next benefit year, I want to get blue and black, I think that would look cool. 

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  • sisterinspirit
    sisterinspirit Member Posts: 204
    edited October 2012

    GMA,  I just posted this on the other thread, but thought i would share it here too.

    GmaFoley,

    After using various sports bras over the years and with continued swelling in my breast and torso, my therapist recommended that I use a compression bra.  I like the compression bra by Wear Ease (wearease.com).  They have a wide range of sizes, so you may find something that fits you.  I like that the band on the bottom is wide and comes down aways, so it doesn't roll up under my breasts.  There is good coverage on the back too which is helpful for me.  If you decide to give it a try, I suggest that you also order the strap extenders which allows for a more custom fit.  Good luck to you and let us know  what you discover.

    Sis

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  • angelbaby1
    angelbaby1 Member Posts: 46
    edited October 2012

    can anyone tell me if LE is painful. i noticed swelling about a month ago and my dr has been away so no appointment until thursday. the swelling is next to my reconstructed breast. i had lymph nodes removed in dec '11 and a mastectomy and reconstruction in june '12. its possible its post surgical from the june surgery, but it is also feeling quite tender. maybe some of the feeling is returning from where it was numb?? at least thats what im hoping. but if someone could tell me if LE has a certain 'feeling' to it that would b helpful as the swelling is definitely there

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

    EbonyB - I'm sorry you have to come and ask that question, but you came to the correct place to ask... I hear from the ladies that Mastectomy and Recon can cause alot of tenderness and swelling for a while BUT to answer your question, Yes LE can be painful.. I get more of a heavy, achey feeling myself.. I have mild LE of the trunk and upper arms... its hard to explain but it is a nagging ache for me.. but as my breast swells, it hits where my nerves are and I start having major nerve pain issues.. the swelling goes down and the nerve pain lessens..

    My suggestion is to first ask for a LE evaluation by a certified LE therapist, just to be sure its not.. And if the doc says,"but your arms don't seem swollen" tell him it doesn't have to be in the arms, it can be in the trunk/breast. Binney or Kira might chime in sometime today but Here is an informational site you can look at too: http://www.stepup-speakout.org/breast_chest_trunckal_lymphedema.htm

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  • purple32
    purple32 Member Posts: 3,188
    edited October 2012

    RE: PITTED EDEMA?

    WTH is next ?  ( I dont want to know)

    Went from very mild breast Le to hands and now pitted in uoper chest and arms ...both I might add ( WHT do I get my flu shot?)

    HELP!

    Isnt pitted edema worse >?
    Am I somehow doing this to myself ?

    I have been wearing the isotoners which has been helpful , but this pitted crap is getting me scared .

    UGH UGH and UGH!

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  • Rockym
    Rockym Member Posts: 1,261
    edited October 2012

    I believe pitting is what happens before Stage 1 sets in.  Can't you get your shot in the unaffected arm or even the leg is necessary?

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  • purple32
    purple32 Member Posts: 3,188
    edited October 2012

    Rocky

    Both hands ( rings too ' small' now ) are affected so I am thinking that maybe both arms are .

    Thx for your reply.

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  • kira66715
    kira66715 Member Posts: 4,681
    edited October 2012

    Purple, pitting is a sign that the fluid is still mobile and can be moved out with treatment: do you have a LE therapist?

    I don't understand why both arms are being affected, as you were only treated on the one side, but a therapist should be involved.

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